Traveling whether by car, boat or airplane can be fun and exciting. And yet traveling can sometimes feel overwhelming with or without a disability. Preparation, time management and knowing what you need are keys to successful travel. This document will provide a general overview to help you embark on your next adventure. Rules and regulations for airline travel change regularly; always double check with your airline and the Transportation Security Administration (TSA) website prior to leaving.

Helpful Hints for Air Travel

Before Getting Off the Ground

Planning your trip ahead of time is key to success. Be aware of your physical and personal care needs when deciding on time of flight, length of stay, and where you will be traveling.

Reservations:

• All airlines have on-line reservation systems. Anyone can make reservations on-line except for those people who needing oxygen or ventilator support. Book departure to give yourself time for personal care and travel to airport. Be sure to indicate what type of wheelchair, power, or manual, you are using and assistance you will need with transfers. If you require assistance at the airport, notify the airline before going. The airlines will assist you through the airport and security screening.

Pre-Flight:

• Arrive at departing airport at least 2 hours before flight. It may take you a little longer to get through the airport and you do not want to be rushed.

Check-in with Airline:

• Check all luggage bags; take one small carry-on bag with you.
• Confirm seat assignments. Request Bulkhead or an Aisle seat assignment.
• Request an aisle chair (straight-back chair with wheels) for getting onto the airplane.
• Request assistance for bags and transfers onto airplane if needed.

Going Through Security and The Screening Process:

• Advanced Imaging Technology (AIT) may be used for people who are able to stand and walk unassisted. People who are not eligible for AIT screening include infants, people who use wheelchairs or anyone who cannot stand without assistance for 5-7 seconds during the screening. AIT scanning is safe. It is safe for all passengers, including children, pregnant women, and individuals with medical transplant and prostheses.
• The Transportation Safety Administration (TSA) employs professionals who are referred to as Transportation Safety Officers (TSO). These people will be guiding you through the screening process, assisting with carry-on bags and performing the necessary screening process.
  • TSA has developed guidelines with input from disability-related groups and organizations in order to assist individuals with disabilities or medical conditions. They have trained their airport screeners how to ensure safe, dignified, and comfortable screening in special circumstances. For more detailed information about traveling with a disability, please consult the Transportation Safety Administration (TSA) website as rules and regulations are updated frequently.
• Advise the TSO about your level of ability such as if you are able to stand, walk a few steps, raise your arms, or lean forward in your wheelchair. You may ask for a private screening at any time.
• People who are using wheelchairs (WC) will be given a physical pat-down. The TSO will search outside of your clothing. They may ask you to stand up, push-up, or lean forward. They may ask about your leg bag, if you have one.
• Friends and family will have to go through the walk-through screening device. All carry-on items must go through the x-ray machine.

Service Animals:

• A service animal must have identification such as cards, documentation, presence of a harness, or marking on harness.
• You will not be required to be separated from your service animal but are required to maintain control of the service animal unless the walk through metal detector alarms and then you both will have to go through additional separate screening.
• TSO will ask permission prior to touching your service animal or its belongings.

Medications:

• The limit of one personal item and one carry on does not apply to medical supplies, equipment, mobility aids, or assistive devices required by an individual with a disability.
• All medications must have proper documentation for going through security. (Your name, medication name, dosage).
• All medications in any form and associated supplies such as syringes, sharps, infusers, inhalers, and auto-injectable pens will be allowed through the security checkpoint once they have been screened.
• If you have any type of internal medication pump (for example: insulin, baclofen, pain) advise the TSO that it cannot be removed.
• The 3-1-1 Rule of limiting liquids to 3 oz. per bag per person does not apply to medications. You should carry what you need for the flight and/or delays only. Ice packs are allowed for medications needing to be kept cold.

Medical Oxygen and Respiratory Equipment: 

• Please check with your airline as each has its own policy for on board oxygen transportation and in flight oxygen usage. It is best to carry a prescription for oxygen and respiratory equipment with you.
• Notify TSO if equipment can’t be safely disconnected so they can to do an alternate screening.
• Oxygen supplies and equipment go through x-ray screening or a physical inspection and an explosive trace detection screening.
• CPAP must be taken out of the carrying case and placed in a bin (recommend having in a plastic bag). Face masks and tubing can remain in the carrying case.

Medical Devices: prosthetics, casts, braces, walkers, crutches and canes

• All devices will need to be seen and touched as part of the screening process. You will not be required to remove prosthetics, braces, or casts. Walkers, crutches and canes undergo x-ray screening if they can fit through the x-ray machine
• You may request a private screening in another area so screening isn’t conducted publicly.

External Medical Devices:

• Notify TSO if you have a feeding tube, ostomy bag, urine leg bag, or other type of external device.
• You should not be asked to remove clothing or to empty them.
• You may be asked to lift pant leg to expose the location of the devise.

Computer Assistant Devices: 

• Notify TSO that your devise is not a laptop computer but an augmentation device (for speech, movement, etc.).
• These devices have to undergo a visual and explosive trace detection inspection.

Check-in at the Gate

Flight Gate Check-in: Arrive at your designated gate at least one hour before flight time.

• Check in with airline personnel, confirm your seat, and request an aisle chair for boarding if needed.
• Ask for a “Gate Check” tag. This lets the airline personnel know your wheelchair must go on your plane. Attach the Gate Check tag to your WC.
• Ask about the “early boarding” procedure as each airline has a different procedure. Be ready to board before other passengers.

Boarding the Airplane and During the Flight:

• Stay in your wheelchair down the jet way to the airplane door. If you are not able to maneuver a steep jet way, airline personnel with assist you.
  • Airport personnel will be available to transfer you from your WC to an aisle chair at the door of plane. Be specific with them about how to safely transfer you. Take your seat cushion and any removable parts off your wheelchair. Store these in the overhead bin on board.
  • Remind the flight attendant that your WC needs to go under plane and make sure it has the Gate Check on it.
• Once you are settled into your seat, remember to do weight shifts, drink plenty of water, and have a good flight! Have a plan for emptying your leg bag; ask your family or traveling companion to assist you. And if you must, use the “throw up” bag provided in the seat pocket and dispose in the airplane lavatory.
• About 30 minutes before landing, remind the flight attendant that your wheelchair is underneath the airplane and it needs to be brought to the door of the plane after landing.

Getting off the Airplane

• Once all other passengers have deplaned, you will be assisted off the plane. Make sure your wheelchair is up at the door before getting on an aisle chair. Transfer to the aisle chair. Be sure you know your WC is there for you to transfer into to.
• Check your wheelchair for any damage. If there is any damage to your WC, you must file a damage claim with the airline before departing the airport. That claim is filed at the Airline Baggage Claim office.
• Proceed to the Baggage Claim area to retrieve your checked luggage.

Complaints or Comments about Airline Service

Consumers with concerns about air safety should contact the Federal Aviation Administration (FAA) (faa.gov); concerns about aviation security should contact the Transportation Safety Administration (TSA) (tsa.gov).

The Aviation Consumer Protection Division (ACPD) (transportation.gov/airconsumer) operates a complaints handling system for consumers who experience air travel service problems. Consumers may also register complaints and comments about airline service concerning accessibility, handling of the person with a disability or any alleged discrimination.

Choose a path to a Healthier Lifestyle 

Coping with the effects of a spinal cord injury isn’t easy. You may be tempted to turn to alcohol, tobacco, and other drugs. In fact, more than half of the people with spinal cord injury have problems with alcohol and other drugs. If you have a spinal cord injury, please be aware that these substances can greatly interfere with your rehabilitation, and seriously damage your health. Here’s some information you can use to make healthier choices.

Do any of these stories apply to you? 

• Jim’s spasms are so bad; he takes twice his dose of prescription relaxants, so he can enjoy happy hour with his co-workers…
• Tanya has had a hard day and is feeling down. So many things that used to be easy before her disability are now difficult. She turns on the T.V. and reaches for the first beer of the night…
• John has been feeling lonely and upset since his accident, and he rarely leaves the house. To
• help him feel better, his mother buys him beer. Before the accident, she didn’t allow him to have alcohol in the house…
• Marcel is in pain. Several doctors prescribed painkillers, which he can take “as needed” for his injury. He starts taking several different drugs at once…

If you recognize yourself in any of these circumstances…then you should be aware of the problems you may experience as a result.

Alcohol 

Alcohol use can cause serious health problems. It affects major organs and all body functions. For some people with disabilities, any use of alcohol or other drugs can be very dangerous. This happens because of the way the person’s body and mind react to the medicines they use. For example, some people who have nervous system disabilities can have seizures if they drink alcohol or other drugs.

Alcohol use:

• Causes poor coordination and makes you drowsy;
• Interferes with medication schedules – speeding up or slowing down the effect of the medicine;
• Can be dangerous when mixed with antibiotics. Symptoms include headache, rapid pulse, breathing too fast and vomiting;
• Can lead to skin sores – if, for example, you pass out in your chair;
• Causes water loss. Alcohol makes you urinate more often. One big binge can change a catheterization program, interrupt the schedule, and lead to a bladder or kidney infection and even make you urinate involuntarily.

Alcohol, plus aging, plus SCI can be a risky combination…

The Age Factor: 

At least 10% to 15% of Americans 55 and older abuse alcohol–just as much as younger people. As many older people (those over 55) are hospitalized for alcohol-related problems as are hospitalized for heart attacks. Use and abuse do not decrease with age, and at least one third of older people with drinking problems develop those problems later in life–usually in response to specific situations, crises, or events in their lives. As you age, drinking can get out of hand much more quickly, sometimes in a matter of a few months. 

The SCI Factor: 

Researchers say that these dramatic life changes are risk factors:

• Loss of a loved one or marital stress
• Retirement, underemployment, or unemployment
• Lower income or financial problems
• Health problems or decline in function or mobility
• Decrease in or loss of independence
• Isolation or increased leisure time

Sound familiar? Many of these factors describe life for some people with SCI. Maybe that’s why people with SCI overuse and abuse alcohol at about twice the rate of the general population.

Is It Use or Abuse? 

Ask yourself these questions:

• Have you ever felt you should cut down on your drinking?
• Have people annoyed you by criticizing your drinking?
• Have you ever felt bad or guilty about your drinking?
• Have you ever taken a drink first thing in the morning as an eye opener to steady your nerves or get rid of a hangover?

These four questions make up the CAGE Questionnaire, which is used by professionals for diagnosing drinking problems. Answering yes to one of these questions should serve as a warning. Answering yes to two is a red alert, as 81-97% of those giving two ‘yes ’answers really are alcohol abusers.

“But I’m different.” 

There are many other questions that can be used as identifiers of drinking problems and many behaviors which indicate that drinking is more than just social. The challenge in making the call is that many, if not most, of the behaviors are often mistakenly blamed on disability or what you may think of as “just getting older.”

If any of the things listed below sound familiar and have been going on for quite a while, keep in mind that they often serve as red flags for drinking problems:

• Drinking to calm nerves, forget worries or reduce depression
• Loss of interest in food, or poor nutritional habits
• Drinking alone or in secret
• Making a ritual of drinking–such as before, during or after dinner
• Medical, social or financial problems due to drinking
• Acting irritable, resentful or unreasonable when sober
• Isolation or losing interest in hobbies or activities
• Falls or accidents, inadequate self-care, lack of exercise
• Housing problems

So Why Is It a Problem? 

As people age, their bodies become less able to handle alcohol. As a result, they can become problem drinkers without increasing their consumption. 

Alcohol can cause serious health and safety problems for all older people. SCI survivors are even more at risk because their systems are already compromised and they tend to take more medications.

In addition, other dangers exist:

• Alcohol in combination with daily prescription drugs can impair judgment and coordination, speed up or slow down the effects of the drugs, and cause drowsiness.
• Alcohol in combination with antibiotics can result in alcohol intolerance. Symptoms include headache, rapid pulse, vomiting, palpitations, and breathing too fast.
• Alcohol use causes water loss, making you urinate more often. A binge can disrupt a catheterization program, interrupt the schedule, lead to a bladder or kidney infection, or even cause involuntary urination.
• Safety is also affected. Judgment becomes impaired. Falls and car accidents are more likely. You may forget or be unable to do weight shifts and transfers safely.
• Symptoms attributed to getting older, such as insomnia or decreased sex drive or depression might instead be caused by alcohol. Abstaining or cutting down may be one of the most effective ways to eliminate many of the so-called symptoms of “old age.”

The Good News: 

Older adults have the highest success rate and greatest one year sobriety rate after treatment. Drug use in the older population is often in response to negative situations such as loss, grief, loneliness, retirement, or illness. Strategies for dealing with these losses could include cutting down isolation, addressing depression, and reducing the stressors of aging.

The good news is that many of the factors involved with taking drugs – health problems, loss of self-esteem, too much free time, isolation, depression, financial worries, family changes – are issues you’ve successfully dealt with before. Your job is to fall back on those coping skills and remember: You know how to do this. 

“When you’re trying to break a bad habit or make a positive change, it’s you that has to make it. I mean, people can tell you and tell you, but the change has to be made by you.” -Individual with a spinal cord injury.

Aromatherapy is the controlled and skilled use of essential oils extracted from various plants, roots, bark, branches, flowers, and leaves. Essential oils are used to maintain and promote health and well being, often combining the soothing, healing touch of massage with the therapeutic properties of essential oils.

Aromatherapy is a holistic treatment that can have a profound effect on the mind, body and emotions through stimulation of the immune system. Advocates of aromatherapy claim that it’s effective in treating certain illnesses, preventing disease, and reducing stress.

View, download and print Craig’s full article on aromatherapy below.

Aromatherapy PDF

Definition: Also known as “reactive airway disease,” asthma is a chronic respiratory disease that includes inflammation of the airways, obstruction of airflow, and increased sensitivity of the airways.

An asthma episode is when you have difficulty breathing as a result of this disease.

What is an asthma “trigger:”

• Environmental: Triggers may include pollens, dust, animal dander, smoke, or pollution to name a few. When the airways are more sensitive, you are more likely to have asthma symptoms when exposed to the triggers that make your asthma worse.
• Exercise induced: Exercise can cause an asthma attack in people who have no other triggers and do not experience asthma under any other circumstances.

How is asthma diagnosed?

Asthma can develop at any time and is diagnosed based on your symptoms, pulmonary function testing, physical examination, and chest x-ray. Ask your respiratory therapist and doctor if you have any questions about your diagnosis.

What are the symptoms?

Recognizing the signs and symptoms is an important part of managing asthma.

Early warning signs are things you feel before you have an asthma episode. Examples include:

• Sneezing
• Coughing
• Headache
• Throat itches
• Changes in breathing

Although signs and symptoms are unique to each person, recognizing them can help in getting treatment early and preventing an asthma episode.

Some of the symptoms of an asthma episode are:

• Wheezing
• Chest tightness
• Shortness of breath

What is an Asthma Action Plan?

An Asthma Action Plan is your plan to handle an asthma episode. This plan will help you treat and recover from an asthma episode. It is based on your “peak flow numbers.”

What is my Peak Flow number?

Peak flow numbers measure how well you are breathing. Your doctor will perform some tests on your ability to breathe. Based on the results, you will have zones that describe your ability to breath at any given time.

• Green Zone = 80-100% of your personal best. You are breathing normally and have no signs or symptoms of an asthma episode.
• Yellow Zone = 60-80% of your personal best. You are having showing early warning signs of an asthma episode.
• Red Zone = 60% of your personal best. You are having an asthma episode with severe difficulty breathing.

Your healthcare provider, together with you and your family, will develop an action plan for you based on your peak flow zones, personal resources, and general health. For instance, if you are in the Green Zone your action plan may include taking your daily medications only. If you are in the Red Zone, your action plan may be to call 911 immediately. Your plan will be unique to you.

How is asthma treated?

Your doctor will prescribe medications to help you breath easier. Bronchodilators (rescue inhaler) are usually prescribed to take during an asthma episode. Your doctor may also prescribe an anti-inflammatory medicine to take every day in order to keep your airways open which will help prevent asthma episodes.

Prevention:

• Avoid your “triggers.”
• Pre-treat with medicine when you know you will come in contact with a trigger.
• Take your prescribed asthma medication(s) as directed.
• Monitor your peak flows regularly.
• Follow your Asthma Action Plan.
• Exercise regularly and eat a good diet.

Lucas has been waking up every morning at 4 am drenched in sweat. When he turns onto his other side, the sweating goes away and he can go back to sleep again.

Amy gets goose bumps and a pounding headache every time her caregiver does digital stimulation on her bowel program. When the program is done, the headache goes away.

Mitch has had a headache for the past two days that won’t go away even after he takes Tylenol or Advil. Also, his muscle spasms have been getting worse and last night he wet the bed — what could be wrong?

What do all of these stories have in common? They all describe typical examples of people experiencing autonomic dysreflexia (AD).

What is Autonomic Dysreflexia?

Autonomic dysreflexia (AD), also known as autonomic hyperreflexia, is an emergency situation. It is an abnormal response which occurs when your body is experiencing pain or discomfort below the level of your spinal cord injury (SCI). Because the pain or discomfort message does not get to the brain because of the spinal cord injury, the body’s blood pressure increases to dangerous levels. If the cause of pain or discomfort is not found and treated immediately, serious complications such as stroke, seizure, organ damage, permanent brain injury, or even death may occur.

Who is at risk for AD?

How susceptible you are to AD is affected by the level and the extent of your spinal cord injury:

• Anyone with a T6 or above level of SCI is at risk
• Individuals with a T6-T10 level of SCI may be at moderate risk
• Individuals with a SCI below T10 are not at risk for experiencing AD

What happens to your body during AD?

When you are experiencing pain, physical stimulation, or discomfort your body sends a message to your spinal cord which in turn forwards it to your brain. For example, prior to your injury, your bladder would tell your brain, “Hey, getting kind of full down here!” and the brain would direct the body to find a bathroom and then signal the bladder when it was appropriate to go. Now that the spinal cord is injured, the message doesn’t get to the brain and vice versa — your brain just doesn’t know that something is wrong and the bladder keeps expanding with urine – this can be really painful!

Think of AD as the body’s back up plan when the brain doesn’t respond to pain. Because the brain doesn’t get the message of pain, your body makes your blood pressure increase – this is AD. When your blood pressure increases it can cause all sorts of seemingly unrelated signs and symptoms including a pounding headache, sweating, goosebumps, stuffy nose, blurred vision, or red splotchy skin. The increase doesn’t have to be very high to be considered AD, just 20 points above your normal blood pressure in adults and 15 points above normal blood pressure in children.

For example, it’s very common for people to have low blood pressure after spinal cord injury. If your normal blood pressure is 100/75, a signal that you are having AD would be a blood pressure of 120/95—keep in mind, this is considered a normal blood pressure in people without a spinal cord injury!

If this is considered normal for most people in the world – why is it so dangerous? Your blood pressure indicates how much pressure your veins and arteries are under every time your heart beats. If your veins and arteries are accustomed to having low pressures and then your heart starts pumping harder and more forcefully, your veins and arteries may not be able to take it. A pressure increase of just 15-20 points above your normal is enough to cause an artery or vein to burst – this is called a stroke and can result in permanent body or brain damage or even death! That’s why it’s so important that you know what your normal blood pressure is and to tell your doctor when it is high for you.

Signs and Symptoms of AD:

• Severe or pounding headache
• Chills or goose bumps
• Sweating
• Changes in vision such as seeing spots or loss of vision
• Anxiety or feeling of apprehension
• Face, neck, or shoulder flushing or splotchy skin
• Nasal congestion
• Slow heart rate

What causes AD?

Anything that can cause pain or discomfort will cause pain and discomfort in someone without full sensation in the body. The three most common causes of AD for people with spinal cord injury are problems with bladder, bowel, and skin.

Bladder

Bladder problems are the most common cause of AD. The bladder being too full is the first thing to check. Bladder pain or discomfort may be caused by:

• Clogged or kinked catheter
• Catheter bag that is full, is defective, or not attached correctly
• Incomplete emptying of bladder if using intermittent catheterization
• Urinary Tract Infection or UTI – also called a bladder infection
• Bladder or kidney stones
• Sometimes having medical tests on your bladder, like urodynamics or cystoscopy can cause AD

Remember Mitch? He’s the guy at the beginning of this handout who had a headache for the past two away even after he takes Tylenol or Advil. Also, his muscle spasms have been getting worse and last night he wet the bed — what could be wrong?

Mitch may have a urinary tract infection causing discomfort and irritation in his bladder. Irritation of the bladder is causing him to experience AD and increasing his muscle and bladder spasms (the reason he wet the bed). He needs to go to the doctor and have the infection treated. Once the infection is treated and the bladder is less irritated, his symptoms will go away!

Bowel

Bowel problems can also cause AD. Some common bowel problems are:

• Constipation or hard stools
• Hemorrhoids
• Gas, bloating, or flatulence
• Infection of the bowels

If you recall from the beginning, Amy gets goose bumps and a pounding headache every time her caregiver does digital stimulation during her bowel program. When the program is done, the headache goes away.

Amy is experiencing pain with the digital stimulation that her brain is not registering. Her caregiver needs to be gentler or use more lubricant with the digital stimulation. Or, Amy can talk to her doctor about using a cream that numbs the area.

Skin

Skin issues may also cause AD. Check for the following:

• Pressure sores
• Ingrown toenail
• Burns or sunburns
• Blisters
• Insect bites
• Constrictive clothing, shoes, or braces
• Hard or sharp objects next to your skin
• Incorrect placement or inflation of wheel chair cushion
• Check for constriction of genitalia; rearrange or change your position

Remember Lucas who has been waking up every morning at 4 am drenched in sweat? When he turns onto his other side, the sweating goes away and he can go back to sleep again. Lucas is not turning on a regular schedule and his skin is experiencing pain from too much pressure. When he relieves the pressure and turns onto his other side, the pain is eased and the signs and symptoms of AD go away!

Other Causes of Pain

Keep in mind that anything that caused pain or discomfort before your injury can still cause pain after your injury – but, your brain may not get the message because of the break in your spinal cord. Just because your brain doesn’t know about it doesn’t mean the pain doesn’t exist!

Some things that can cause pain after spinal cord injury that may have a hard time registering in the brain include:

• Abdominal problems such as gallstones, stomach ulcers, gastritis, or appendicitis
• Reproductive problems such as menstruation, infections, and pregnancy (particularly labor and delivery)
• Blood clots
• Heterotopic ossification (HO)
• Broken bones
• Tight or over-stretched muscles
• Severe cold or hot temperatures in the weather

What to do if you have AD?

Remember that AD is an emergency situation! Your blood pressure will go up and this is very dangerous. If you’re not able to find the cause and treat it immediately, you could have very serious complications such as a stroke, seizure, or damage to your brain, liver, kidney, or heart. All of these are life altering and can result in a brain injury, permanent health problems, or death.

1. If no one is around to help you, call 911. If you have help or can do it yourself, you should immediately sit up straight (90 degrees). Do not lie down or recline because this can increase your blood pressure even more.
2. Have your blood pressure checked immediately. You will want to keep the cuff on and have your blood pressure checked every five minutes. Also check your blood pressure after you do any interventions.
3. Next, find the cause and resolve it! Check for skin, bladder, or bowel issues.
   • Do you have any skin problems? Loosen any clothing that may be tight such as an abdominal binder, compression stockings, necktie, collars, leg-bag straps, belts, or shoes. Do you have an ingrown toenail? A skin sore? Check your seat – are you sitting on anything hard or uncomfortable?
   • If the problem is with the skin and you cannot resolve it – call 911 and go to the ER immediately!
   • Check your bladder – Is your bladder full? Is your catheter kinked or blocked? Are you leaking urine or leaking around the catheter? Make sure urine is flowing freely through the catheter and that your bladder is empty.
   • If the problem is with the bladder and you cannot resolve it – call 911 and go to the ER immediately!
   • Do you have bowel problems? Are you constipated? Do you have gas? Diarrhea? Nausea? Vomiting? Do a rectal check quickly for any stool in the rectal vault.
   • If the problem is with the bowel and you can’t resolve it – call 911 and go to the ER immediately!
4. If you have checked for bladder, bowel and skin and are unable to stop the AD, call 911. Do not drive yourself as it is dangerous to drive with AD.
5. If you have found the cause but are unable to stop AD, call 911.

Don’t be surprised if many health care providers don’t know about AD. You will have to be a good advocate for yourself and explain what AD is and why it is an emergency situation.

Always carry an Autonomic Dysreflexia Wallet Card – this card can be downloaded (English/Spanish) from the Craig Hospital website. It provides valuable information to your nurses and doctors about AD and how to treat it in an emergency.

Finally…

Being a good advocate for yourself means you are an active team player when it comes to your health and the care you receive. If you are not well enough to speak up for yourself, have a friend or family member with you to help direct your care.

• Discuss AD with your family, caregivers, and health professionals so that they are able to help you
• Keep a diary of AD with symptoms, causes, and corrective measures taken
• Call your health care provider and notify them of the episode even if you are able to correct the problem at home
• Keep an AD Emergency Kit with you at all times:
  • Blood pressure cuff
  • Anesthetic/lubricant jelly and gloves (for rectal check)
  • Extra catheter (straight, external, indwelling, or suprapubic) and insertion kit
  • Bladder irrigation kit with normal saline or sterile water
  • Any medications ordered by your doctor to treat AD in emergencies

Remember, you are in partnership with your physician for your long-term health care. You need to tell the doctor what your body can and cannot do. If you don’t understand what they are saying or doing or if you are uncomfortable with the plan of care, speak up and ask them to explain it so that you do understand. No questions are out of bounds!

This video provides an overview of the potential complications that may occur to the urinary tract systemafter a spinal cord injury.

This brief educational video demonstrates how to perform the bladder irrigation procedure in patients with spinal cord injury.

You’ve lived with someone who is spinal cord injured for some time. Perhaps you’re feeling more tired, more blue, more isolated than you want to. You may find yourself with different priorities than your partner, especially where things like work, children, education or creative expression are concerned.

The problem? You’re not disabled; your partner, son or daughter is. Research is showing that wives, husbands, significant others—those who provide care—are at risk of developing significant problems of their own. If you provide care for your loved one—or if you receive care from one—read on…

Research and Caregivers

Researchers continue to study the physical consequences of aging with spinal cord injury, but often ignore the other people in the spinal cord injury survivor’s life. What happens to those around the survivor as they, too, age?

An ongoing research project with long term survivors, sponsored in part by Craig Hospital, recently polled spouses of long-term survivors to learn more about what happens to caregivers and to their relationships over time. The findings reveal predictable areas of concern: emotional issues, role overload, more frequent health problems, and changed family dynamics.

Who are the Caregivers?

In the Craig study, 124 spouses of long-term spinal cord injured persons were surveyed. Ninety percent were women, so keep that in mind as you read through these findings. Their average age was 52 and, on average, they had been married 29 years.

In general, the spouses reported being more depressed, having different priorities, and having their needs less well met than their SCI spouses or partners, according to several questionnaires which measured depression, stress, needs, and priorities each partner reported in his or her life.

In general, non-disabled spouses reported significantly more emotional symptoms of depression, like crying and feeling blue, than their spinal cord injured spouses. Nondisabled partners also showed more physical signs of depression as well, such as sleeplessness and loss of appetite. Furthermore, non- disabled spouses had more stress, more nervousness and more feelings of being unable to cope than their disabled partners.

Finally, the SCI survivors and their spouses also had many differences in their priorities. Spouses considered learning, creative expression, self-understanding, work, and material comforts to be less important than their disabled partners did. They rated having children as more important than their disabled partners. They said their needs for having a close relationship with their spouse were less well met than their SCI partners, and their needs to work or help others were lower.

Is it Caregiving or the Injury?

But there’s more: those wives and husbands–in this study, mostly wives – who had the dual role of spouse and personal care provider reported even more symptoms and problems. They reported more signs of depression – loss of appetite, sleeplessness, feeling sad, crying – than those not providing care. These caregiving spouses also reported more physical and emotional stress, anger, resentment, fatigue, as well as feeling happy less often than their non-caregiving counterparts.

Results were analyzed in a variety of ways to identify the sources of stress depression and negative emotions. Here’s what we found:

• Younger caregivers seemed to have more stress than older ones
• Younger caregivers and caregivers whose partners used condom catheters to manage their bladders had more depression
• The act of caregiving itself seemed to bring stress, nervousness, and depression with it. In fact, it was the feelings of those who provided personal assistance that accounted for virtually all of the differences between spouses and their disabled partners.

In other words, non-disabled spouses or partners who provide care are at greater risk and more prone to depression, stress and nervousness than those partners and spouses who do not provide care.

What could I be doing?

Studies of those who care for individuals with other disabilities have reported similar findings – unmet needs, differences in priorities, fatigue, anger, and depression. In addition, they worry about the future – who will provide care when they become too old? Who will take care of them if and when they need help? Because of these similarities, there’s reason to believe that what helps spouses of people with other disabilities will also help caregiving spouses of spinal cord injury survivors too.

Some of the things that have been found to help are:

• Maintaining equality within the relationship and finding ways for both partners to make significant and meaningful contributions – such as through working, parenting, various household chores or money management
• Maintaining family support and functioning –especially during transition times
• such as moves, kids leaving home, starting or quitting work – by emphasizing the importance of each member to the family, keeping communication open through family meetings and staying in touch with extended family
• Getting help with those highly confining, restrictive and physically demanding tasks which place caregivers on someone else’s schedule – doctor appointments, bathing, bowel programs, etc. – or getting help in times of greater need, such as when you’re ill or need bed rest
• Having some backup help lined up and available–relatives, friends, neighbors, Visiting Nurses Assoc., local volunteer organizations – before the need actually arises
• Keeping in touch with friends, having people over or visiting them, going out on your own occasionally – to help decrease isolation, joining or starting a caregiver support group –not to share war stories, but to share ideas, resources and coping skills
• Preserving your own health by exercising, eating well, or managing stress, even if these activities cut into caregiving time
• Doing what it takes to feel in control – making and keeping a schedule, making informed decisions taking enough time for yourself to know when you need a vacation, a break, a night out or even time to be sick.

Caregiving spouses talk about how important communication is between partners and within the family as a whole. They also talk about something called respite care. This allows caregivers to get away from relentless and potentially overwhelming responsibilities for a day or for several weeks by having skilled care personnel stay in the home, or by having their partner stay in a facility which provides an appropriate level of care. Check with home health care agencies or Independent Living Centers for more information. As one longtime caregiver asks, “How many married couples spend 24 hours a day together – every day?”

To the Caregiver

Your job as a caregiver may feel like it never ends. You may feel as though your caregiving responsibilities are the most important ones you have. You may feel guilty if you occasionally take time to think about yourself. But, your needs are important as well.

What’s more, by not paying attention to those needs, you place yourself at risk of not being able to provide the level of care you want to provide, especially as you age. If caregiving is important to you, taking care of yourself and staying healthy emotionally, spiritually and physically will help insure that you will be much more able to give your spouse or partner the help they need.

So you’ve heard cholesterol is bad. Don’t eat red meat. Eat more fish. Stay away from eggs. Don’t eat fat. Exercise a lot. Maybe you’ve even heard that your spinal cord injury can make it worse. Is it hype, or is this a real problem that you need to deal with? Is your cholesterol level a good enough reason to change your lifestyle?Here’s what you should know: 

What is Cholesterol?

Your body does need a certain amount of fat to function properly. Cholesterol helps transport that fat to where it’s needed, so your body needs cholesterol too. However, the body generally produces all the cholesterol it needs on its own. When there’s too much cholesterol, a type of fat called LDL increases. It’s LDL that clogs up your blood vessels, increasing the risk of stroke and heart disease.

Another kind of cholesterol, HDL, helps unclog your blood vessels, but, if you eat a lot of fat, it can be really hard for the HDL to keep up. This is where cholesterol becomes a problem.

In general, a lot of LDL is bad, while more HDL tends to be good. So, as a rule, you want to avoid higher LDL levels, the bad or lousy cholesterol, and strive for higher HDL levels, the good or healthy cholesterol. Lower LDL and higher HDL will help keep your blood vessels from clogging up.

If you’re like many people and you find it hard to remember which is which, try this trick:

• HDL = Healthy cholesterol
• LDL = Lousy cholesterol

Who Has Cholesterol Problems?

People who are overweight, inactive, or smoke are more likely to have too much LDL and not enough HDL. Those who eat foods high in saturated fats, such as whole milk and some red meats — that’s a lot of us — also pay the price with higher levels of the bad or lousy cholesterol.

As people age and after women go through menopause, cholesterol tends to become more of a problem. And, individuals who happen to have a personal or family history of heart disease or diabetes have to watch their cholesterol levels even more closely.

Finally, some people have very rare conditions that leave them with lousy cholesterol levels regardless of their personal habits or history.

Does SCI Make Cholesterol Worse?

Although the research is sometimes fuzzy, most researchers agree that people with spinal cord injuries have to watch their cholesterol. They usually have lower levels of the good or healthy cholesterol (HDL), and higher levels of the bad or lousy cholesterol (LDL). This may be partly due to how the injury itself affects the body’s metabolism, and partly due to the exercise factor.

Research has already taught us that lower activity levels are related to worse cholesterol. Even very active spinal cord injury survivors may not be able to be physically active enough to favorably affect cholesterol. Fortunately, the most cost effective remedy for cholesterol problems, a healthy diet, is largely not affected by your spinal cord injury. But more on that later…

How Do I Get My Cholesterol Tested?

First of all, you have to talk to your doctor. The simplest and perhaps most common cholesterol test measures only your HDL level and total blood cholesterol, which is the combination of all the different types of cholesterol. For this test, you don’t have to fast before your blood is drawn.

The other common cholesterol test, which must be done on an empty stomach, measures total cholesterol, HDL, LDL, and other types of cholesterol, too. Although the simpler test gives you a pretty good idea if you have a problem with cholesterol, this more complicated test gives a more complete and accurate picture.

Regardless, having your cholesterol tested is as simple as having your blood drawn — something you’ve probably had done hundreds of times since your injury. Generally the results are available as early as the next day. You can talk to your doctor to find out the results.

What Should My Cholesterol Level Be?

Well, it depends. If you have several risk factors for heart disease, such as diabetes, smoking, or high blood pressure you should find out from your doctor what your own target levels should be. If you have one or no such risk factors, a total cholesterol level below 200 is usually desirable, while an HDL level greater than 40 is also good. Most important, your LDL level should be less than 130. However, since no one’s numbers ever match up exactly with the textbook figures, it’s good to have your doc help you with the figuring and interpreting your lab values.

What Can I Do To Get Healthier Cholesterol Levels?

First of all, talk to your doctor. The most common recommendation you’ll receive is to pay attention to your diet. Foods with lots of saturated fat, such as animal fat, whole milk, butter, cream, or ice cream can cause your LDL levels to rise and your HDL levels to drop. You may also be told to lose weight. Being overweight, particularly if you have a lot of fat in your abdomen, can cause LDL to rise and HDL to drop.

Here’s a list of things you can do to improve your cholesterol levels:

• If you’re overweight, lose weight
• Stop smoking
• Start exercising
• Lower the saturated fat in your diet by substituting unsaturated fat. If you need help to do this, contact a registered dietitian
• Increase amounts of soluble fiber in your diet with foods like oats, beans or fruits
• Reduce alcohol consumption
• Monitor your cholesterol levels. Talk to your doctor about how often you need your cholesterol level checked

If none of these things work well, your doctor may decide to put you on medication.

It seems like it should be simple, but, unfortunately, there are other things that are in cholesterol-free foods that still can raise your cholesterol level. For example, such supposedly low cholesterol foods as granola and margarine may actually raise your cholesterol level. This is because they contain large amounts of saturated fats or “trans” fatty acids. When your body tries to break down cholesterol, digested saturated fats get in the way. If your body can’t break cholesterol down, it will continue to build up.

In addition to watching foods that are high in cholesterol, look for – and avoid – foods that are high in saturated fat. Saturated fats can also be listed in the ingredients list under other names like “partially hydrogenated,” or look for the presence of animal fats including milk fat or meat fat. Some foods, like snack foods and ready-to-eat baked goods can be high in such fats. While a little of these foods are okay, eating a lot of them can raise your cholesterol levels. New laws prevent manufacturers from calling foods low fat unless they have less than 1 grams of saturated fat per serving — that’s not much fat.

A colonoscopy is important for individuals with a Spinal Cord Injury (SCI) in the early detection of colon cancer.

A colonoscopy is vital in the early detection of colon cancer in everyone. Spinal cord injury (SCI) patients have the same risk as able-bodied individuals for colon cancer but do not notice symptoms as easily due to changes in bowel function from the SCI. This is why colonoscopies are especially important after injury.

What is a colonoscopy?

A colonoscopy is a procedure that allows the doctor to look inside the rectum and bowels. This procedure is usually done by a doctor with special training in the digestive tract – this doctor is called a Gastroenterologist or GI Doctor.

The GI doctor uses a thin instrument with a camera on the end – this allows the doctor to view the inside of the colon on a screen positioned next to the bed. This instrument can remove suspicious tissue for testing. It can also remove pre-cancerous growths called “polyps.”

Why do I need a colonoscopy?

According to the National Cancer Institute (2011), colon and rectal cancer was diagnosed over 141,000 times in 2011 and nearly 40,000 people died from it. It is the fourth most common cause of cancer in the United States.

There are several tests to detect colorectal cancer but a colonoscopy is the most sensitive screening available today. It helps the doctor find cancer and pre-cancerous growths, polyps, before symptoms develop. Treatment for colorectal cancer tends be more effective when it is caught early.

What are some risk factors for Colorectal Cancer?

While the cause of colorectal cancer is unknown, there are several things that increase your risk of getting it. These are known as risk factors. Some of these are:

• Age 50 or over – according to the National Cancer Institute (2011), 90% of colorectal cancers are diagnosed after age 50.
• Personal history with cancer – if you have had cancer in the past, you are at increased risk of developing cancer again, including colorectal cancer.
• Family history of colorectal cancer – Even if you have never had cancer having a parent, brother, sister, or child with colorectal cancer puts you at greater risk for developing it yourself. There are genes that run in families putting some members at increased risk for colorectal cancer. If you have a family history of colorectal cancer, especially if it develops before age 40, talk with your doctor about genetic testing.
• Personal history of Ulcerative Colitis or Crohn’s Disease – these conditions that cause inflammation in the colon can increase the risk of developing colorectal cancer.
• History of polyps in the colon or rectum – Polyps are growths in the rectum or colon that can sometimes turn into cancer down the road. They are commonly found in people over 50. Finding and removing them can reduce the risk of colorectal cancer.
• Diet – Some research shows that eating a diet high in fat (especially animal fat) and low in calcium, folate, and fiber puts you at increased risk for colorectal cancer. Consider eating a diet high in fruits and vegetables to reduce your risk.
• Cigarette smoking – Smoking affects all parts of your body and puts you at increased risk for developing polyps and colorectal cancer.

The current guidelines for screening are the following:

• Everyone should have colorectal cancer prevention screening beginning at age 50.
• If you have any risk factors for developing colorectal cancer you and your doctor need to talk about whether you should have screening tests before age 50.

Why is it important for people with a spinal cord injury to have a colonoscopy?

The symptoms are colorectal cancer are very hard to detect because of the effects of the spinal cord injury. The symptoms of colorectal cancer include:

• Having diarrhea or constipation
• Feeling that your bowel does not empty completely
• Finding blood (bright red or very dark) in your stool
• Having narrower stools than usual
• Having frequent gas pains or cramps or feeling full or bloated
• Losing weight with no known reason
• Feeling tired all the time
• Having nausea or vomiting

The nerve connections between the bowel and the brain are disrupted in individuals with a SCI. Peristalsis, the normal movements of the bowel, may be diminished. A person with a spinal cord injury may not have sensation of gas pains, cramps, full, or bloated. They may not be able to feel the sensation that the bowel did not “empty completely.”

People living with SCI may not know when the rectum is full, needing to be emptied, and may need help in getting rid of the body’s waste as a result of this. Bowel programs are individually designed treatment plans to regulate bowel movements, prevent accidents or bowel incontinence, and prevent constipation.

As many people living with SCI can attest, regulating the bowel program so that you don’t have diarrhea or constipation is challenging – knowing the exact cause of diarrhea and constipation when it occurs is even more challenging. Disruptions to the bowel program can be so commonplace after SCI that it may be difficult to detect the symptoms of colorectal cancer when they develop.

Because detection of the signs and symptoms of colorectal cancer after SCI are hard to detect, a colonoscopy should be carried out more frequently than in persons who are not paralyzed. You and your doctor need to determine a screening schedule based on your individual risk factors and your ability to detect changes and problems with the bowel program.

What is the preparation for the colonoscopy and how will it affect me?

The preparation for a colonoscopy is important because the doctor needs a clear view of the colon walls to detect polyps and cancer. Therefore, all stool must be removed from the colon completely.

The goal of the colonoscopy prep is to completely remove all stool from the colon. There is not a standard colonoscopy prep that all doctors prescribe to clean out the colon. There is not a difference in preparations used for able-bodied individuals versus people with spinal cord injury. Your doctor will prescribe the medication(s) he or she feels will be best for you and your health. Follow the preparation instruction as prescribed by your doctor. Preparing for a colonoscopy is often done at home.

Again, the expectation is that all stool be removed from the colon. By following the doctor’s instructions and taking the medications prescribed, you should expect to have many bowel movements in a short amount of time. You will know when you are cleaned out because your evacuations will become clear liquid. Call your doctor if this does not occur.

Also, because having many liquid bowel movements over several hours is expected, you will need to plan ahead. Spending more than 30 minutes on the commode or shower chair at one time can damage your skin and is not advised. Also, having liquid stool against your skin can cause skin breakdown. You will want to consider planning additional attendant care to assist in this process so that you are kept safe, clean, and dry. There is no way to get around the unpleasant aspect of this.

The preparation is often the most uncomfortable part because light sedation is normally used during the colonoscopy procedure to prevent any discomfort. Many people will not even remember what happened during the actual test.

The Bottom Line…

Colonoscopy is one of many screenings for colorectal cancer. Based on your individual risk factors and your ability to detect changes in bowel movements and function, a colonoscopy may be recommended at age 50 or younger. The clean out process, or prep, can be messy and inconvenient but the benefits of early detection of cancer are worth it. It is important to develop a plan with your doctor and your caregivers. Planning ahead for the colonoscopy and the prep will make the process easier and safer for you and everyone involved.

What is a DVT?

A deep vein thrombosis (DVT) is a blood clot in a vein, deep in the body. Veins are blood vessels with valves that help blood flow in one direction. When your muscles contract the blood is pushed through the veins in your legs and arms. Blood clots can block the flow of blood through the body. This can cause swelling and other problems in your body. Another concern is that the clot may break lose, travel through the bloodstream and block blood flow in the lungs, heart, or brain.

A pulmonary embolism (PE) occurs when a blood clot travels to the lungs. The blood clot stops or severely slows the exchange of oxygen and carbon dioxide between the lungs and the heart. This may cause permanent damage or even death.

What are the causes of a DVT?

Anything that damages the blood vessel can cause the blood to clot. Some things that can damage blood vessels are:

• Smoking
• Not having enough oxygen in the blood
• Having an injury or surgery to your body

Many people with spinal cord injury and brain injury lose some function or movement in their legs and/or arms or are less active than before the injury. Because you aren’t moving around as much, circulation of blood through the body slows down. The slower the blood moves, the higher the risk that a blood clot will form.

Certain situations will make it even harder to move around after spinal cord injury putting you at even greater risk for a blood clot to develop. These situations include being sick, being on bed rest (e.g. skin sore), or sitting in one position for a lengthy period of time (e.g. airline travel).

If you have certain health problems you may have a higher risk that a blood clot will form. Some of these are:

• Family history of a DVT
• Varicose veins
• Cancer
• Heart attack or failure
• Stroke
• Pregnancy
• Taking hormone replacement therapy or birth control medication
• Trauma – fractures or breaks to bones or joints
• Have a port or IV delivering medications directly to your veins
• Sepsis
• Blood disorders
• Obesity or being overweight
• Surgery

What are the symptoms of a DVT?

Typically, blood clots develop in legs and arms. The signs and symptoms of a blood clot or deep vein thrombosis (DVT) are:

• Swelling in the limb
• Warmth or coolness on the skin of the affected limb
• Discoloration – red, purple, pale, white, or bluish colors of a leg or arm
• Tenderness or pain in a leg or arm
• Fever and chills
• Increased muscle spasms

The signs and symptoms of a pulmonary embolism (PE) or blood clot in the lungs are nonspecific and can include:

• Sudden chest pain
• Shortness of breath
• Difficulty breathing or rapid breathing
• Coughing up blood
• Loss of consciousness (fainting)

CALL 911 right away if you have these symptoms or if you think you have an emergency.

How are DVT’s diagnosed?

The doctor will ask about your symptoms and medical history as well as do a physical exam. They may order some tests including blood tests to look for blood clotting proteins. Another common test is a “duplex venous ultrasound” which uses sound waves to detect changes in blood flow. Your doctor may also order a “venography” which is an x-ray taken after dye is injected into a small vein to show areas of normal and abnormal blood flow.

How do you prevent DVTs?

To prevent blood clots and DVTs your doctor may prescribe an anticoagulant, often called a blood thinning medication. Examples of blood thinners are Heparin, Lovenox (Enoxaparin), Fragmin (Dalteparin), Innohep (Tinzaparin), Arixtra (Fondaparinux), and Coumadin (Warfarin). You may be on these for three to six months. Depending on the medication that is ordered, your doctor may order routinely scheduled blood tests. Monitoring these blood tests helps the doctor keep your blood thinner from being too high (which can put you at risk for bleeding) or too low (which can put you at risk for blood clots).

Because blood clots often cause swelling in your legs, for initial rehabilitation, after surgery, or during inpatient upgrade program at Craig Hospital, your legs will be measured every night. Measuring your legs can help early detection of blood clots. Because the risk for blood clots decreases with time after your initial injury, your legs will not have to be measured forever. Talk to your nurse and doctor about how long your legs will be measured and about your risk for developing DVTs.

How do you treat DVT’s?

If you’re diagnosed with a DVT, treatment will begin immediately. The purpose of treatment is to stop the clot from growing and to prevent a pulmonary embolism or stroke.

If you are not already on an anticoagulant or blood thinner you may be started on one. Treatment may last for several months and regularly scheduled blood tests will be ordered to make sure you are getting the right dose.

As their name implies, blood thinners thin your blood making it harder for your body to form a clot. This puts you at increased risk for bleeding if you are injured. You will want to avoid cuts or injury. Report any easy bruising and bleeding, for example if your gums bleed when brushing your teeth.

Maintaining the medication at a certain level is important to work properly. Plan ahead for medication refills so that you don’t run out.

If you are taking blood thinners it is important that you discuss with your doctor all medications, herbal medication, over-the-counter medications, as well as your diet. There are certain foods that affect how blood thinners work, too. Make sure you know what you can and cannot eat. Always check with your doctor before taking a new medication even if you consider the drug safe.

In some cases, a filter may be placed to trap any blood clots that break loose so they don’t travel up to the lungs, brain, and heart. The filter is usually placed in the inferior vena cava which is a major vein in which the blood from your lower body goes back up to the heart. If needed, the filter is usually inserted in a vein through the groin under fluoroscopy. A fluoroscopy is a special type of x-ray that allows the doctor to place the filter easily and without surgery.

You may also have to rest in bed, elevate the affected limb above the heart, and wear compression stockings.

Conclusion

You are an important member of the healthcare team. Know the signs and symptoms of blood clots so that you can talk with your doctors and nurses about what is normal and not normal for you. After all, you know your body better than anyone.

A deep vein thrombosis (DVT) is a blood clot in a vein, deep in the body. Injury, decreased movement, and slower blood flow through the body can put people with SCI and TBI at increased risk for DVTs. Medications and physical activity can help prevent them. If they are detected they can be treated.

If you have more questions about DVTs, talk with your doctors and nurses about your specific health concerns and condition.

We’re hearing more and more about fatigue these days. Who cares? Isn’t fatigue just part of getting older? Well, the truth is, new data indicate that fatigue may be a bigger deal than any of us thought. 

Longitudinal research — research which studies the same individuals over a number of years to see how they’ve changed — is suggesting that fatigue is somewhat predictable among people with spinal cord injury. A study of nearly three hundred British survivors who have been living with spinal cord injuries for over 23 years has found that more than half of those interviewed reported exhaustion and other fatigue-related symptoms.

Who Are These People?

Those who reported fatigue were not that old – they had an average age of 57. They also tended to have higher level spinal cord injuries and to be smokers; women appeared to be at greater risk, too. Three years earlier, when first interviewed, these same individuals were more likely to have reported being in poorer general health, were less likely to have been involved in exercise and fitness programs, and scored lower on tests of psychological well-being. Moreover, they were fatigued then, too.

What Does It Mean?

This same research found that fatigue today predicts other – future – problems for long-term spinal cord injury survivors. In the British study, past fatigue was linked to depression as well as a decreased sense of well-being and life satisfaction. Survivors with fatigue also reported spending less time out of the house, less time moving about in the community, and less time socializing with other people. Especially for paras, fatigue also predicted future upper arm and shoulder pain, and the need for both more durable medical equipment and more physical assistance from others.

Why Me?

Being disabled probably has a lot to do with having fatigue. Think about it: spinal cord injury– regardless of its level–requires you to work harder and longer, and rest less, to do the same things. As time goes by, parts begin to wear out, energy diminishes.

Then of course, there are all the things associated with fatigue, even if you don’t have a spinal cord injury:

• Being a woman (reports of fatigue among women are two or three times more prevalent than men)
• Alcohol and drug abuse problems, and certain medications
• Busy, stressful demanding jobs as well as unchallenging, poorly supervised, andlow paying jobs
• Chronic pain
• Psychological or psychiatric conditions

Fatigue also may be related to such things as reduced motivation, prolonged mental activity, or even boredom. It may be a result of actual psychiatric diagnoses: mood disorders, anxiety, or panic attacks, for example. In any case, ongoing fatigue — regardless of its cause — and the resulting feelings of powerlessness affect both work and personal relationships, and lead to still more fatigue and stress.

What Can I Do?

If you experience fatigue, you need to ask yourself a few questions. First, it may be helpful to determine whether your fatigue is physical – as is likely the case after SCI – or if it is the result of psychological or psychiatric issues. Here are a few ways that have been proposed (not proven) by Dr. David Katerndahl to distinguish between the two:

• Physical fatigue tends to be of short-term duration — Psychological fatigue is more chronic
• Physical fatigue is not related to stress — Psychological fatigue is
• Physical fatigue is worse in the evening and at night but is relieved by sleep — Psychological fatigue is worse in the morning and is unaffected or worsened by sleep
• Physical fatigue tends to get worse over time — Psychological fatigue fluctuates
• Physical fatigue is worsened by activity and limits people’s duties — Psychological fatigue is lessened by activity and tends to not interfere with duties and responsibilities

Also, look over the following questions and answer them for yourself:

• How severe is your fatigue?
• What activities cause it, make it worse, and relieve it?
• How does it respond to rest, weekends, vacations?

You might want to keep a diary, rating the severity of your fatigue and keeping track of the effect of your fatigue on diet, sleep patterns, and your ability to complete tasks, responsibilities, and activities of daily living.

Share your answers to these questions and your diary with your doctor. This will help you and your physician rule out any other medical conditions, physical, social, or psychological issues that may be contributing to your fatigue.

Some basic laboratory tests, such as a CBC (complete blood count) and urinalysis can be useful in ruling out other possible physical causes for your fatigue. If you are overweight, your doctor may want serum glucose and electrolytes tests. And, dependent upon your risks, recent travels, or exposures, they might also want to do some other tests.

What Do I Do? Is There a Pill?

Unfortunately, medications are rarely used for physical fatigue unless they specifically treat a particular physical problem like headache or muscle pain. These are some things that one physician-writer says he might suggest:

• Rearrange your schedule and place important activities at peak energy times; rest during the low times. Consider increasing the amount of rest you get
• Reduce your physical demands by getting more help, a lighter or power-drive wheelchair, or by cutting out some non-essential activities
  o Your physician can advocate for you and help you justify the necessary changes to your insurance company

• Consider whether exercise, diet, sleep, and/or stress management might be helpful. Physical activity is necessary no matter how bad the fatigue gets otherwise you’ll get even more out of shape, lose more strength, and the problem will only get worse
• Focus on quality of life. Set goals for yourself, and put your energy into the things that are most meaningful and rewarding to you. Is dressing independently really more satisfying than spending time with your friends, family, and grandchildren?

If you’ve lived with spinal cord injury for a fair number of years and fatigue is a part of your life, make your physician, your other health care providers, and those around you take you seriously. Most important, you need to take your fatigue seriously. Following through on the changes that are needed to reduce your fatigue will be up to you. Only you can halt what could otherwise prove to be a predictable downward spiral.

If someone yells “Fire!” people generally listen! They get ready to either (a) panic or (b) act quickly and decisively. One thing they don’t do is grab a brochure like this or a back issue of a magazine to review fire safety recommendations! Right now is a perfect time to read this and think about what you could do, should the worst ever happen.

For everyone, but especially for people with disabilities who are living on their own, fire is on the short list of safety issues to worry about. The reality is: if you have mobility impairment, you are going to be at a very distinct disadvantage should there ever be a fire. This disadvantage is multiplied if you are alone and in bed at the time. What we’ll do here is talk about how you might lessen that disadvantage. We’ll present some basic things – and some farfetched ones – to get you thinking about a fire plan for yourself.

For Starters:

Contact your local fire department on a non-emergency telephone number and explain your special needs of disability and mobility issues. Your local fire department will be able to help you with an escape plan and may be able to do a home fire safety inspection, as well as offer suggestions about smoke alarm placement and maintenance.

Don’t smoke in bed; this is a no-brainer. Keep tabs on electrical safety by checking your home regularly. Are outlets overloaded? Are you rolling, day after day, over electrical cords buried under carpets? Perhaps most important, get smoke alarms. They do work! Have several throughout your house – and one in your bedroom for sure. Check and replace their batteries on a regular basis. Better yet, have a hard-wired (inter-connected) smoke alarm system installed in your home. Then, if one alarm goes off, they all go off and you’ll hear the warning no matter where you are or where the fire is. Fire fighters also recommend that if you have an alarm in your bedroom, sleep with your bedroom doors closed. Together, closed doors and smoke alarms can buy you crucial time until the fire department arrives.

Make a Plan:

Next, you need to develop your fire evacuation plan. It’s crucial that you identify – and practice using – two different routes to get out of your house. You probably already have one – and, it’s probably already accessible – so we’ll focus on the second. It does not need to be perfect. If it’s a back door or a side door, you need to be able to open it and then get yourself through it, outside, and away from the house. It could mean rolling down a very steep ramp, or backing yourself down a short staircase by grabbing onto the handrail, leaning forward and rolling yourself, rear wheels first down the steps. It could mean crawling or dragging yourself down the stairs to the grass in your backyard. The point is: you’ve got to have a plan, and you’ve got to practice it.

If you haven’t got a second useable doorway, maybe you need to look at your first floor windows. Is there a low one, or one that could be modified so you can open it easily yourself? Could you wheel up next to it and, literally, pitch yourself out, onto a grassy or sandy area that you’ve created below?

Far-fetched? Yes.

Dangerous? Most likely.Dangerous? Most likely.

Better than being trapped in a burning house? You bet.

What If You’re In Bed?

Now let’s think of a trickier proposition: you’re in bed when all this happens. What do you do? First, always have your chair positioned at your bedside. Even if you can’t transfer yourself, your chair needs to be there, ready for anyone who might arrive to assist you. You need to have a phone or call system you can reach and use at your bedside. You might want to put 911 on your speed dialer.

Next, if you can sit up and get out of bed and into your chair, do it. If the fire is not in your bedroom, but you’re still not able to get out past it, remember to keep your bedroom door closed. If you’ve got a source of water nearby, and you’re able, wet two towels. You can stuff one along the crack at the bottom of your door to keep smoke out. Keep the other one with you. If it gets smoky, you can wave it around to dissipate the smoke, or wrap it around your head and face to breathe through.

Open your bedroom window. Hang a towel, jacket, shirt or something out of the window to make it clear you’re there. Wait. If necessary, dive, fall, or throw yourself out of your chair onto the floor. Since smoke rises, it’s the floor that will be smokeless the longest. However, if you do go onto the floor, do it in an open area in the center of the room where you will be readily visible to someone entering the room. Don’t wedge yourself in between your bed and chair, next to a dresser, etc. (Note: these suggestions for what to do while inside your bedroom are also good if you happen to be in a motel, dormitory, or office building. These buildings are usually built with special fire doors and sprinkler systems, making all of these strategies especially useful while you wait for help to arrive.)

If you can’t get into your chair, there are still some things you can try. Can you wet a towel? Unappetizing as it sounds, don’t overlook an obvious water source very nearby – your night-bag. Better than burning or inhaling smoke? You bet. You might also consider using sheets, blankets, comforters, and clothes that are as burn resistant as possible.

Check list:

Let’s review the things you need to think about, plan for, and practice now to be prepared:

1. Contact your local fire department on a non-emergency telephone number and explain your special needs of disability and mobility issues. Your local fire department will be able to help you with an escape plan and may be able to do a home fire safety inspection, as well as offer suggestions about smoke alarm placement and maintenance.
2. Install smoke alarms. Hard-wired ones are best.
3. Practice using your phone or call systems – when you’re up, and when you’re in bed.
4. Practice opening windows. Learn to manage your bedroom window, as well as any first floor windows that may be part of your alternate escape route.
5. If there is any way you can master getting from your bed to your chair, do it.
6. Practice safely “falling” from your bed to the floor, as well as from your wheelchair to the floor. There are right and wrong ways to do this, so work with a therapist. Put pads or mattresses on the floor first.
7. If you’ve got the upper body strength and function, learn “combat crawling” – pulling yourself forward with your arms and elbows while on your stomach. Practice rolling too. Again, be sure to pad the floor. Save the part where you practice actually crawling down the stairs or a ramp for a “real” emergency.
8. If you’ve got a short staircase with handrails as one of your exits, and if your arm strength is fairly good, practice backing yourself down the stairs in your wheelchair. Keep your hands on the rails, lean way forward, give a little push, and gravity should do the rest. It’s noisy, it’s scary, and it’s jarring. Be sure to only practice this with a spotter – one who is behind you holding on to the railings and is ready to stop the chair if need be. Save the solo flight for when you really need it!
   • Note: How successfully and safely you can do this depends on numerous things beyond your control: the design of your stairs, the length of your footrests, the type of handrails you have, etc. If you find this technique isn’t going to work for you, you can rule it out and come up with a different plan.
9. Once you’ve mastered all the pieces, practice going through your entire evacuation plan – using at least two different routes.

Now that we’ve gotten you whipped into a panic, relax. Many of the strategies described here can be very dangerous; some or many won’t work for you – either because of how your house is designed, because of the level of your spinal cord injury, or because you’re never alone. However, what we’ve described should get you thinking. Review all we’ve described, as well as all of your own options. Make a plan that fits your situation. Share this plan with others close to you, so they know what to do – and what they can expect youto do – in an emergency.

Finally, and most important, practice your plan. Practice those things that you can do safely and without injury; use a spotter when necessary. But, if you’re likely to get hurt in your “fire drill,” don’t take the chance; instead, just plan those things out in your mind.

Remember: Fire is a big risk, but it’s also a pretty unlikely risk. You know how it goes: the more prepared you are, the less likely that it will ever happen!

What is a Foam Pad or “Quad Pad?”

Padding can be done in bed using regular or foam pillows. When choosing a pillow consult with your wound care specialist or your primary care physician to make sure your are using the right pillow for your needs.

Foam pads or “quad pads” are specially cut to your dimensions. They are not made by any company. They can be ordered through upholstery repair shops. The size commonly used at Craig Hospital for padding under the ankles and above and below the pelvic area is: 6 inches x 18 inches x 3 inches.

Foam pads need to be replaced several times a year because they lose their shape. In one unpublished study by the Craig Outpatient Clinic, foam could not longer support the average ankle (10 lbs.) after 30 days. Replace foam pads when they no longer provide support or no longer relieve pressure from bony prominences. Always use soft foam. If foam is too hard, it can cause pressure sores.

Where do I buy foam pads or “quad pads?”

Craig does not recommend or endorse one company over another. You can buy foam from any upholstery repair shop.

What if I develop a pressure sore?

Padding is just one aspect of preventing and treating pressure sores. Whenever using a new product, like foam pads or a new pillow, make sure it reduces pressure to the bony prominences. If you notice any redness or skin irritation discontinue use and contact your wound care specialist or primary care provider immediately.

This educational video demonstrates how to practice proper hand hygiene to help protect everyone from harmful germs that can cause illness.

Even with health insurance, a medical crisis can create a significant financial burden most families cannot meet alone.

For 40 years, Help Hope Live has been showing clients and families how to bring together a network of relatives, friends, and neighbors in fundraising efforts to help cover the cost of uninsured medical expenses. These efforts play a critical role in helping our clients recover and maintain their health and independence.

Since 1983, we have helped thousands of people raise millions of dollars for Help Hope Live to pay a wide range of expenses, including out-of-pocket costs for: medications, durable medical equipment, home health care, wheelchair-accessibility modifications, physical therapy, innovative treatments, medical travel and temporary relocation, even emergency living assistance. Our program has also helped thousands pay it forward and assist others with their medical expenses.

Annually, we help place medical care within reach of about 5,600 families across the nation.

Heterotopic Ossification (HO) is the abnormal growth of bone in the non-skeletal tissues including muscle, tendons or other soft tissue. When HO develops, new bone grows at three times the normal rate, resulting in jagged, painful joints.

What causes Heterotopic Ossification (HO)?

HO only occurs below the level of injury. The specific cause of HO after spinal cord injury is unknown. There are many theories about why it develops after spinal cord injury including:

• Trauma or injury
• Immobilization or paralysis
• Muscle spasms
• Loss of oxygen
• Severe bleeding
• Inflammation – the body’s natural response to injury
• Genetics
• Prolonged pressure on the hips

HO may develop within days following the spinal cord injury or several months later. HO usually occurs 3-12 weeks after spinal cord injury yet has been known to also develop years later.

HO occurs after other injuries, too. HO has been known to occur in cases of traumatic brain injury, stroke, poliomyelitis, myelodysplasia, carbon monoxide poisoning, spinal cord tumors, syringomyelia, tetanus, multiple sclerosis, post total hip replacements, post joint arthroplasty, and after severe burns.

In patients with spinal cord injury, 90% of cases occur in hips but it can also occur at the knees, elbows and shoulders. HO occurs more in men than in women. People in their 20’s and 30’s are affected more than other age groups.

What are the symptoms?

Decreased range of motion 

A person with HO may have difficulty or limitation in the ability to perform activities of daily living or in moving their arms or legs as they once did. This is related to the development of bone at the joint, which interferes with movement. This is most often seen as a decrease in ability to bend at the hips, bend the knees, bend the elbow, or move the shoulder.

Swelling or warmth of joint area

Redness, swelling or warmth may develop in areas over a joint due to rapid onset of HO. Areas that this may develop include:

• Hip
• Knee
• Elbow
• Shoulder
• Thigh
• Entire leg

Fever

Sometimes a fever will develop and can be as high as 103 degrees Fahrenheit. Sometimes, the fever or temperature will be higher at night.

Increased spasticity

Increased muscle spasms may occur related to pain and discomfort in the joints.

Joint Pain, Muscle Pain and Autonomic Dysreflexia

The bone that grows is often jagged, making joint movement rough and bumpy; this can be very painful. If you have sensation after your spinal cord injury, this pain will be picked up by the brain and you will know that you are uncomfortable. If you have lost sensation after your SCI, your brain may not know your body is in pain.

Autonomic dysreflexia (AD), also known as autonomic hyperreflexia, is an emergency situation. It is an abnormal response that occurs when your body is experiencing pain or discomfort below the level of your spinal cord injury (SCI). Because the pain or discomfort message does not get to the brain due to the spinal cord injury, the body’s blood pressure increases to dangerous levels. If the cause of pain or discomfort is not found and treated immediately, serious complications, such as stroke, seizure, organ damage, permanent brain injury or even death, may occur. Autonomic dysreflexia can occur with HO as the abnormal bone growth causes pain that the brain doesn’t recognize because of SCI.

What are some of the effects on your body from HO?

Having abnormal bone growth in one or more of your joints can affect many parts of your life. For example, when you can’t move your joints freely, this can affect your ability to do transfers, bowel care, bladder care and other activities of daily living. Also, because HO can increase the amount of pressure applied to tissue under certain boney areas, skin breakdown can occur. Pain in the joint can lead to increased spasticity and/or autonomic dysreflexia. Blood clots or deep vein thrombosis (DVT) can also develop due to decreased movement and problems with circulation around the joints. You will want to work closely with a doctor to treat HO and prevent potential complications.

How is it diagnosed?

HO is often diagnosed after you have some or all of the symptoms listed above. Your doctor will order some tests to confirm the symptoms are related to HO. Some of the tests that may be ordered include:

• Blood tests
• CT scan
• Ultrasound
• Three-Phase Bone Scan
• X-rays

How is it treated?

Your doctor and therapy team will work with you to develop a treatment plan that works for you. Usually, treatment will include gentle range of motion of the joints and some physical therapy. Your doctor may also prescribe medications to slow down or stop the abnormal growth of bone.

When HO severely affects your movement or causes excruciating pain, surgery may be needed. Also, radiation has been used in some cases to stop the growth of bone. All other treatment options are explored first before considering surgery and/or radiation.

Preventative Measures

Because the cause of HO is currently unknown, preventive measures are limited. Some doctors will prescribe medications to prevent bone growth. The blood thinner Coumadin (Warfarin) is sometimes prescribed because it decreases the activity of Vitamin K, an important component in the development of bone. Another type of medication often prescribed is non-steroidal anti-inflammatory (NSAIDS) drugs. These medications prevent formation of bone growth by blocking prostaglandin cells from forming bone. Depending on your individual health and needs, your doctor and team will develop a plan that is right for you. All medications come with side effects – never start or stop a medication without consulting with your doctor first.

The Take-Home Message

People with SCI need to be aware of changes in sensation, function, pain and strength. With any change, speak with your doctor and report changes early. Losing function, movement or having pain can indicate problems like HO. Be proactive in your health and talk with your doctor about any changes you experience.

What is HAP?

Hospital Acquired Pneumonia (HAP) is an infection in the lung that occurs more than 48 hours after admission to a hospital. It is an infection that was not present before the patient came to the hospital. HAP is the second most common hospital acquired infection. It is the most common cause of death among hospital acquired infections.

What are some of the risk factors for HAP?

Some factors that may increase the risk of HAP include:

• Weakened cough
• Mechanical ventilation
• Tracheostomy tubes
• Suctioning
• Weakened immune system from disease or medications

What are the some of the signs/symptoms of HAP?

The patient may experience:

• Green, yellow or pus filled secretions
• Fever
• Increased fatigue
• Shortness of breath
• Coarse (crackling) breath sounds
• Loss of appetite

How is HAP diagnosed?

There must be evidence on the chest x-ray of HAP as well as at least one other symptom such as fever, an increased number of white blood cells, or the presence of yellow, green, or pus filled secretions from the lungs.

What treatments are available for patients with HAP?

• Antibiotic therapy may be used
• Frequent turns may be done in order to prevent secretions from building up in the lungs making breathing easier
• Lung treatments/medications may be given to help loosen and remove thick secretions from the lungs and improve the body’s ability to carry oxygen in the blood
• Oxygen may be provided in order to maintain good oxygen levels

HAP Prevention Bundle

Craig Hospital has adopted a group of prevention strategies to reduce the chance of getting HAP. This group of strategies is called the “HAP Prevention Bundle”. Some of the components of the bundle include:

• Clean Hands – all staff will wash hands or use antibacterial hand gel before and after each patient interaction. Additionally, gloves are worn by staff during all direct patient contact
• Frequent Oral Care – research studies have shown that providing frequent oral care for patients with artificial airways (e.g. tracheostomy tubes) reduces the amount of bacteria in the mouth, decreasing chances of HAP occurring
• HOB elevation – Keeping the patient’s head of the bed at 30 degrees, when safe and appropriate, reduces the chance of germs from the patient’s mouth coming in contact with the lungs. Please keep in mind that increasing the head of bed to 30 degrees may require more frequent skin checks and turning
• Clean Suction Technique and Closed Suction Catheters – when used correctly during suctioning they decrease the chances of introducing any outside germs to the patient’s lungs

What can YOU do to help prevent HAP?

• Clean Hands – we encourage all family, friends, and visitors to use the same hand hygiene methods as staff while spending time at Craig. Antibacterial soap and antibacterial hand gel are available in each patient room and available for your use
• Ask Questions – contact your nurse or respiratory therapist about any questions or concerns you may have about HAP and its prevention
• Partnership – work alongside Craig staff to ensure that oral care, clean suction techniques, and head of bed elevation goals are being met
• Speak Up – say something if you notice a family member, friend, or staff member that did not wash their hands before touching a patient

There are two main problems after spinal cord injury that may affect fertility:

1. Ejaculation may not occur normally
2. Sperm may be slower and not work well enough to fertilize an egg.

Ejaculation

• Only 10% of men with spinal cord injury can ejaculate normally during intercourse
• Ejaculation reflex is controlled in the spinal cord at L3-L4
• There are two parts to ejaculation: emission and expulsion
• Emission is the start of sperm coming out of the testes
  • Controlled in the spinal cord at T10-L2
  • Tells the bladder neck to close so semen does not go into the bladder
  • Causes contraction of muscles in the genital area
• Expulsion is when the sperm comes out of the penis
  • Controlled in the spinal cord at S2-S4
  • Causes relaxation of muscles in the genital area

Sperm Quality

• Even though the total number of sperm is normal, for complete or incomplete spinal cord injuries, there are fewer motile sperm after spinal cord injury (the sperm do not move as fast) and the viability of the sperm is low (do not live as long)
• The semen ejaculated may be brown or red in color
  • It is not completely understood why this occurs, but it seems to be caused by other bodily cells in the semen that are not there normally.

Things That Effect Sperm Motility (Ability to Move)
Choice of Bladder Management: Sperm motility (movement) is affected by the method of bladder management

• Intermittent catheterization (IC) 27% sperm motility
• Sphincterotomy 25% sperm motility
• Voiding 15% sperm motility
• Suprapubic catheter 17% sperm motility
• Indwelling urethral catheter 5% sperm motility

Method of Ejaculation: The method used to get sperm to come out of the penis may also affect sperm motility

• Masturbation
  • Best sperm motility of SCI subject group (although still much lower than non-injured men)
  • 36.9% average motile sperm
• Penile Vibratory Stimulation (PVS)
  • 25.9% average motile sperm
• Electro-Ejaculation (EJ)
  • 15% average motile sperm

Taking Testosterone Supplements

• If men having with low testosterone levels, start taking testosterone supplementation, this causes the testes to stop producing their own testosterone, which is needed for creation of sperm
  • This means that sperm production will significantly decline and in some cases may stop completely
• After stopping testosterone supplementation, normal sperm production usually returns within 1 year

What Are The Options To Help Get Semen/Sperm?

• Penile Vibratory Stimulation
• EEJ (Electro-ejaculation)
• Prostate Massage
• Testicular or epididymal sperm aspiration
• Testicular Sperm Extraction (Surgical Sperm Retrieval from the Testes)
• Microsurgical Testicular Sperm Aspiration

Penile Vibratory Stimulation (PVS)

• T10 or above: Using the Ferticare PVS device there is an 86% success rate in achieving ejaculation
• T11 or below: Using the Ferticare PVS device there is a 15% success rate in achieving ejaculation
• All levels of injury: The Viberect X3 PVS device had a 77% success rate
• The PVS procedure may cause swelling/edema to the head of the penis, abrasion, and autonomic dysreflexia
• Patients who have not been injured more than 1 year may have inconsistent response or no response to PVS, which may change/improve after 1 year from injury
• Much less expensive than other methods, and easier to control Autonomic Dysreflexia
• May be done at home
• Ejaculation can be used for vaginal insemination if the sperm motility is good enough

Electro ejaculation (EEJ)

• An electric probe or electro ejaculator is inserted into the rectum and positioned against the prostate
• Uses energy to cause ejaculation.
• Ejaculation happens almost 100% of the time
• Will often cause retrograde ejaculation (sperm goes into the bladder instead of out of the penis)
• Many doctors will not have this machine in their offices.
• Must be done in a medical office by a trained medical professional
• Less motile sperm results than with PVS
  • May need to proceed with IUI (Intrauterine insemination) or IVF (InVitro Fertilization) if there are not enough motile sperm for vaginal insemination
  • This requires cooperation with a reproductive endocrinologist
• Can cause pain/discomfort, autonomic dysreflexia, and rectal tissue injury
• If the person has sensation, EEJ may not be the best option
  • Doing the procedure under general anesthesia can be more dangerous and expensive.
  • It is usually only a good option for men that have failed PVS and who will not requireanesthesia

Prostate Massage

• No specialized equipment needed
• Finger is inserted into the rectum against the prostate, and prostate massage is performed
• Amount of sperm may be different each time
• Testicular Sperm Aspiration
• Procedure where a needle is inserted into the testis and sperm is taken out
• Higher motility than regular ejaculation by a person with a spinal cord injury
• The amount of sperm extracted is less
• May cause scarring
• Useful for in-vitro, but not enough for vaginal or uterine insemination

Testicular Sperm Aspiration

• Procedure where a needle is inserted into the testis and sperm is taken out
• Higher motility than regular ejaculation by a person with a spinal cord injury
• The amount of sperm extracted is less
• May cause scarring
• Useful for in-vitro, but not enough for vaginal or uterine insemination

Testicular Sperm Extraction

• Will have higher motility sperm than ejaculate
• This is a surgical procedure where a small incision is made into the testes and sperm is extracted
• For in-vitro use only

Microsurgical Testicular Sperm Extraction

• The outer cover of the testicle is opened and the inside is checked for areas more likely to be making sperm.
• This technique is done by a Urologist trained in microsurgery and is usually done in the operating room.
• More of the testes are examined, but less tissue is removed and there is less damage to blood vessels.

Old beliefs
It used to be thought that sperm motility might worsen the longer you have had a spinal cord injury. That sperm was changed due to higher scrotal temperature (from having your legs together in the wheelchair), or that not ejaculating often enough will cause changes to sperm. We know now that these beliefs are untrue.

What is it?

The Mitrofanoff procedure is a surgical procedure to assist with bladder emptying. Originally developed for use in children, the Mitrofanoff procedure has become a surgical option for people living with spinal cord injury and neurogenic bladder. People who have difficulty with self-catheterization through the urethra or have discomfort with self-catheterization have had the Mitrofanoff procedure to some success. It has been especially successful in women (who have difficulty with self-catheterizations through the urethra) and in people with recurrent and severe autonomic dysreflexia related to their bladder.

During surgery, a small channel is created with the appendix or with part of the colon. The appendix is a small organ that is not necessary to keep you alive – it doesn’t do anything important. It can be removed to create the small channel, which is why this procedure is also referred to as the Mitrofanoff appendicovesicostomy. If you don’t have an appendix anymore, part of your colon will be used to create the channel between the bladder and the surface of the abdomen.

After the surgery, the bladder will hold urine, just as it always has. When it is time to self-catheterize, a catheter is inserted through the channel in the abdomen into the bladder. The urine then drains into a toilet or cup and discarded. After the bladder is empty, the catheter is removed and the channel self-seals shut to prevent any leakage of urine between catheterizations.

The Mitrofanoff procedure is considered major surgery. Recovery from this procedure usually takes six weeks. Initially, the Mitrofanoff channel may not be used for draining urine. It will need to heal first. During this time, a suprapubic catheter is used to drain urine. The suprapubic catheter is removed once regular intermittent catheterizations through the Mitrofanoff channel are proven. The suprapubic catheter opening then heals closed.

The Mitrofanoff procedure is different from a suprapubic catheter.

Mitrofanoff Procedure:

• Surgical procedure that uses the appendix or part of the colon to create a self-sealing channel or passage from the surface of the abdomen to the bladder.
• Used for intermittent catheterization – a catheter is inserted as needed to drain urine and then removed.
• The catheter drains urine into the toilet or a cup and is removed when the bladder is empty

Suprapubic Catheter:

• Surgical procedure that makes an opening from the surface of the abdomen to the bladder.
• Used for indwelling catheterization – the catheter is inserted into the bladder and stays there all the time. The catheter is changed once a month or as needed.
• The catheter is connected to a leg bag or large collection bag.

Who may have the Mitrofanoff procedure?

This procedure is not for everyone. Sometimes the effects of your spinal cord injury and neurogenic bladder will prevent you from getting the Mitrofanoff procedure. For example, you must be able to do or direct others to do regular intermittent catheterizations. You will need good hand control if you do it yourself or very reliable caregivers that will be able to catheterize you every four hours. If you don’t have this, the Mitrofanoff procedure is probably not a good option for you.

Your bladder will also need to have certain traits to make you a good candidate. Your bladder will need to be “low pressure” (not high pressure) and be able to hold a large amount of urine without leaking or refluxing into the kidneys. This information about your body will be provided by a urologist who will do a urodynamics evaluation.

Finally, this procedure is often done at least one year after your initial spinal cord injury. This is because in the first two years of your injury, a lot of healing is still occurring and you want to make sure this is the right option for you. You will need to be very committed to this bladder option and to maintaining your health afterwards. Performing regular and reliable self-catheterizations every four hours will be required as will proper infection control.

What are the potential complications?

• This is a surgical procedure and comes with all the risks and potential complications of any surgery. The potential for complications should be considered individually as this is a major surgery. Your surgeon or doctor will talk with you about any complications you need to know about.
• The channel may close or become too small to pass a catheter through. This is an emergency and may require additional surgery.
• The channel may become dilated and not self-seal after each catheterization. This can lead to leaking urine.
• The appendix and the colon normally produce mucus to ease the passage of food through the body. When the appendix or part of the colon is used to create the channel in the Mitrofanoff procedure, they still behave like an appendix or like a colon – they continue to produce mucus. Sometimes excessive mucus in the channel makes it difficult to self-catheterize. To treat this, you may need to irrigate the channel daily. This means extra work to maintain the channel. This can also lead to electrolyte imbalances in the body.
• As with any catheterization program, the risks for recurrent urinary tract infections, bladder stone formation, and bladder cancer are increased.

Mitrofanoff and pregnancy 

Pregnancy after having the Mitrofanoff procedure is possible. You will want to work with your doctor during your pregnancy to make sure the channel stays open for self-catheterization while the fetus develops.

Because the appendix or part of the colon is used to create the channel (the urine has been exposed to segments of intestines), the results of a urine pregnancy test may not be accurate. You will need to confirm the pregnancy with a blood test at your doctor’s office.

Due to the complexity and number of abdominal surgeries that have occurred with the Mitrofanoff procedure, a C-section delivery should be considered. However, a vaginal delivery is possible, too. You will want to work closely with your doctor to develop a birthing plan that is safe and appropriate for you.

Other considerations

After the Mitrofanoff procedure, you will need to get yearly exams to check the health of your bladder. These exams may include:

• Annual cystoscopy
• Annual Renal Ultrasound
• Annual X-ray of Kidneys, Ureters, Bladder (KUB)
• Blood tests to evaluated your electrolytes, kidney function, and liver function

You will also need to wear a medical alert bracelet. In case of an emergency, this bracelet will let your healthcare providers know where the Mitrofanoff channel is located and if this is the only place to catheterize you.

What is Osteoporosis?

Throughout our lives our bones continually break themselves down and rebuild themselves. In the process, several vital minerals – especially calcium – are lost and then replaced. For Rick and others with osteoporosis, the breaking-down process happens faster than the rebuilding, and the net loss of minerals causes bones to become brittle. Fractures can happen for almost no reason – during range of motion, after a minor fall, even after a bad spasm. Hip bones (femurs) are often affected, but so are the back bones (vertebrae) and wrist bones. Osteoporosis can limit your function, and if your sitting posture is affected, it can increase your risk for skin and respiratory problems.

The SCI Angle:

Osteoporosis occurs in almost everyone who ages. However, in the non-disabled population, older women who have gone through menopause have many more problems with osteoporosis than men. With spinal cord injury, it’s a different story.

Soon after the injury – regardless of your age or your sex – bones begin to lose minerals and become less dense. Why? We don’t know for sure, but we have some theories. First, all the things that are risks for osteoporosis in non-disabled people are risks for spinal cord injury survivors, too. These risks include:

• Diabetes
• Use of certain medicines (eg, antidepressants, warfarin (coumadin), long-termheparin, corticosteroids, thyroid medicine, anticonvulsants, antacids)
• Being thin or having a slender physique
• Light-skinned or fair-haired
• Calcium or Vitamin D deficiency
• Smoking
• Having had scoliosis
• Excessive alcohol or caffeine use

• Following a diet extremely high in fiber or protein or low in calcium
• Certain medical conditions: Stomach surgery or weight-loss surgery
• White or Asian descent

Second, SCI itself seems to pose additional risks. New spinal cord injuries tend to keep people in bed, and osteoporosis and inactivity go hand in hand. We also know that bearing weight on bones helps keep them strong, but many survivors who use wheelchairs go years without putting much weight on their legs. Also, researchers believe that there is something about the SCI itself – something in addition to not being active and not bearing weight. That something is a change in the autonomic nervous and circulatory systems. One reason this is suspected is the speed at which osteoporosis appears. Within days of injury, the body starts dumping out minerals, primarily in the urine. This tells us that bone is being broken down. And, these chemicals are dumped in a different order and at a different pace than in non- SCI persons on bed rest.

The Good News:

The rapid bone loss that starts after your injury usually stops at about two years; people injured 30 to 40 years really don’t have any more osteoporosis than those hurt less than a decade. And, just because you have osteoporosis, doesn’t mean you’ll have a fracture. Only about 1% to 6% of SCI persons have brittle- bone related fractures. That may seem to be a lot, but statistically the odds still are in your favor.

How Do You Diagnose Osteoporosis?

Osteoporosis can be diagnosed through blood work, urinalysis, and high-tech procedures:

• Dual-energy X-ray Absorptiometry (DXA scan) – Measures bone density in the entire body. It is the preferred test for diagnosing osteoporosis and can be done yearly to measure the rate of bone deterioration.
• Single-energy X-ray Absorptiometry – Measures bone density in the arms and legs only
• Ultrasound Bone Density – Measure bone density in the fingers, heels, and leg bones

But doctors don’t agree on which test is best or on how aggressively to pursue diagnostics. Why? Too often these tests cost a lot of money and only tell us what we already know: if you have a spinal cord injury, you have some bone thinning.

Frequently they fail to tell us what we need to know: will you be one of the survivors who actually have a fracture. If it turns out that you actually do have a fracture, then your physician may choose to do tests to get a sense of your risk for future fractures and to rule out other possible causes for your fracture.

What’s the Treatment?

Unfortunately, you probably can’t cure osteoporosis. The general consensus is that you can’t bring lost minerals back into bones. But, there probably are things you can do to help to keep your bones from getting more demineralized:

• Increase your physical activity – especially with weight-bearing or resistance exercises. FES bike and the standing frame are not enough.
• If you’re a woman who has been through menopause, estrogen supplements might help. If your doctor prescribes these, be faithful in your checkups, for estrogen has side effects.
• For men and women alike, there are other drugs that might be available.

o Fosamax and all the biphosphates have been proven effective in the general population and is FDA approved for the treatment of osteoporosis. However, you will need to be able to sit up after taking them to prevent reflux.

o Raloxifene (Evista), Calcitonin, Fluoride, Teriparatide, Denosumab (Prolia) are other drugs commonly used to treat osteoporosis.

• You can eat more calcium – milk, ice cream, shellfish, etc. If you are unable to get enough calcium through your diet, talk with your doctor about starting a calcium supplement. There are different types of supplements; Calcium Citrate is absorbed better in the body.
• Get more Vitamin D – Your body makes vitamin D from sunlight exposure and from the eating foods like fish and green leafy vegetables. Talk to your doctor before taking a supplement.
• Quit smoking. It speeds up bone loss.
• Limit alcohol. It also speeds up bone loss.
• Have good posture – sit up straight.
• Prevent falls.

A few words about spasticity: Spasms exert force on bones. Like weight-bearing, this should maintain bone strength. The fact that people without spasticity often have more problems with leg fractures– and people with spasticity have less — seems to verify this. However, at the same time, spasms themselves have caused bones to break. The message here is that some spasticity is good; too much is bad. Also, if you haven’t stood or used your standing frame in several years, check with your practitioner before you stand as you may be at an increased risk for fractures.

Standing Watch on the Fracture Patrol:

Sometimes osteoporotic fractures just happen, even without serious trauma. Don’t worry too much about this happening to you; be a little more careful. Remember: take your feet out of the heel loops or toe straps on your foot rests before transferring; when in bed, move slowly as you turn or come to sitting if your legs are already bent, crossed, or twisted.

What If I Think a Bone Has Broken?

Stay calm. Usually a broken bone is not an emergency; you probably do not need an ambulance. When might it be an emergency?

• If you’re prone to autonomic dysreflexia and you’re having symptoms.
• If you’re in incredible pain.
• If the bone has poked through the skin, or if it hasn’t poked through the skin, butit looks like there’s a lot of bleeding under the skin.
• If there has been much and rapid swelling.
• If you feel light-headed, nauseated, or otherwise really “crummy.”

Even if you decide it’s not an emergency, call your doctor. You’ll need an X-ray as soon as possible. Treat the bone gingerly; don’t try to line it back up the way it was before. If it’s your leg, avoid twisting it more. Elevate it if you can. If it’s an arm, keep it positioned in close to your body. Don’t struggle into socks, pants, sweaters that will be hard to get off later – but do get enough clothing or blankets on you to stay warm. If you live alone, this would be a good time to call a friend to help you to the doctor’s office!

Remember: although osteoporosis and spinal cord injury is a fact of life and the risk is very real, most survivors are not breaking bones. Thousands have made it to ripe old ages without fracturing anything. The odds are in your favor.

Personal Care Assistance: How Much Help Should I Hire?

There are lots of reasons why people with disabilities decide to get more help. Some don’t have a choice – because of the extent of their disabilities, because of their family situations, because of other health issues. Some don’t have time to do all of their personal care, homemaking, and other tasks themselves. And some just plain don’t want to do these things themselves! However, regardless of the reason for getting help, most people prefer to have the entire caregiving and care receiving process as short and undisruptive as possible.

Get organized

One good way to minimize disruption and to keep caregivers from becoming the focus of your life is to get organized. You need to figure out just how much help you need. Doing this is a two step process.

First, you’ll want to consolidate tasks so you’ll need as little help as possible. Remember: assistants and helpers get paid by the hour. Then, you’ll want to actually “do the math” and figure out just how much help you really need.

Preserving the Important Stuff… 

Decide which end of your day – morning or evening — is most important to you. When do you need to be on time? When does your performance matter most? If you work outside the home, chances are your mornings are pretty important. If you don’t go to a specific job or if you don’t need to be up and going early, it could be that the evening, when you’re spending time with family or friends, is your most important time of day.

Regardless of how much assistance you’re going to need, keep this important part of your day as free of tedious time consuming chores as possible. If the morning is your important time, move showers, bowel programs, leg bag cleaning, and so on, to the evening. Then, when you get up, just do the basics – dressing, washing, teeth brushing, etc. Save the big, hard things for later.

On the other hand, if you want to be able to spend an uninterrupted evening with your family and kids, if you like to “surf the net” into the wee hours, or if you’re a party-animal, keep your evenings uncluttered and move all those time-consuming routine tasks to the morning. Then, when you’re ready to hit the hay, you can do it in five or ten minutes, after just brushing your teeth, pulling off your clothes, and sliding into bed.

Regardless of which end of the day is most important to you, the goal is this: during that time, do everything you can to minimize the number of things you have to do, and the amount of time it takes to do them.

Consolidate 

Next, think about ways to streamline things:

• Can you move tasks to different days of the week to balance the work load more evenly, or even to eliminate the need for help entirely on one or two days?
• Can you brush up on some of your own independent living skills so you need even less help?
• If getting your feet up onto the bed is all that keeps you from getting into bed independently, work with a therapist to see if you can master this task.
• If leg bag connections are the problem, look at equipment modifications that might make things easier.

It might seem like everything has gotten moved to one time of the day, but keep in mind: you’ve got 7 days in a week, 30 in a month!

• Have whoever helps you do more than one thing at a time. Once you’ve gotten started on your bowel care, or while you’re in the shower, could your lunch be made? Could your bed and equipment be prepared?
• Move tasks around so that the easy uncomplicated tasks are clumped together so a friend, partner, or even younger sister or brother could handle them.
• Consider equipment or modifications so you can do more for yourself. Dressing loops? Velcro? Those lamps that you turn on by clapping?

Now, do the math….

You need to calculate just how many hours of help you’ll need per week. Below is a check list that people with spinal cord injuries have used to help them calculate their needs:

A (hopefully) useful example: 

There are hundreds of ways to consolidate, and some people have been able to group tasks to such an extent that they can eliminate either their morning or their evening assistant.

For example, Dave, who has quadriplegia, made these simple changes to his routine:

• He realized that as a student, evenings were his most important time. So, he switched his showering, hair washing, and bowel care to the morning.
• He had Velcro adapters put on his shoes.
• He replaced his blue jean snaps with Velcro.
• He had his morning helper pre–place his skincare padding on his bed, sterilize the night-time urinary drainage system, and re-set it up with the top end and the connector placed on the bed where Dave could reach it.
• He had his bed moved so he could easily reach the pull cord for his light – as well as his phone.
• He had his morning helper tuck the blankets along the side of the bed that was against the wall, rather than at the foot of the bed.

When evening rolled around and Dave didn’t want to have to go to bed on someone else’s schedule, he was able to do the bare minimum for himself and get himself into bed and safely “tucked-in” for the night.

Does this mean that everyone who re-organizes and consolidates enough will be independent and safe on their own? No, but just about everyone can make his or her care less complicated, less disruptive, less costly, and less time consuming. And, that’s a lot!

Personal Care Assistants: How to Find, Hire & Keep

You’ve wrestled with the issue of attendant care, and decided that it’s finally time to get some help. Or perhaps a present caregiver is getting older, and needs some relief. Maybe you’re just feeling older yourself. You’re in good company: over 40% of all people with spinal cord injury (SCI) use some form of assistance, and the percentage increases with age. For first-time personal care attendant (PCA) employers, here are some tips for maintaining freedom, flexibility and control, and saving money to boot.

Organize

First, get organized. Decide which end of your day is the most routine and requires the least spontaneity or flexibility. Are you a morning person or an evening person? Once you’ve decided, move most of your labor-intensive personal care chores into that part of your day — such as showers, bowel and bladder care, hair washing, and laundry. A morning person might have a PCA provide just the bare minimum to get the day started — perhaps washing, dressing and tooth brushing — and save the big things — maybe bowel care and shower — for the evening shift when time is not at a premium. An evening person can do the opposite.

Consolidate

Next, figure out how to combine the help you need each day into a few — maybe only one or two parcels of time.

• Can the laundry be started when the PCA arrives, and then put in the dryer when he or she leaves?
• Can lunch be made up ahead and left in the refrigerator so you can get it yourself later?

There are hundreds of ways to consolidate, and some quadriplegics have been able to group tasks to such an extent that they can lay off the evening attendant. Examples: they’ve had pads preplaced on their beds, worn elastic-waist pants that are easy to take off, and learned to hook their drainage devices into a night bag that has already been set up for them – by the early morning PCA, of course.

Community Resources

• Independent living centers can often teach you how to be an effective employer and manager of attendants, and many will also help you recruit and interview them.
• A nearby college may have a disabled student services program, or even a PCA pool.
• Try the National Spinal Cord Injury Association chapter in your area, or ask at a local rehabilitation center.
• And check out your library. One comprehensive text is Home Health Aides: How to Manage The People Who Help You, by Al DeGraff

Money Matters

How will you pay your attendants? Will your insurance pay at least part? Can you afford to pay them yourself? Now that you’ve organized and consolidated all of the tasks, it might not be as expensive as you thought.

• If cash flow is a problem, can you offer room, board or access to a vehicle in return for services?
• Can you tutor the PCA’s children?
• Can your church or service club provide volunteers?
• Have you fully informed yourself about the help available from Medicaid? Ask about Medicaid waivers, which sometimes allow payment for services given in the community.
• Have you thought about hiring college students? They are young, able bodied, have flexible schedules, and need money. Call the student employment office for recruiting suggestions.
• Of course, there are also friends and family members, paid and unpaid. Using a friend/relative/lover as a PCA is a path fraught with peril, but many people manage it.

Be creative—there are lots of ways to find help, and not all of them require big money. Keep in mind that you’re responsible for taxes, social security and workers compensation for your employees. This is a sticky wicket for many employers, and a good reason to ask for expert advice.

Write a Contract

Outline — in great detail — all the tasks that need to be performed, what you will expect of the attendant and what he or she can expect of you. Include items like hourly rate, the rate for portions of an hour worked, whether and what you will pay the PCA if you must cancel, your expectations if the PCA cancels, grounds for dismissal, how much notice each of you needs to give the other, and any other potential problem that you can foresee. Books are available that make this process easier (see resources). Both you and your PCA should review and sign the contract, and keep a copy on hand. It will protect both of you.

Recruiting

Will you hire through a home health agency? If yes, be prepared to trade some control, especially in terms of choice of providers, for the convenience and, in some cases, the extra reliability and higher level of training they provide.

If you plan to hire your own PCA, consider your avenues for getting the word out: newspapers, college bulletin boards, churches and guidance counselors at high schools, junior colleges and vocational schools.

When you interview applicants, be prepared to describe – exactly — what the job will entail. At the same time, try to learn as much as you can about the applicants—especially their long term goals, attitudes toward people with disabilities, past work history and reliability.

Although it’s logical that people who “really want to help others” make good attendants, the person who wants the job “because I really need the money” may be as reliable and more open to working on your terms. One other thing: even if you need very little care, if it’s care you must have, hire more than one PCA, and possibly several. Always have a backup in place.

Keep Your PCA Happy

Long term spinal cord injury survivor and author Al DeGraff (2002), in Home Health Aides: How to Manage the People Who Help you, lists the top ten reasons PCAs quit their jobs:

1. Their initial job description was incomplete or keeps changing.
2. The method and order in which they must perform their duties are illogical, inefficient, and waste time.
3. Their working environment is messy, unpleasant, disorganized, etc.
4. They’re not paid enough, don’t get appropriate raises or don’t feel their work is appreciated.
5. They feel another PCA is favored over them.
6. Theemployer(YOU)iseithertoopassiveortooaggressiveinhis/herstyleof interaction.
7. The employer is dishonest about the hours worked, the salary owed, or has inappropriate expectations such as monetary loans or sexual favors.
8. Thereareunreasonableduties–thosethattheemployerisabletoperformalone, those which cannot be performed in the allotted time, or those which are too tightly supervised.
9. The employer is intolerant of honest mistakes, the need for sick time, etc.
10. The employer doesn’t respect PCA’s personal life and expects that his or her needs should take priority over all else in the PCA’s life (p. 456-457).

What is Tethered Spinal Cord?

Post-traumatic tethered spinal cord is a condition that can occur following spinal cord injury and can result in progressive deterioration of the spinal cord. Post-traumatic tethered spinal cord is a condition which occurs following injury to the spinal cord where scar tissue forms and tethers or holds the spinal cord to the soft tissue covering which surrounds it called the dura. This scar tissue prevents the normal flow of spinal fluid around the spinal cord and impedes the normal motion of the spinal cord. Myelomalacic (softening or increased water content) changes may then occur in the spinal cord. Tethering of the spinal cord has been suggested as a pathophysiological cause for the formation of cysts or syrinxs in the spinal cord. A post-traumatic tethered cord can occur without evidence of syringomyelia; however, in our experience, post-traumatic cystic or syrinx formation will not occur without some degree of tethering of the spinal cord. Post-traumatic tethered cords and syringomyelia are treated surgically when a complex of clinical symptoms occurs.

Signs and Symptoms

The clinical symptoms for a post-traumatic tethered cord may include:

• Progressive loss of sensation or strength
• Hyperhidrosis (profuse sweating)
• Spasticity, pain, autonomic dysreflexia (labile blood pressure)
• Horner’s syndrome (dilated pupil).

Deterioration of the spinal cord related to these myelopathies can occur above and/or below the level of injury. Sensory and motor symptoms are a result of changes occurring in the spinal cord, and are directly related to the specific location of these changes in the spinal cord. In other words, if changes occur above the level of injury preserved function is affected. Patients may experience a slow and progressive loss of the ability to feel hot or cold water on their skin or develop hypersensitivity, so that touching the skin causes pain. This change in sensation occurs in areas where the patient previously had normal or impaired sensation. Loss of strength can be described by patients as the inability to use certain muscles that were previously present and/or the development of fatiguing muscle groups which interferes with function. For instance, patients often say they have difficulty wheeling their chair the same distances or performing repetitive motions for the same amount of time.

Hyperhidrosis or profuse sweating can occur anywhere on the body and occurs without a specific cause. Patients can develop the new onset of spasticity, or spasticity can worsen, unrelated to other issues such as a plugged catheter, skin breakdown, or bowel program.

The onset of new pains or the worsening of pains that were present at the time of injury may occur. Secondary to these pains, patients report various types of symptoms, including burning, stinging, stabbing, sharp, shooting, electrical, crushing, squeezing, tight, vise-like cramping pains. These pains generally occur in areas where patients have lost sensation or where sensation sense is not normal.

Autonomic dysreflexia is described as an over-activity of the autonomic nervous system in response to stimuli. This can result in rapid swings in blood pressure, blotchy skin or goose bumps and sweating. These symptoms can be present unrelated to a stimulus or begin occurring at times when they had not before (i.e., bowel programs).

The Horner’s syndrome usually presents as one pupil appearing smaller than the other pupil, and can switch from side to side. This symptom is not always present and can occur at the time of a spinal cord injury.

Surgical Treatment for Post-Traumatic Tethered Spinal Cord 

Surgical intervention for post-traumatic tethered cord is an option when patients are experiencing progressive loss of sensory and/or motor function. If medical management of pain, spasticity, autonomic dysreflexia, and/or hyperhidrosis has been unsuccessful, surgical intervention may be considered. The surgery involves removing bone in the back of the spine to get to the dura- the covering around the spinal cord. We use ultrasound to identify the area of scar tissue formation and then open the dura and release the bands of scar tissue to restore spinal fluid flow and motion of the spinal cord. The dura is then closed using an expansion duraplasty- a graft placed to enhance the dural space and decrease the risk of re-scarring.

What is Post-Traumatic Syringomyelia (cyst/syrinx)?

Post-traumatic syringomyelia is a condition that can occur following spinal cord injury and can result in progressive deterioration of the spinal cord. Postraumatic syringomyelia involves development of a fluid-filled cavity (called a cyst or syrinx) within the spinal cord following a spinal cord injury. Tethering or scarring of the spinal cord has been suggested as a pathophysiological cause for the formation of a syrinx or cyst in the spinal cord.

A post-traumatic tethered cord can occur without evidence of syringomyelia; however, in our experience, post-traumatic syrinx or cystic formation will not occur without some degree of tethering of the spinal cord. Post-traumatic syringomyelia is treated surgically when a complex of symptoms occurs.

Signs and Symptoms 

The clinical symptoms for syringomyelia may include:

• Progressive loss of sensation or strength
• Hyperhidrosis (profuse sweating)
• Spasticity, pain, autonomic dysreflexia (labile blood pressure)
• Horner’s syndrome (dilated pupil)

Deterioration of the spinal cord related to these myelopathies can occur above and/or below the level of injury. Sensory and motor symptoms are a result of changes occurring in the spinal cord, and are directly related to the specific location of these changes in the spinal cord. In other words, if changes occur above the level of injury preserved function is affected. Patients may experience a slow and progressive loss of the ability to feel hot or cold water on their skin or develop hypersensitivity, so that touching the skin causes pain. This change in sensation occurs in areas where the patient previously had normal or impaired sensation. Loss of strength can be described by patients as the inability to use certain muscles that were previously present and/or the development of fatiguing muscle groups which interferes with function. For instance, patients often say they have difficulty wheeling their chair the same distances or performing repetitive motions for the same amount of time.

Hyperhidrosis or profuse sweating can occur anywhere on the body and occurs without a specific cause. Patients can develop the new onset of spasticity, or spasticity can worsen, unrelated to other issues such as a plugged catheter, skin breakdown, or bowel program.

The onset of new pains or the worsening of pains that were present at the time of injury may occur. Secondary to these pains, patients report various types of symptoms, including burning, stinging, stabbing, sharp, shooting, electrical, crushing, squeezing, tight, vise-like cramping pains. These pains generally occur in areas where patients have lost sensation or where sensation sense is not normal.

Surgical Treatment for Post-Traumatic Syringomyelia 

Surgical intervention for syringomyelia is an option when patients are experiencing progressive loss of sensory and/or motor function. If medical management of pain, spasticity, autonomic dysreflexia, and/or hyperhidrosis has been unsuccessful, surgical intervention may be considered. The surgery involves removing bone in the back of the spine to get to the dura- the covering around the spinal cord. We use ultrasound to evaluate the extent and size of the syrinx. As in the spinal cord untethering surgery, we release the scar tissue from the surrounding dura to restore spinal fluid flow and motion. We again ultrasound to evaluate the syrinx. In our experience, 80% of the time the syrinx collapses with the untethering; 20% of the time a small tube called a shunt is placed within the syrinx cavity to drain the fluid. Like the untethering surgery, the dura is then closed using an expansion duraplasty- a graft placed to enhance the dural space and decrease the risk of re-scarring.

The Take Home Message:

People with SCI need to be aware of changes in sensation, function, pain, and strength. With any change, speak with your doctor and report changes early. Be proactive in your health – losing function or sensation can lead to other problems.

Posttraumatic neuropathic pain is a condition that can occur after a spinal cord injury and can sometimes be referred to as central neuropathic pain, central deafferent pain or neurogenic pain. These are pains generated by the injured spinal cord itself. Following spinal cord injury, patients can experience pain in areas of the body where they do not have normal sensation. These pains can occur anywhere at or below the level of injury. Patients classically describe these pains as burning, stinging, stabbing, electrical, sharp, shooting and/or squeezing, tight, pressure, and vise-like. These pains may present at or very near the time of the injury or may occur later (one to many years after the time of injury). The first line of treatment for these kinds of pains is medication. Typically antidepressants or antiseizure medications are used to treat these pains. If medication is not successful, neurosurgical intervention may be an option.

Surgical Options for Neuropathic Pain 

Spinal Cord Untethering: When pain starts more than a year after injury or is getting progressively worse over time, and medications are not helpful, spinal cord untethering surgery can be an option. See Posttraumatic Tethered Cord and Syringomyelia Section on this website.

Computer-Assisted Dorsal Root Entry Zone Microcoagulation: This surgery is performed on the paraplegic population for burning, sharp, electrical, stabbing, pins-and-needles, and “aching” pains which occur at or below the level of injury. It involves electrical recording inside the spinal cord at the time of surgery to identify regions of abnormally active pain-producing nerve cells. These abnormal nerve cells are then destroyed with radio frequency heat lesions. Because this surgery is partially destructive to the spinal cord, it is performed on spinal cord injured patients with minimal to no function below their level of injury.

You may find it harder to sit up straight at the table. You may notice a certain crookedness when glancing in a mirror or store window. The lower back pain or forward lean seems to have gotten worse over the past year. Or your back just seems constantly tired. These symptoms all point to posture problems, which are common with both aging and SCI. Getting older with SCI? Pay attention… 

The Problems…

Many posture problems are associated with SCI, ranging from chronic pain and fatigue to scoliosis and kyphosis, as well as skin and respiratory problems. Just like the problems, the causes are numerous:

• Lack of trunk muscles puts the body in a constant slump
• Muscle imbalance, gravity, or spasticity pulls us to one side or the other
• Inactivity or lack of exercising drastically decreases physical fitness, leaving us fatigued or in chronic pain
• Habitual functional activities done the same way every day, such as hooking the same arm on the chair back for support, can cause contractures and severe muscle imbalances
• Poorly fitted equipment — wheelchair, cushion, or back — places the body in a poor position

When left un-addressed, the problems magnify, possibly causing worse problems. Sitting crooked means uneven weight distribution and possible skin sores. Slumping or slouching makes the lungs work harder, compromising respiratory function. Poor posture while sitting or wheeling puts extra strain on the neck and spine, causing pain and discomfort. The more slumping or leaning or slouching, in response to pain, the more pain or fatigue that is produced.

Evaluation:

Determining whether you’ve got a problem may be as easy as asking, and honestly answering, a few questions:

• Do you have chronic pain in the neck, lower back or trunk?
• Is your fatigue more in the trunk and back, rather than in your arms or shoulders?
• Do you sit crooked? Are you leaning to one side or the other? Is one hip higher than the other? Is one hip or knee more forward than the other?
• Are you always leaning a bit forward or is balance a problem?
• Do you have breathing problems or trouble getting full breaths?

Thinking about these questions is a good first step. Answering yes to any means you may need to go further.

Looking at how you’re sitting is a good second step. Get someone to help. When facing a mirror, is more of the chair back visible on one side or the other? When viewing a profile, does your ear lobe, shoulder joint, and hip joint form a straight vertical line above the chair axle?

Remember: living in our bodies day to day makes it difficult to always recognize small changes which can result in big problems. You may need to make a conscious effort to observe and evaluate how you sit.

The third step is seeking the opinion and evaluation of a physical or occupational therapist or physician trained in spinal cord injury.

Getting Straight:

Changes in the body often require new or different equipment. “Gravity is not your friend,” says Craig Hospital physical therapist Cindy Smith. Lack of trunk muscles, or just minor trunk muscle imbalances can, over the course of years, cause major problems with posture. Smith compares the spine to building blocks. Stack them slightly off kilter and they’ll probably be okay. Put some weight on them and problems develop over time.

Eventually, gravity takes its toll and the price is poor posture, chronic pain, decreased energy, and skin problems. We can address the problems in a number of ways — what we sit in, what we sit on, and possibly even the types of weight shifts we do.

Starting at the bottom and working up, many solutions exist to address posture problems:

• New or modified cushions can ensure proper weight distribution and begin to solve hip unevenness.
• Solid chair backs can provide the support necessary to compensate for weakness in the trunk.
• Lateral supports, or “wings,” will serve to support the trunk and keep it straight.
• Chest belts can ensure stability and help with balance.
• Corsets can counter act muscle imbalances, straighten out the trunk, reduce fatigue, and assist with balance.

One, several, or all of these solutions can be used to deal with poor posture.

The Payoffs:

There are rewards for making these changes: reduced fatigue and thus more energy, decreased pain, fewer skin problems, reduction of spinal curvature or slanting hips and, in general, an overall better and more “normal” appearance.

Wearing a corset may provide the trunk stability necessary to make sports or other activities fun rather than work. Lateral supports and a chest belt may reduce pain and fatigue enough to make sitting at a desk for hours feasible and thus make employment possible. Proper posture leads to even weight distribution, fewer potential skin problems, and safer driving. Proper posture affects our body physics and places us in a more efficient wheeling position.

And not all the effects are physical. Posture is often a reflection of how we feel about ourselves. Sitting up straight speaks forcefully to others about our confidence, competence, and self-image in general. Height, whether sitting or standing, is related to self-esteem.

Everyone ages, and as they do their bodies change. Responding to these changes with appropriate equipment can allow us to avoid future problems and enjoy ourselves as we age.

When someone has a spinal cord injury, they are at a higher risk of getting a pressure sore, or decubitus ulcer. But what is a pressure sore, how does one develop, and how can you prevent them? The video discusses the basics of what you want to know about pressure sores and SCI.

What is it?

Purple urine bag syndrome, or PUBS, occurs when urinary catheters and bags become a purple color. The urine can be normal yellow color or it can be purple, too.

What causes it?

The cause of the purple color is not known – there is no scientific evidence to explain why this happens. Research so far does not show it is related to the type or brand of urine bags or catheters used – it can occur in all catheters.

However, there are many theories about why it occurs. Some people believe different bacteria in urine create the purple color. It has also been reported that a slowed-down gut is enough to increase the chances of developing PUBS. Others believe it is caused by a change in where tryptophan, an amino acid found in many foods, is broken down in the body.

Normally, tryptophan is broken down in the small intestines and any extra moves to the large intestine. With constipation or a slowed-down gut (commonly found in people with spinal cord injury), tryptophan stays in the system longer. Once in the large intestine it is believed that bacteria reacts with tryptophan to create red and blue dyes – when red and blue are mixed they make purple! The degree of purple depends on the unique concentration of red dye and blue dye produced – sometimes it is more blue, sometimes more red, and sometimes it is a shade of purple.

What are the signs and symptoms?

Aside from discoloration in the urine bag, catheter, or urine, the signs and symptoms of PUBS can be similar to those of a urinary tract infection and include:

• Increased spasms
• Autonomic dysreflexia
• Mild lower back pain or other aches
• Fatigue
• Fever or chills
• Urinary leakage or having to catheterize more often
• Nausea
• Headache
• Blood or sediment in the urine
• Cloudy urine or a foul odor to the urine

Who is at risk?

People who use indwelling urinary catheters are at risk for developing PUBS. The longer a catheter or a urine bag is in place, the darker the purple color may become. Other factors that might increase the chance of developing PUBS include constipation and dehydration.

How do I prevent it?

The cause of PUBS is still unknown, and there is no foolproof way to prevent it. Here are a few suggestions:

Avoid Urinary Tract Infections (UTIs)

The best way to prevent a UTI is to drink lots of fluids. Drinking at least 2000 to 3000 ml of water every day is important. This is equivalent to about 8 to 12 eight-ounce glasses or about 3 quarts of water every day. It is best to avoid beverages with sugar, caffeine, and alcohol. These drinks may increase bladder irritation and contribute to UTIs.

Some people believe that cranberry pills can help reduce UTIs by changing the chemistry of the urine and stopping bacteria from clinging to the bladder wall. Clinical research on the effectiveness of cranberry is mixed – some studies support the use of cranberry and some studies do not. However, many people report a deceased frequency of UTIs when using cranberry pills.

If you decide to take cranberry to help reduce the number of UTIs, we recommend taking the cranberry pill and not cranberry juice. Cranberry juice contains a lot of sugar and calories. Blended juices (crangrape, cran-apple, etc.) do not offer enough cranberry ingredients to have any benefit.

Sometimes your doctor will recommend vitamin C, which can make your bladder more acidic, which can help prevent or treat UTI. Talk with your doctor about any medications or herbal supplements before taking them.

If you have an indwelling catheter, in general, it should be changed on a monthly basis. It may need to be changed more often if you get frequent UTIs or produce a lot of sediment or crystals in your urine. Talk with your doctor about a schedule that is right for you.

Keeping the catheter and insertion site clean is also very important. If you have an indwelling catheter, clean the catheter and the insertion site in the morning and at night with soap and water.

Maintain a regular bowel program

A healthy functioning bowel program is a combination of many factors. The primary goal of bowel management is to promote regular emptying of the bowels for cleansing and health. In addition to establishing a consistent bowel program, attention to diet and fluid intake, activity, and medications all play a part in maintaining bowel health.

• Establish a set time to do the bowel program each day.
• Take the same medications daily as prescribed by your doctor. Medications you take for your bowel program need to be taken at the same time and in the same dose daily – your body does not like surprises!
• Establish a routine for the bowel program. If you do digital stimulation or use a suppository, do this every day and in the same order.
• Eat a diet high in fiber. 20 to 25 grams of fiber daily is recommended, but no more than 35 grams of fiber per day.
• Drink water. Drinking at least 2000 to 3000 ml of water every day is important. This is equivalent to about 8 to 12 eight-ounce glasses or about 3 quarts of water every day.
• Maintain a regular diet. Avoid caffeine, alcohol, and foods that upset your stomach.
• Establish a regular exercise routine and stick with it. Activity plays a vital role in moving food through the GI tract.

Stay Hydrated!

We humans are more than 60% water. We begin to get dehydrated and our performance drops off with just so much as a 2% water loss. What can cause water loss? It doesn’t take much. It can happen to an athlete who is competing, to a person who is in bed with the flu or diarrhea, to someone in very hot weather, or even to someone who just doesn’t drink enough.

Dehydration has been associated with PUBS. When you are dehydrated, your kidneys aren’t able to function properly; waste products will back up in your body, making you feel generally crummy.

We have said it before and we will say it again: Drinking at least 2000 to 3000 ml of water every day is important. This is equivalent to about 8 to 12 eight-ounce glasses or about 3 quarts of water every day. You may think, “That’s a LOT of water,” and you’re right! There are, however, great benefits to constantly flushing out your kidneys and bladder, including prevention of UTIs, prevention of constipation, and prevention of dehydration – three factors commonly found with PUBS.

Final thoughts…

If your urinary catheter, urine bag, or urine turns a blue or purple color, see your doctor. Since the cause of purple urine bag syndrome is unknown, getting a thorough assessment by your doctor will help find a solution and treatment.

The respiratory system is a collection of organs that are essential for the process of breathing. In this video, you will learn more about the primary organs of the respiratory system and their specific role for the breathing process.

How has SCI affected my sexual function?

A spinal cord injury changes many parts of the body. This is especially true for those body parts that are at or below the level of the injury. SCI can change the way your bladder and bowel function. Your SCI has most likely changed your sexual function. This can be changes in sensation, the ability to achieve orgasm, or the ability to get and maintain an erection. For many men, having an erection is one of the first questions on their minds.

Will I be able to get an erection?

Erections are a combination of nerve stimulation (touch) and a vascular (blood flow) response. Changes in sexual function depend on level of injury and if the injury is complete or incomplete. Each person’s function will be affected differently, so it is important to understand the basics of how erections happen.

The three types of erections and how they are affected by SCI

• Psychogenic: This type of erection may come from sights, sounds or thoughts that are arousing. For many men after SCI, having an erection by just thinking about something sexy may not work so well. This is because the area of the spinal cord responsible for psychogenic erections is located at T11 and below. When a spinal cord injury is above this level, the message from your brain cannot get through the damaged part of your spinal cord.
  For men that might be able to get a psychogenic erection, the penis often gets longer and fuller, but still may not be rigid enough for intercourse. Pay attention to what causes you to have an erection. It could be useful in the future.
• Reflexogenic: It is also called a reflex or spontaneous erection. This type of erection comes from physical touch or stimulation to your penis or genitals. Stroking, touching or caressing the penis can produce this response. The ability to get a reflex erection is controlled by nerves found in the lowest part of the spinal cord (S2-3-4). Reflex erections from touch are possible in most men with an injury at T10 or above. Psychogenic erections from arousing thoughts, sights or sounds are not usually possible.
  Some men with SCI may notice an erection when changing their catheter, cleaning their genitals or even when pulling clothes or blankets over their body. This stimulation to the penis may produce an erection even if it was not intended. Reflex erections can sometimes be brief and can happen at inconvenient times.
• Spontaneous/Nocturnal: If you have ever woken up with an erection at night or early morning without stimulation, you have had a spontaneous erection. These can occur during sleep or when your bladder is full. With men that do not experience erectile dysfunction these can occur 3-5 times per night on average. Some men after SCI may still get spontaneous erections during the night and/or in the morning. How long the erection lasts will help you determine its usefulness for sexual activity.

Things (besides spinal cord injury) that can affect erections

• Diabetes
• Medications
• Obesity
• High cholesterol
• Depression
• Tobacco use
• Alcohol use
• Treatment for prostate cancer
• MS or Parkinson’s disease

What can I do to help get and maintain an erection?

• Constriction bands (cock rings)
  • If you are able to get a full, firm reflex erection, using a constriction band can help keep the blood in the penis for a longer time.
  • Constriction bands are cheap and reusable.
  • Do not use metal rings or leave them on for longer than 20-30 minutes.
  • May cause some bruising, especially if you are on blood thinners.
• Vacuum Erection Device (VED/penis pump)
  • Helps to pull the blood into the penis by vacuum device.
  • Used with a constriction band (usually comes with the pump) to maintain the erection.
  • Manual (hand pump) or battery operated
• Medications
  • Viagra (sildenafil), Cialis (tadalafil), Levitra (vardenafil), Staxyn (vardenafil), Stendra (avanafil).
  • Medications do not cause an erection, they help an erection become more rigid or last longer.
    • DO NOT use with nitroglycerin products. The nitroglycerin ointment that is used for autonomic dysreflexia can cause an unsafe drop in blood pressure when used with these medications.
    • Take about an hour to take effect.
    • Potential side effects include headache, nasal stuffiness, flushing, low blood pressure and priapism. Priapism is when the penis stays erect for too long.
    • Most medications do not work well when taken with fatty foods, which take longer to digest.
    • Costs of these medications vary.
• Urethral suppositories (Muse)
  • A thin suppository with the medication Alprostadil, which helps relax the blood vessels of the penis causing increased blood flow into the penis and blood retention in the penis.
  • It is expensive. There is no generic form available.
  • It is not as effective as injections. It produces erection in 30-40% of men.
• Penile injection therapy
  • Any combination of one to four medications injected directly into the muscle of the penis. This relaxes the blood vessels of the penis, causing increased blood flow into the penis and keeps the blood in the penis.
  • Compounded or mixed medication has to be made at a special pharmacy that may not be available in some areas of the country.
  • It can be expensive. Cost varies based on pharmacy and the amount of medication needed.
  • It is highly adjustable in both quantity and concentration.
  • It is very effective, with an 88% success rate in SCI men.
  • It works within 10-15 minutes.
  • It is not affected by diet.
  • It can work for upper and lower motor neuron injuries.
  • Potential side effects include priapism, penile scarring, pain, bleeding at the injection site, bruising and infection.
• Surgically implanted prosthesis
  • This is a three-piece penile prosthesis.
  • Surgical risks (infection, anesthesia).
  • You cannot go back. The cylinders are placed in the muscle of the penis. This causes structural damage making it impossible to go back to achieving erections spontaneously or with other methods.
  • Has a risk of penile erosion.
  • Has a risk of mechanical device failure.
  • It is very predictable, natural feeling and has the appearance of erection.

Will I be able to ejaculate?

Like many other functions, ejaculation is affected by SCI. The process of ejaculation is even more complex than an erection. Very few men with a complete SCI have ejaculations.

Sometimes the spinal cord injury prevents the bladder neck from closing and semen will go into the bladder instead of out of the penis — this is called retrograde ejaculation. Retrograde ejaculation does not cause harm to you and the semen comes out with your urine.

Even if you think you are not able to ejaculate, there is still a chance that some semen may come out. You will still need to use birth control if you do not want to have children.

Will I have orgasms?

Your specific ability to have an orgasm after SCI is unknown but many people report they are able to have some form of orgasm after their injury. How that orgasm will feel or how your body will react is really up to you to explore and find out.

There are many parts of your body that can feel good and provide a pleasant sexual response. These areas of the body are called the erogenous zones and are not only in the genital area. Using all of your senses can also be helpful. Instead of focusing on what the penis can and cannot do, try experimenting with all of your senses.

For example:

• Verbal expressions, sounds or music can set the mood. Imagination can also be powerful.
• Consider sharing fantasies with your partner.
• Try looking at arousing images.
• Consider using candles, incense or perfume.
• Some people report heightened sensitivity in the areas where they can still feel, explore touch on the head, neck, lips, arms and nipples.
• Some people report increased ability to achieve orgasm through use of vibration. Using sexual devices and vibrators can be modified for people with limited mobility.
  • There are many types of vibrators and massagers. They can be helpful to use to explore your sensation and the ability to achieve orgasm. Some vibrators have been created for achieving ejaculation in SCI for collecting sperm. The Ferticare and Viberect are two. These vibrators tend to be expensive. They produce intense vibration that can be too stimulating at times for people with some sensation.
  • Some vibrators that are more readily available include The Fairy Wand, The Magic Wand and The Wahl Massager. For more information about sexual aides and devices, request a copy of the Patient Education document entitled ‘Pleasure Able.’
  • BE AWARE: the use of vibration can put you at risk for autonomic dysreflexia. Speak with your provider before using vibration. It is important to discuss how to evaluate and manage autonomic dysreflexia.

Satisfying your partner

Fears over changes in your sexual function after SCI decrease as you become more comfortable with your body. The more aware you are of your sexuality, the better you will be able to satisfy your partner. You may find there are other parts of sexuality that you and your partner enjoy more. The physical act of sex may not be as important as other aspects of sexuality.

What are the risk factors of having intercourse with SCI?

Autonomic dysreflexia (AD): AD is a rise in blood pressure resulting from a stimulus below your level of injury. You are at risk if you have an injury at T6 and above.

AD may occur during sexual activity. Here are some ways AD can be triggered:

• Rough stimulation of the genital area
• Using a vibrator for stimulation
• Ejaculation
• Orgasm
• Infection or inflammation of the testicles

If you experience AD symptoms during sex, immediately stop the activity. Put yourself into a sitting position. Be sure you have also removed all tight clothing, binders and compression hoses. If this does not stop the AD symptoms, call your medical provider or 911. Generally, the AD symptoms will stop after the activity stops.

You may want to discuss AD with your health care provider prior to having sex to develop a plan in case it occurs. If you are prone to AD, it may be wise to have Nitroglycerin Ointment 2% available. Speak with your provider further to get more education on this medication.

Bladder and bowel:

• Be sure to empty your bladder before any sexual activity.
• A suprapubic catheter can be taped to the lower abdomen to keep it out of the way and prevent pulling.
• Stick to a regular bowel program. Do your bowel program before sexual activity so your bowels are empty.
• Use a pillow or wedge under your pelvis to tilt it upward. This will aid in penetration and keep pressure off the bladder and lower bowel.

Skin care:

• Damage to skin from shearing, pressure or rubbing can happen during sexual activity.
• Padding and positioning can help prevent pressure and friction injuries.
• Monitor skin for redness and injury.
• Remove pressure from the area if anything develops.
• Use plenty of lubrication.
• Be sure to wash and dry the genital area with soap and water before and after sexual activity.

Do not forget…

All men should have yearly exams of the penis, prostate and testicles. This exam will monitor for changes, problems and cancer. When you call to schedule an appointment, ask if the office and examination table are wheelchair accessible. Also ask if staff members can assist with transfers, positioning and preparation for the exam. It is still possible to get sexually transmitted diseases such as herpes, syphilis and AIDS. Remember to use protection!

What is human sexuality?

“In the broadest sense, sexuality encompasses all the feelings, attitudes, and behaviors that contribute to a person’s sense of being a man or a woman both publicly and privately. Healthy sexuality represents a natural extension of affection, tenderness, and companionship between two people” (Firestone, Firestone & Catlett, 2006).

The physical act of intercourse is not all that defines your sexuality. When we talk about sexuality, we mean more than what goes on behind your bedroom doors. Sexuality is the intimacy between you and your partner, your preferences, your body image and desires.

The definition above is not usually what most people think of when they think of sex. This is especially true when people have experienced a spinal cord injury (SCI). Some questions that come up are:

• Does my SCI affect my sexual function?
• What kind of physical changes can I expect?
• Will I have orgasms?
• What do I do with my catheter during sex?
• Will I be able to satisfy my partner?
• What about bowel and bladder accidents?
• What are the risks of having sex?

How has SCI affected my sexual function?

A spinal cord injury changes many parts of the body. This is especially true for those body parts that are at or below the level of the injury. SCI can change the way your bladder and bowel function. Your SCI has most likely changed your sexual function as well. This can mean changes in sensation and ability to achieve orgasm. Initially there are also changes in your menstrual period, which can lead to questions about your ability to have children.

Can I still have sex after SCI? What can help?

People after SCI do not lose their sexual desire and can still have a rewarding sex life. Fears over changes in sexual function after SCI and concerns about satisfying your partner may decrease as you become more comfortable with your body and more aware of your own sexuality. You may also find that there are other parts of sexuality that may satisfy you and your partner more.

Having sex after spinal cord injury is a lot like having sex for the first time all over again. People who approach sex with an open mind and a willingness to experiment to find out what works and does not work after their injury tend to have the most success and reported satisfaction.

Many parts of your body can feel good and provide a pleasant sexual response. These areas of the body are called the erogenous zones and are not only in the genital area. Using all of your senses can also be helpful. Instead of focusing on what the body can and cannot do, try experimenting with all of your senses.

For example:

• Verbal expressions, sounds or music can set the mood. Imagination can also be powerful.
• Consider sharing fantasies with your partner.
• Try looking at arousing images.
• Consider using candles, incense or perfume.
• Some people report heightened sensitivity in the areas where they can still feel, explore touch on the head, neck, lips, arms and nipples.
• Some people report increased ability to achieve orgasm through use of vibration. Using sexual devices and vibrators can be modified for people with limited mobility.
  • There are many types of vibrators and massagers. They can be helpful to use to explore your sensation and the ability to achieve orgasm.
  • Some vibrators that are more readily available include The Fairy Wand, The Magic Wand and The Wahl Massager. For more information about sexual aides and devices, request a copy of the Patient Education document entitled ‘Pleasure Able.’
  • BE AWARE: the use of vibration can put you at risk for autonomic dysreflexia. Speak with your provider before using vibration. It is important to discuss how to evaluate and manage autonomic dysreflexia.

Orgasm and lubrication

There may be a need for a prolonged period of foreplay before orgasm, but orgasm is still possible. Studies found that 52% of women with SCI were able to achieve orgasm. Orgasm and lubrication depend on level of injury and if the injury is complete or incomplete.

Normally, your vagina will become moist to make intercourse easier. This is called lubrication. Your breasts will also become more sensitive and your nipples will become erect. After a spinal cord injury, your vagina may lubricate less and some women find it takes longer to have lubrication occur. Lubrication can be added by using a water-based, non-petroleum lubricant like K-Y Jelly.

Some water-based lubricants have glycerin in them, which tastes sweet but can sometimes lead to vaginal yeast infections.

Silicone lubricants are another option that are longer lasting and generally feel more natural, less sticky and can be used less frequently. Silicone lubricants do not taste good and should not be used with silicone sex toys as they can bond/stick to the toys. Both of these options are available over-the-counter. Using a lubricant will also help to prevent irritation to the vaginal tissues.

Oil-based lubricants such as baby oil or lotion are not recommended for vaginal use as they can cause bacterial vaginal infections, urinary tract infections and can cause latex condoms to fail.

All of these changes in sexual function depend on your level of injury and how complete the injury is. Each person’s function is unique and may not fit into the above descriptions.

What are the risk factors of having intercourse with SCI?

Autonomic dysreflexia (AD): AD is a rise in blood pressure resulting from a stimulus below your level of injury. You are at risk if you have an injury at T6 and above.

AD may occur during sexual activity. Here are some ways AD can be triggered:

• Rough stimulation of the genital area
• Using a vibrator for stimulation
• Orgasm
• Menstruation
• Infection or inflammation of the vagina or uterus

If you experience AD symptoms during sex, immediately stop the activity. Put yourself into a sitting position. Be sure you have also removed all tight clothing, binders and compression hoses. If this does not stop the AD symptoms, call your medical provider or 911. Generally, the AD symptoms will stop after the activity stops.

You may want to discuss AD with your health care provider prior to having sex to develop a plan in case it occurs. If you are prone to AD, it may be wise to have Nitroglycerin Ointment 2% available. Speak with your provider further to get more education on this medication.

Bladder and bowel:

• Be sure to empty your bladder before any sexual activity.
• A suprapubic catheter can be taped to the lower abdomen to keep it out of the way and prevent pulling.
• Stick to a regular bowel program. Do your bowel program before sexual activity so your bowels are empty.
• Use a pillow or wedge under your pelvis to tilt it upward. This will aid in penetration and keep pressure off the bladder and lower bowel.

Skin care:

• Damage to skin from shearing, pressure or rubbing can happen during sexual activity.
• Padding and positioning can help prevent pressure and friction injuries.
• Monitor skin for redness and injury.
• Remove pressure from the area if anything develops.
• Use plenty of lubrication.
• Be sure to wash and dry the genital area with soap and water before and after sexual activity.

Menstrual periods

Menstrual periods frequently stop for a time after an SCI due to the shock the body has received from the injury. Menstrual periods will usually start again within three to six months. Either tampons or menstrual pads can be used.

• Tampons: Many women prefer tampons because they do not cause skin irritation. They can also provide better protection from leaking during transfers. If you use tampons, change them often, at least three times a day. This will help lessen the risk of toxic shock syndrome. Toxic shock syndrome is a dangerous illness caused by not changing tampons often. If you are having trouble inserting a tampon due to limited hand function or vaginal dryness, try using a lubricated tampon or have a caregiver assist you.
• Menstrual pads: If you use pads, check regularly for signs of skin irritation and pressure marks between your legs. Keep your skin clean and dry to prevent skin breakdown. You will need to be careful with the hygiene products you use.
• Over-the-counter douche products are not recommended. They rinse away normal bacteria that protect your body/vagina from infection. If you have a vaginal infection, an over-the-counter douche can push the infection further into the vaginal canal, even into the cervix and uterus. This could result in a more serious infection.
• Vaginal hygiene sprays are also not recommended. The chemicals in them can irritate the skin and make infections or skin breakdown more likely.
• Vaginal discharge in small amounts is normal. Always report heavy, discolored or foul-smelling discharge to your health care provider.

Birth control and SCI

Women are able to get pregnant after a spinal cord injury, with pregnancy rates similar to the non-injured population. If you do not want to get pregnant, using birth control is a good idea. There are many different types of birth control available and it is recommended that you speak with your gynecologist to discuss the option that is right for you.

• Condoms: When used correctly, condoms can be up to 98% effective in preventing pregnancy. Condoms are the only form of birth control that can also protect against sexually transmitted diseases. These can be used safely for a person with SCI.
• Birth control pills: Birth control pills can be taken after SCI and many women use them. When taken correctly, birth control pills are generally between 91% and 99% effective in preventing pregnancy. However, it is important to know that birth control pills have been linked to a higher risk of developing blood clots in the non-SCI population. Individuals with new onset SCI have a high risk of developing blood clots. This risk decreases after 3 months of being injured. It is not often recommended that combination birth control is used within the first three months of injury, but after this time, it may be an option for you. Other things that make your risk for blood clots high are smoking, obesity and/or being older than age 35. In these cases, your health care provider may recommend a different birth control option.
• NuvaRing: The NuvaRing is a vaginal ring that is inserted into the vagina. It is changed once a month. The NuvaRing is between 91% and 99.7% effective in preventing pregnancy.
• IUDs: Intrauterine devices (IUDs) are implanted plastic or copper T-shaped devices that are inserted into the uterus. On average IUDs are over 99% effective in preventing pregnancy. Your periods can be affected by the type of IUD you use. IUDs have a higher risk of causing pelvic inflammatory disease than other birth control options. Being sexually active with multiple partners may increase this risk. Because you may not be able to detect pain as readily as before SCI, it may be harder for you to know if the device has become dislodged or if there is pelvic pain suggestive of infection. This does not mean this is not the birth control option for you. Discuss your situation with your health care provider to determine what makes the most sense for you.
• Implanted hormonal devices: Implanted hormonal delivery systems are over 99% effective in preventing pregnancy. These devices are small rods containing a form of the hormone progesterone. They are effective in preventing pregnancy for three years. The risk for blood clots is lower than that of birth control pills, but there is still a risk.
• Depo-Provera injection: Injected hormonal birth control option that is given every 12 weeks and is usually injected at your health care provider’s office. It is 99% effective in preventing pregnancy. This can increase your risk for blood clots but the risk is less than when taking some birth control pills. Regardless of age, women who use Depo-Provera can experience a loss of bone mineral density that can lead to osteoporosis (which is already prevalent in spinal cord injury).

Don’t forget…

All women should see a gynecologist for a yearly exam of the cervix, vagina, uterus, ovaries and breasts. This exam will monitor for changes, problems and cancer. When you call to schedule an appointment, ask if the office and examination table are wheelchair accessible. Also ask if staff members can assist with transfers, positioning and preparation for the exam. It is important to know that you can still get pregnant and you can still get sexually transmitted diseases such as herpes, syphilis and AIDS — so use protection!

If you are planning a pregnancy or are pregnant, look for a gynecologist (OB/GYN) who is willing to work with you. Help them understand the causes and treatment of AD so that any AD issues can be managed by this doctor during your pregnancy. (see Pregnancy After Spinal Cord Injury)

You already know that a spinal cord injury causes an impairment of the muscles involved in breathing – the higher the injury, the greater the impairment. That’s strike one. The fact that smoking is harmful to your lungs is hardly news. Still, that’s strike two. How smoking affects your lungs – just what happens when you smoke – and what this means when you have a spinal cord injury and an already compromised respiratory system is what’s important to know.

Do any of these stories apply to you?

Russell uses everything he learned in rehabilitation to take better care of his body. However, he still keeps on smoking. He feels that he has a right to hang on to that, since everything else is so hard…

When Doug’s friends offer him a cigarette, he accepts. He wants to “get back in the swing of things” since his injury…

Tobacco

Nicotine, the addictive ingredient in tobacco, is an extremely toxic drug that permanently damages vital body organs. It is just as addictive as heroin and cocaine.

Smoking tobacco:

• Makes breathing difficult
• Cuts your body’s supply of vitamin C, so skin wounds heal more slowly
• Makes it more likely you’ll get pressure sores
• Increases your chance of having a stomach ulcer

You’ve heard this all before…

You most likely have heard all the reasons to stop smoking – lung cancer, heart disease, emphysema, shorter life expectancy – yet, it’s a pleasure, a stress reliever or an old friend you are unwilling to give up following your spinal cord injury. Or, you simply may be willing to take your chances despite all the evidence of how harmful smoking is. Besides, quitting can be pretty difficult. For SCI survivors who smoke, however, there’s even more bad news and more ill health effects than those cited for the general population.

Specifically, there is an increased incidence of skin sores, a decreased ability to heal following skin surgeries, and a greater likelihood of atelectasis (collapsed lung). Additionally, smoking further reduces the total lung capacity already decreased by SCI and diminishes the amount of oxygen in the bloodstream used to nourish tissues and power muscles. Finally, smoking can further increase an already heightened risk for bladder cancer.

It’s not just breathing in, but also breathing out!

When we think of breathing, we usually think about getting air in. Often times with SCI, and especially with SCI and cigarette smoking, getting air out can be even more important. Why? Because a buildup of mucus and various secretions in the lungs – which are increased by smoking – can lead to problems. Normally, this buildup is coughed out. However, the muscles responsible for coughing are affected with cervical injuries, and to a varying degree with thoracic injuries as well. An impaired ability to cough can frequently lead to atelectasis, which is a collapse of the honeycomb-like air sacs that often causes secretions to become trapped in the lungs. The secretions build up and may lead to pneumonia, one of the more common causes of both sickness and death with SCI. Smoking increases the production of this mucus and contributes to congestion.

What’s more, smoking further impairs the ability to cough or expel these secretions. A study of 165 SCI survivors found that smokers tested significantly lower in both the amount of air they were able to cough out, as well as the force with which they were able to expel it. Survivors are already at risk of congestion and infection due to their injury; smoking raises the stakes, placing them at even higher risk.

SCI Risks

As people age, both breathing capacity and lung volume decrease. This is due to a loss of elasticity of the lungs and muscles of the chest wall. These changes decrease the ability to fight off infections.

With SCI comes other potential concerns, such as:

• Increased weight can make breathing more difficult
• General decrease in exercise can lead to decreased breathing capacity
• Posture problems: rounded shoulders or slouching can lead to smaller lung capacity
• A change in the type or severity of spasticity can affect the chest or breathing muscles
• Increased number and severity of respiratory infections due to diminished ability to cough

All these changes place SCI survivors at higher risk for respiratory problems as they age. Smoking not only multiplies the problems but also increases the risks.

My skin can be affected too?

Congestion and lung infection aren’t the only problems associated with smoking. Studies have also linked smoking to an increased incidence of pressure sores as well as longer healing time for both sores and the skin surgery which is sometimes necessary to repair them. Specifically, a study of 38 SCI survivors found smokers to have both a higher incidence and more extensive pressure sores than nonsmokers. After ruling out various other factors which might contribute to skin problems — diabetes, type of cushion, completeness of injury, spasticity, body weight, and the availability of help with skin care – the conclusion was that smoking contributed to the development of pressure sores more than any of the above mentioned factors. Why? Read on….

Poor circulation can lead to skin breakdown…

Healthy skin depends on the good circulation of highly oxygenated blood to carry nutrients to the skin and remove waste products from it. Smoking in general, and nicotine in particular, cause a decreased blood flow to the extremities. In addition, smoking produces carbon monoxide, which severely impairs oxygen from even entering the blood. In other words, not only does smoking cause less blood to get to the skin, but the blood that does get there has far less oxygen. A decrease of oxygenated blood and nutrients to the skin, as well as insufficient removal of waste products from it are good ways to develop pressure sores. Actually, that’s exactly what happens when you don’t do weight shifts, use a bad cushion or wear shoes that are too tight.

…and slower healing

Once skin sores develop, this same impaired circulation of less oxygenated blood slows down healing. In fact, this decreased concentration of oxygen in the blood is the greatest threat to wound healing. The relationship between smoking and poor healing has been noted by many surgeons, and several studies have shown the increased risk of skin flap necrosis – the death of skin tissue following surgery – due to smoking. It appears that smoking not only helps you get pressure sores, it also seems to help you keep them.

Skin changes with age

The risk of skin problems for the survivor increases with both age and number of years post injury. The skin becomes thinner, less elastic, and more susceptible to shearing and tearing, which increases the possibility of skin breakdown during transfers. Sitting and turning tolerances may also diminish. As circulation decreases, the body ages and the skin is less able to clear waste products. These factors result in the increased susceptibility to skin infections and slower healing of wounds. Just as with respiratory complications, smoking raises the risks and increases the odds of serious skin problems.

Parting thoughts

The links between smoking and various health problems seem to grow stronger every day. If all you’ve read so far isn’t enough, the risk of bladder cancer is also higher among those with SCI: about 3% compared to less than 1/10% for the general population. Indwelling catheters have been found to increase the risk of bladder cancer 3.8 times, compared to SCI survivors who do not use an indwelling catheter. And of course, the risk of that problem also goes up with smoking, as cancer-causing agents may be carried in the urine.

Living with a spinal cord injury is risky business. The chances of developing skin or respiratory problems are quite high – far greater than before injury. Combining SCI and smoking is like playing against a stacked deck – the chances of losing are very high.

What is Spasticity? 

Spasticity, or spasms, are spontaneous, involuntary, uncoordinated reflex movements of muscles, which can occur following spinal cord injury. While some spasticity may be useful, spasms can become a problem and interfere with wheelchair positioning, transfers, and sleeping. One you should first try oral medications or Botox injections. When spasticity becomes a problem and cannot be treated adequately with medical management, surgical intervention may be appropriate.

Surgical Intervention

These surgical options are only used when spasticity cannot be treated with medication. Sometimes, a spinal cord untethering or cyst shunt surgery is an appropriate option for spasticity when medication does no work. For more information about this option, see Posttraumatic Tethered Cord and Syringomyelia.

• Intrathecal Baclofen Pump: This is a surgical procedure involving the placement of a pump, which delivers spasticity medication through a catheter into the spinal fluid space around the spinal cord. This procedure is not destructive to the spinal cord and spasticity control can be adjusted by programming the dosing of spasticity medication delivered through the pump.
• Selective Sensory Microrootlet Section (SSMS): This is a surgical procedure which involves cutting selected sensory nerve rootlets entering the spinal cord. Bone is removed from the back of the spine, called laminectomies, which allows us to get the spinal cord. The covering around the spinal cord (dura) is opened and the selected sensory nerve rootles are identified and cut. This is a destructive procedure to the nerve rootlets coming off of the spinal cord and is not reversible. Patients who have preserved sensory function below the level of injury are not candidates for this surgery.
• Dorsal Root Entry Zone Microcoagulation: This is a surgical procedure which involves heating targeted regions of the spinal cord that are contributing to spasticity. This procedure also requires laminectomies and opening the dura to get to the spinal cord. This is a destructive procedure to the spinal cord and is not reversible. Patients who have preserved sensory or motor function below the level of injury are not candidates for this surgery.

What’s it all about?

Because spinal cord injury can be a life changing event, your whole way of life —including your spirituality — is challenged. You may find yourself questioning your life goals, work, responsibilities to your spouse or children, parents and friends. While there are five dimensions that comprise good health — social, physical, intellectual, emotional, and spiritual – spirituality is the one dimension that is usually overlooked. It is probably the least talked about and addressed in hospitals and other health care settings. It is also the dimension that may be the most controversial and misunderstood.

Just what do we mean by “spiritual?”

At birth, when you inhaled your first breath, you became a spiritual being. But, what does that mean? The spiritual interacts with the other dimensions of life. It operates much like the traffic reports we get during rush hour. It senses what is going on within us. We can choose to ignore the “reports” or we can listen to them. More than that, just as a light needs electricity to work, so does the human body need the spirit to function. Some people use the words “spiritual” and “religious” interchangeably, but spirituality is really a broad term; religious ideas and concerns are only a part of a much larger concept. So, while some people’s spirituality is very much related to God or a higher power and might include worship in a church, synagogue, or mosque, for others spirituality may have nothing to do with religion and things like praying or going to church. Some examples of spiritual activities are meditation, traveling, reading, learning or doing something new, focusing on nature, and becoming deeply moved by music.

Believe it or not, there is evidence…

It is through our efforts to understand life’s contradictions, problems, or paradoxes that our spiritual expressions and growth can occur. Spirituality, for some people, plays an important part in quality of life, coping, and the search for meaning in crises. Generally, researchers have also found that spiritual well- being and physical well-being are related. They have learned that such activities as attending religious meetings, meditating and praying, helping others through volunteer work, and being part of a support group or network are all related to health. In fact, some recent studies demonstrated that those who attended religious services on a regular basis had lower death rates than those who attended infrequently, or those who did not attend religious services at all. One researcher concluded that those who didn’t have “strengths or comforts from religion had almost three times the risk of dying within six months of surgery.” Spirituality has been shown to buffer against life’s stresses and to help stave off depression. Although this probably does not mean that non-churchgoers can greatly improve their health by starting to attend services, it does suggest that regular, long-term attendance at religious services can make a positive difference.

Meditation and Prayer

These two activities are closely related and are an integral part of spirituality: meditation and prayer. Meditation — which is not necessarily a religious activity — is an act of sitting quietly and alone in a quiet place with your eyes closed, paying attention to your breathing and repeating a word or phrase during the breathing cycle. It is a way of paying attention to your inner, or spiritual, self. Fifteen years ago, Dr. Herbert Benson, in The Relaxation Response, showed that relaxation techniques such as meditation have immense physical benefits – like lowered blood pressure and a reduction of heart disease. More recently, the National Institute of Health Technology Assessment panel found evidence that relaxation techniques reduce chronic pain in a variety of medical conditions as well. Prayer is reaching out to a higher power on behalf of yourself or others. It is something you might do regularly or in times of stress, pain, or joy. It can be an act of spiritual communication with another about your own or another’s pain or problems, or when you are thankful for something good in your own or another’s life. Given that 92% of Americans believe in God or some other ‘higher power’ (2010 Gallup Poll), it is not surprising that many patients think their physicians should address spiritual issues as part of medical care. Dr. Larry Dossey, in his book, Healing Words, describes research that shows that prayer has an impact on a range of bodily ailments and illnesses: heart disease, high blood pressure, stroke, cancer, and gastro- intestinal disease. While there is no conclusive proof of the power of prayer to actually heal, there is enough credible evidence to show that prayer has positive effects on the one who is prayed for as well as the one who prays.

What does this mean for you?

You may not consider yourself a spiritual person. You may not have attended religious services for a long time or even prayed for a long time. Perhaps, at the time of your accident and recovery you uttered a prayer or two –what some people call “Foxhole Religion.” That’s fairly normal. Indeed, in times of war or other national, regional, or personal crises, churches fill with people trying to find help and meaning in the midst of the terrible chaos that has invaded their lives. So, what would be the advantages of thinking about or working on that spiritual dimension of your life? The advantages may be stress reduction, fewer aches and pains, a higher level of quality of life, and a better ability to cope with disability. These are not guaranteed, but many people have found positive results by focusing on the spiritual.

What can you do?

The following activities might help you to begin or continue your journey into spirituality.

• Try meditation. Pick up Benson’s book The Relaxation Response or his newest, Beyond the Relaxation Response: How to Harness the Healing Power of Your Personal Beliefs. Try your local library or an internet site like Amazon.com.
• Find a church, synagogue, or mosque that is accessible and see if it meets your spiritual needs. Places of worship provide strong social support to people with a variety of physical, emotional and spiritual needs.
• Volunteer for a religious organization or for other non-profit organizations. Helping others is also a protective factor.
• Read books on spirituality, meditation, or find audio tapes on related subjects. If you have a computer and internet access, look for sites that deal with spiritual concerns.
• Develop some spiritual disciplines. This might include prayer, Bible reading, study, or meditation.
• Take a course in meditation or spirituality at a local college, “Free” University, library, or religious organization.
• Find a support group or a network of people who have similar concerns or problems.
• Pray. Focus on your relationship with God, your family and friends, and your needs and concerns.
• Tell your doctor about your physical and spiritual needs. You could be surprised about his or her openness to spiritual needs.

You may find that one or more of these activities will get you in touch with your spiritual dimension and help you in your work at keeping well. Remember: research is already finding considerable evidence that spiritual practices help promote better health-related behavior and lifestyles; they lower your risk for illnesses and strengthen your well-being. They also provide social support which lessens stress and reinforces your ability to cope with stress.

Other resources:

Healing Words: The Power of Prayer and the Practice of Medicine, by Larry Dossey, MD. Harper and Collins Publishers, 1993. Recovering the Soul: A Scientific and Spiritual Search, by Larry Dossey, MD. Bantam Books, 1989. Head First: the Biology of Hope and the Healing Power of the Human Spirit, by Norman Cousins.Penguin Books, 1990. Anatomy of an Illness (revised edition), by Norman Cousins. Bantam Books, 1991. Celebration of Discipline: The Path to Spiritual Growth, by Richard Foster. Harper Publishers, 1988.

After experiencing a spinal cord injury or brain injury, sun safety can become even more essential with changes in skin integrity, heat sensation and physiological responses.

USE SUNSCREEN.

Use an SPF that’s appropriate for the time you’re going to spend outside, if you’ll be in the water or perspiring, and the altitude at which you’ll be doing your activity.

KEEP YOURSELF COOL.

How the body regulates temperature can change after a BI or SCI. Bring a thermometer with you if you’re in the heat for an extended period of time. Wet towels and spray bottles can also help keep you cool, and staying hydrated is critical.

WEAR PROTECTIVE CLOTHING.

Cover vulnerable areas like the top of the head, back of the neck, arms, knees and shoulders. Consider clothing and accessories that are UV protective, can wick away moisture to protect skin integrity and help regulate your temperature in the heat.

WATCH YOUR SKIN.

Inspect your skin to screen for burns or skin breakdown, and keep a watchful eye on the features of your skin, like moles and freckles. Follow up with your PCP if you notice changes in your skin’s normal features.

KEEP YOUR GEAR COOL.

Keep to the shade as much as possible in the heat of the day, and if you leave your wheelchair on shore or at poolside while you’re enjoying water activities, don’t forget to cover it with a towel or blanket to prevent burns or overheating when you return to it.

This educational video is designed to provide a basic understanding of what a suprapubic catheter is and how to take care of it.

For 20 years, Tom had “no aches, no pains, and no nothing.” Why was his luck changing now? Maybe his shoulder pain started because his new van didn’t have power steering, or maybe it was because he was doing a lot more wheeling on carpet. Regardless, now his shoulders hurt. Thinking that the pain might go away, he waited. But, after three or four months, the pain was so bad he couldn’t stand it anymore. A trip to the doctor left Tom with more information and some difficult choices.

Aging, Wear, Tear, & Overuse

Tom’s story isn’t really unusual; we all expect a few more aches and pains as we grow older. After all, aging and wear and tear go together. What’s different about Tom is that staying active after his spinal cord injury meant even more wear and tear on his arms and shoulders. Studies have shown that arm and shoulder pain is more frequent among SCI survivors than in the nondisabled population.

How Injuries Happen

Pain and injury from daily overuse is a frequent cause of upper extremity pain. Overuse, however, is different for each person. An activity that causes pain for one person may not for someone else. In general though, the more frequently an activity is performed, and the more lifting or straining the activity requires, the greater the opportunity for injury and pain.

Think about the number of times you transfer from your wheelchair everyday and then consider the extra shoulder strain when you transfer to and from surfaces above or below your wheelchair — maybe into a bathtub, or a tall pickup truck. The same transfers, day in and day out can cause a lot of strain on your shoulders and wrists.

Overuse injuries can affect nearly any joint in the upper extremities, but most often affect the shoulders and wrists. Pain may be constant or may appear only during certain activities like wheeling long distances. Sometimes pain begins when daily overuse is combined with a specific injury like lifting something too heavy or too quickly. That “something” could be a grocery bag, a wheelchair, or your own body during a transfer.

Rotator Cuff Tears, Biceps Tendonitis & Carpal Tunnel Syndrome

Three frequent injuries among persons with spinal cord injuries are rotator cuff tears, biceps tendonitis, and carpal tunnel syndrome.

The rotator cuff is made up of four muscles and their tendons. These muscles support the shoulder and contribute to nearly all of its movements. Many factors, including both activity level and aging, can combine to increase pressure on these tendons and decrease their circulation. Eventually, a tear may occur — either partial or complete, depending on the amount of damage to the tendons and soft tissue. The most common symptom is pain or weakness when reaching above your head.

Biceps tendonitis is an inflammation of the biceps tendon and is often found in people who also have a rotator cuff tear. During normal arm movement the tendon of the biceps glides in a groove in the bone of your upper arm. Repetitive movements can cause swelling and pain in and around the tendon. Repeated use may even cause the tendon to fray. You usually feel pain near the middle of your shoulder in the front, or slightly lower on the outside of your arm. You might also have pain when you try to reach behind your back. Without treatment, you could lose some of your active shoulder movement.

Carpal tunnel syndrome occurs when a particular nerve is pinched as it passes through a narrow tunnel in your wrist. The usual symptom is pain or tingling in your thumb and first two fingers. It might awaken you from a sound sleep but then go away if you shake your hand. Bending your wrists tends to narrow the tunnel and increase the symptoms even more. And, as research already has shown, repetitive stress and strain on your bent wrist does greatly increase the risk of developing carpal tunnel syndrome. Unfortunately, SCI survivors do many daily activities with a bent wrist — transfers, weight shifts, wheeling, and using crutches are just a few examples.

Getting Help

Upper extremity pain can begin with many different injuries; often the symptoms of one are very similar to those of another. As you evaluate the type of pain that you’re having, ask yourself: what kind of pain is it — a sharp pain with certain movements, or a dull nagging pain? Where is it — all over or maybe one specific spot on your shoulder or your wrist? When does it hurt — all of the time or just certain times? How did it start — did it come on quickly or has it seemed to develop slowly?

Many people endure lots of pain before they seek treatment. But, ignoring pain probably won’t make it go away, so don’t put off talking with your doctor. In fact, ignoring pain frequently limits recovery and function. An accurate diagnosis, and the facts about different treatments will help you make wise choices.

Be prepared to tell your doctor exactly what activities you do with your arms. Don’t just tell him or her that you use your arms for transfers. Be ready to explain, or even demonstrate, how high, how far, and how often. Not only may your daily activities be causing your pain, but some of your doctor’s recommendations will involve altering those same activities.

Treatment Choices

For most diagnoses, there probably will be more than one treatment option. What you choose will depend on what’s causing your pain, and how that treatment will affect your daily activities and independence.

Most treatments begin conservatively. “Conservative” can mean changing or decreasing your current activities, buying new equipment, increasing the assistance you get from others, or resting your joints. You may need to use some imagination. What other ways can you get the same activities done? Can some of them be done by a family member? Can you hire an attendant or housekeeper for heavy work to give your shoulders a rest? How about equipment? Less expensive options may help too, like transfer boards, grab bars, a tub bench, or nocturnal splint. An occupational or physical therapist can help you evaluate these options and choose what you need.

Your doctor may recommend medication to decrease your pain or to reduce joint swelling. Medications can be effective, especially when combined with joint rest and the elimination of the pain-causing activities. Keep in mind, though: many pain medications cause constipation and can affect your bowel program. Ask about other side effects as well. And, make sure that your doctor knows all of the other medications you’re taking.

For some people, surgery is the best, or only, option. But surgery — at least in the short term — can significantly decrease your independence. While you recover and the repaired area heals, you may need to rent a power wheelchair and arrange to have extra assistance. Make sure that you discuss the recovery period, in detail, with your doctor before surgery so that you make all the necessary arrangements.

Some Final Thoughts

Does the possibility of shoulder pain or injury later on mean that you should do as little as possible with your arms right now, that you should be protecting your arms at all costs? No, it’s not that simple. A balance of exercise and movement is important to keep your joints healthy. But, the key word is balance. The choices you make today will impact the quality of your life as you get older. The bottom line is to pay attention and choose well.

What is a urinary tract infection?

A urinary tract infection occurs when there are bacteria in your bladder or kidneys that may disrupt your daily life.

What causes urinary tract infections?

Urinary tract infections (UTI) are caused by bacteria getting into your bladder and growing out of control. People who use catheters to help them urinate are at high risk for getting UTIs. The catheter provides a direct path for bacteria to enter your bladder. Often, bacteria live in your bladder without any problems; this is called colonization. Sometimes, the bacteria increases and they may cause a urinary tract infection.

What are the signs and symptoms of a urinary tract infection?

• Increased spasms
• Autonomic dysreflexia
• Mild low back pain or other aches
• Feeling tired
• Fever or Chills
• Urinary leakage or having to catheterize more often
• Nausea
• Headache
• Blood or sediment in the urine
• Cloudy urine or a foul odor to the urine
  • Cloudy, foul-smelling urine may be due to changes in diet and fluid intake. With no other symptoms, this is not a reason to take antibiotics for a UTI.

How do I prevent a urinary tract infection?

The best way to prevent a UTI is to drink lots of fluids. You should drink at least 64 oz of fluids a day, especially water. It is best to avoid beverages with sugar, caffeine and alcohol. These drinks may increase bladder irritation and contribute to UTIs.

Some people believe that cranberry pills can help reduce UTIs by changing the chemistry of the urine and stopping bacteria from clinging to the bladder wall. Clinical research on the effectiveness of cranberry is mixed – some studies support the use of cranberry and some studies do not. However, many people report a deceased frequency of UTIs when using cranberry pills.

If you decide to take cranberry to help reduce the number of UTIs, we recommend taking the cranberry pill and not cranberry juice. Cranberry juice contains a lot of sugar and calories. Blended juices (cran- grape, cran-apple, etc.) do not offer enough cranberry ingredients to have any benefit. Talk with your doctor about any medications or herbal supplements before taking them.

Sometimes your doctor will recommend vitamin C, which can make your bladder more acidic which can help prevent or treat your UTI. Talk with your doctor about any medications or herbal supplements before taking them.

If you have an indwelling catheter, in general, it should be changed on a monthly basis. It may need to be changed more often if you get frequent UTIs or produce a lot of sediment or crystals in your urine. Talk with your doctor about the schedule that is right for you.

Keeping the catheter and insertion site clean is also very important. If you have an indwelling catheter, clean the catheter and the insertion site in the morning and at night with soap and water. If you use intermittent catheterization, wash your hands and insertion site before touching the catheter and do not let the catheter touch anything before or during insertion. For instructions on proper technique, talk with your doctor or nurse.

I think I have a UTI, when should I call my healthcare provider?

Since it is common to have bacteria colonized in your bladder when you use a catheter, antibiotics are not recommended unless you have a fever (temperature greater than 100 degrees Fahrenheit) or if your signs and symptoms are limiting your ability to participate in normal activities.

If I have a UTI, what will my healthcare provider do?

Your provider will ask about signs and symptoms and whether you have any drug allergies. They will collect a urine sample before ordering any antibiotics. This sample will help determine which antibiotic to prescribe. Because antibiotic resistance is a growing problem, antibiotics should be avoided unless you have significant symptoms of a UTI or a significant level of bacteria in the urine. If you take antibiotics it is very important you take the entire amount prescribed even if you start to feel better.

What do I need to know about antibiotic treatment? 

• To make sure the bacteria is destroyed it is important to take all of the medication you are prescribed.
• Do not take any antibiotics prior to giving a urine culture, as this will make the results incorrect and harder to treat your infection.
• You should always change your catheter midway through an antibiotic treatment. The new catheter prevents re-colonization of bacteria from the old catheter.
• When you have completed your antibiotics, it is not necessary to get a repeat culture unless your signs and symptoms have not improved.

How do I collect a urine sample from a catheter?

• The best method of collecting a urine sample is to change your catheter and collect urine immediately from the new, sterile catheter.
• If it is not possible to change your catheter, urine can be taken directly from the indwelling catheter.
• You should never collect a urine sample from your leg bag or night bag.
• Urine for a urinalysis and a culture should be kept cool or refrigerated and be delivered within 2 hours of collection to your doctor or lab.

What is VRE?

VRE stands for vancomycin-resistant enterococcus. Vancomycin is an antibiotic used to treat infections. Enterococcus is a germ normally found in the lower intestinal tract and the female vagina. Sometimes this germ becomes strong enough to resist vancomycin. This is called VRE, for short.

Who gets VRE?

Those at greatest risk for VRE infections are:

• People in the hospital with severe conditions (ex, cancer or severe injuries)
• People who stay in the hospital for a long period of time
• People who have many medical procedures (IVs, catheters, surgeries)
• The elderly, especially those in long-term care facilities
• People with frequent exposure to vancomycin and other antibiotics
• People may be “colonized” with the germ, which means that they have the germ but it is not causing an infection. Other people may be “infected” which means they have the germ which causes an infection making them sick.

Where is it?

VRE is most often found in feces or stool but it can also be present in urine, blood, skin wounds or other body fluids. It can also be found on the skin, especially in the warm and moist areas of the groin and under the arms.

How is it treated?

If a VRE infection results in sickness, it can sometimes be treated with other antibiotics.

If VRE has colonized a part of the body but doesn’t cause sickness, treatment is usually not necessary. Some people’s immune systems will be able to fight VRE on their own. The body’s natural defenses can sometimes get rid of VRE within several months. If the infection ever causes sickness – you must contact your healthcare provider for treatment.

How does VRE occur? Can it spread?

VRE is sometimes brought into the hospital from a VRE colonized person. Since they are not sick, they don’t know they are spreading the infection!

In the hospital setting, VRE can be spread between patients, most likely by hands and/or touching contaminated equipment.

Also, since enterococci are normally found in the bowels and vagina, a person may develop VRE after taking an antibiotic for an unrelated infection.

VRE is a hardy germ!

VRE can survive on hard surfaces for days and on hands for hours. 
It is easy to eliminate, however, with
proper use of disinfectant and good hand washing. 

How can I prevent it?

This germ does not travel through the air. MASKS ARE NOT NEEDED.

Washing hands is the best protection! Everyone must sanitize or wash their hands thoroughly before entering or leaving any patient room regardless of VRE presence. Ask your healthcare providers to wash their hands before they perform your care – don’t worry about offending them – they know it is the right thing to do.

Gloves must be worn by everyone who has contact with the patient, the patient’s room, and bed environment (which could be soiled with body secretions). Throw them away prior to leaving the room.

Gowns must be worn by everyone whose body or clothes will have contact with the patient or their environment, including the bed and bed linens. This means family and visitors as well. Throw them away before leaving the room. Visitors who do not make body contact and will not be mixing with other patients simply need to wash their hands thoroughly before leaving the room.