Living with a spinal cord injury

A spinal cord injury (SCI) is one of the most devastating of all traumatic events. It results in a loss of some or all of an individual’s sensation and movement. It is common for individuals who are newly injured to have health problems. Plus, it takes time to build enough strength to be able to fully participate in daily activities. Individuals who are newly injured will likely experience grief. This is a period of mourning that is similar to that following the death of a loved one. The difference is that you are grieving the loss of your sense of touch along with your ability to walk or use your hands. You will likely experience many different thoughts and feelings after injury. Some may seem extreme and others mild. There is no step-by-step grieving process, but some thoughts and feelings are common after injury.

• Denial/Disbelief: Individuals may first react to your injury as if nothing happened. Individuals may refuse to accept that the loss of feeling and movement is permanent. Instead, individuals may view the injury as an illness similar to a cold or flu that will soon pass with time.
• Sadness:  Obviously, no one is happy to be injured, no matter what your level of injury. Extreme sadness is common after injury because you have experienced a great personal loss. Sadness is that down, or blue feeling that you have when something bad happens. However, do not confuse sadness with depression. Depression is a medical condition that requires professional treatment. Individuals may be depressed if experiencing symptoms such as extreme sadness, inactivity, difficulty in thinking and concentrating, a significant increase or decrease in your appetite and/or time spent sleeping, and feelings of dejection, hopelessness or worthlessness. Depression may even involve thoughts about suicide.
• Anger:  Some people react to their injury with strong feelings of displeasure. Individuals might lash out verbally or want to become physically violent towards others. Individuals may feel angry toward themselves especially if their actions resulted in the injury.
• Bargaining:  At some time following the injury, individuals may begin to admit that their injury is a serious condition. However, individuals may still want to hold onto the belief that the injury is not permanent. While individuals may act as though they accept the injury as “the way things are,” acceptance may come with the belief that they will be rewarded for prayers and hard work in therapy and eventually recover from the injury at some point in the foreseeable future.
• Acceptance:  Grieving usually ends as the individual comes to accept a realistic view of their current condition and once again find meaning in life. A sign of acceptance is when individuals begin to think about their future as an individual with SCI and set goals to pursue in life.

ADJUSTMENT TO SPINAL CORD INJURY

Adjustment is defined as adapting to a new condition. Everyone makes adjustments during their lifetime. Some of the conditions that individuals are forced to adjust to may be planned and individuals typically have time to think about how they will react to the situation. For example, individuals may have to make adjustments in work hours when starting a new job. Other events may be a surprise in which individuals are forced to adjust to an unplanned event.

Individuals who adjust well to unexpected events generally lead healthy, active, and happy lives after their trauma. Individuals who do not adapt well to unexpected events tend to be less healthy, less active, and unhappier after their injury. Most individuals experience two primary issues of adjustment to spinal cord injury. Immediately after being injured, it takes time to get use to life after injury. Some people grieve longer than others, so the adjustment period is different for everyone. It may take as much as a year for individuals to accept the realities of the injury.  Individuals will also experience a continued process of adjusting to the unique issues that occur in their everyday life as a person with SCI.

PROBLEMS ADJUSTING TO SCI

If an individual has been injured for a year or more and has not come to accept the injury and its consequences, it is a good idea to look into other areas to find out whether or not the problems adjusting to SCI can be addressed. You may find it hard to believe upon first thought, but what happens to you is not as important as what you are thinking when something happens to you. Your thinking directly influences how you feel and react to events that occur in your life. This concept is the basis for Rational Emotive Behavior Therapy (REBT). Many counselors and psychologists teach REBT as a way to help people with and without SCI gain a healthy view of their lives.

HEALTHY ADJUSTMENT TO SCI

No matter what the event, you know that it triggers self-talk. These ideas, thoughts, and/or beliefs lead to your feelings. Your behavior and the results of your behavior are guided by your feelings. One of the biggest keys to adjusting to spinal cord injury is personal motivation. Individuals who are newly injured are often motivated to attend therapy sessions out of a desire to gain strength and function. You probably have a strong belief that your paralysis is only temporary, and you will soon return to your old, “normal” self. This hope is a common reaction after an injury. Unfortunately, it is far more likely for individuals to recover function based on their level and completeness of injury. In fact, only a few people actually fully recover from their injury. This does not mean that all hope is lost for a full or partial recovery. Almost all individuals with SCI continue to hope that they will walk again one day. However, a cure for paralysis may or may not come in your lifetime. A healthy approach to this reality is to move forward with your life after injury with the continued hope that advances in medicine will one day lead to a cure. In other words, do not wait on a cure to proceed with your life!

People who adjust well to life after injury are usually motivated to meet personal goals. These goals are different for everyone and often change throughout life. For example, your goal today may be to get a job, and you may want to have children in the future. Research from the University of Alabama at Birmingham (UAB) shows that people with SCI who are goal-oriented are less likely to be depressed and more likely to obtain some acceptance of their disability than persons who are not goal-oriented. However, it is up to you to find purpose in your life and the motivation to achieve your goals. It may help to think about what you wanted out of your life before you were injured. For example, you may have once strived for good health, an enjoyable job, and a loving family. There is no reason that you cannot continue to strive for the same things now that you have a spinal cord injury.

FAMILY ADJUSTMENT

It is important for individuals with SCI to recognize that the injury also has a tremendous impact on the family. Although they may not have to adjust to losing the use of their hands or ability to walk, family may experience a loss of the way their life was before your injury. For example, they may have to adjust to the role of caregiver. They may need to work to help with family finances. All of the changes that they face can lead to added stress and anxiety.

Family members also grieve. They may ask questions to try and understand the full impact of the injury and to help ease their feelings of sadness and fear. As your family comes to accept the injury, they face issues of adjustment similar to those you may experience. Children are naturally curious and adjust to events by asking questions. They ask questions because they make few assumptions about how the injury impacts their life. Therefore, children adjust rather quickly to an injury if their questions are answered in a clear, honest manner.

PROBLEMS IN FAMILY ADJUSTMENT TO SCI

As an adult family member, you may have difficulty with adjustment if you have your own irrational beliefs about life after injury. For example, you may hold the false assumption that individuals with SCI cannot work. You may hold the unrealistic idea that “no one” with SCI can or “should” have children. You may hold the irrational belief that you “must” do everything for your loved one who is injured.

Your actions as a family member are reflected in what you say and do around your loved one. If your actions are based on irrational beliefs, you may be unknowingly acting with less than supportive behavior. For example, if you continue to do things for your loved one that he/ she can do, your actions may be encouraging your loved one to be overly dependent on others.You may also be reinforcing your loved one’s false assumptions that individuals with SCI should be pitied or felt sorry for because life has treated them unfairly.

You may be enabling your loved one to engage in self-destructive behavior if you ignore or deny the possibility of a problem with substance abuse. Plus, it is also likely that your irrational beliefs will influence your own feelings, which may then lead to unhealthy behavior and unhealthy results. If you experience prolonged feelings of stress and anxiety, you may be putting yourself at risk for serious health problems such as disease or stroke if you do not adjust your views of life after injury

HEALTHY FAMILY ADJUSTMENT TO SCI

If you are a family member, healthy family adjustment is, essentially, taking care of you. For example, you can take time away from your loved one to do those things that you enjoy. You can help minimize your stress and anxiety by working to replace your own false assumptions, unrealistic ideas, and irrational beliefs. You can start by learning the facts about SCI. Then, challenge your irrational beliefs with evidence to dispute your beliefs. Finally, replace your false information with facts. Hopefully, you will soon discover that you too are living a healthier, happier, and more satisfying life.

No matter if you have a spinal cord injury or not, you have control over what you feel by choosing how you want to think about your situation. You can be happy and more hopeful about your life, but it will only happen when you work to make it happen. Your thoughts, feelings, and behavior do not change overnight. It takes time to grieve your loss and come to accept the realities of the injury. Then, you face a continued process of adjusting to everyday issues of living with SCI. If you avoid false assumptions, unrealistic ideas, and irrational beliefs, you will give yourself more opportunities to reach your goals and have the life that you desire.

THE PROBLEM OF PAIN AFTER SCI

Pain is a serious problem for many individuals with spinal cord injuries (SCI). Pain after SCI can occur in parts of the body where there is normal sensation (feeling) as well as areas that have little or no feeling. The pain is very real and can have a negative impact on quality of life. An individual in severe pain may have difficulty carrying out daily activities or participating in enjoyable pastimes.

The majority of individuals with SCI report that they have chronic pain. Chronic pain is pain that does not go away and instead lasts months to years. The cause of the pain may be unknown but is most often related to nerve damage from the SCI or musculoskeletal problems that arise in dealing with an SCI. The pain can come and go. Chronic pain is difficult to completely eliminate but often can be managed or reduced enough so that it doesn’t control the individual’s life.

Chronic pain can cause or worsen psychological problems such as depression, anxiety and stress. This does not mean the pain is “all in your head,” but rather that pain and distress can make each other worse.

Even though pain after SCI can be complicated and difficult to treat, there are many treatments available that can help. Understanding the pain, working with the doctor and being open to a variety of treatments will help to manage the pain and improve quality of life. Many people with difficult chronic pain problems after SCI have found relief using techniques described here.

TYPES OF PAIN

A person with SCI can have many different types of pain in different locations, including areas where there is not usually any feeling. Understanding what type of pain you have is key to choosing and implementing the right treatment. Therefore, your doctor will ask you to describe your pain in a variety of ways, including its locations, severity, how long you have had it, what makes it worse or better and so on. The doctor also may request that the individual undergo tests such as an x-ray or MRI (magnetic resonance imaging).

NEUROPATHIC PAIN

Neuropathic pain (“neurogenic pain”) is caused by abnormal communication between the nerves that were damaged by your spinal cord injury and the brain, where nerve signals that inform your brain how your body feels are interpreted. In neuropathic pain, it is thought that the brain “misunderstands” the signals it is getting from around the area of your injury and causes you to experience pain coming from below where you have little or no feeling. This is why a person can feel neuropathic pain in an area that otherwise has no feeling.

People often use words such as burning, stabbing or tingling to describe neuropathic pain, but neuropathic pain varies a great deal from person to person. It is often very difficult to treat, and frequently a combination of treatments must be used.

• Note: If pain starts years after injury, it may be due to a new medical problem, such as a syrinx, a fluid-filled cavity that forms in the spinal cord. It is rare but may require surgery. Therefore, it is very important to contact a doctor if you notice any new loss of sensation, especially in areas around the level of your injury, and any muscle weakness that doesn’t improve with rest.

MUSCULOSKELETAL PAIN

Musculoskeletal pain is caused by problems in the muscles, joints or bones. It is a common problem for all people as they get older, including those with SCI. Musculoskeletal pain can be caused by injury, overuse or strain, arthritic changes, or wear and tear of the joints, often from wheelchair use (including inadequate support for sitting) and/or transfers. This type of pain typically worsens with movement and improves with rest.

UPPER LIMB PAIN

Upper limb (shoulder, elbow and hand) pain is often caused by overuse of the muscles from doing transfers and pressure relief maneuvers and from pushing a wheelchair. It can occur months or many years after injury. Individuals with higher level injuries who use computers or joysticks for many activities (reading, communicating, environmental controls) may develop pain in the hand, arm or shoulder from overuse. Upper limb pain can make it difficult to transfer safely and perform other activities of daily living.

BACK AND NECK PAIN

Back and neck pain are common problems. In people with paraplegia who have had surgery to fuse their spine, increased motion that occurs just above and just below the fusion can lead to back pain. People with tetraplegia (quadriplegia) may also have back pain, especially if they are able to walk but still have weakness. People who use chin- or mouth-operated joysticks may sometimes develop neck pain.

MUSCLE SPASM PAIN

Muscle spasm pain happens when muscles and joints are strained from spasticity.

VISCERAL PAIN

Visceral pain is located in the abdomen (stomach and digestive area) and is often described as cramping and/or dull and aching. This type of pain can be caused by a medical problem such as constipation, a kidney stone, ulcer, gall stone or appendicitis. Since an individual with SCI may not have the usual symptoms associated with these medical conditions, it is important to consult with a doctor who has had experience caring for SCI patients in order to get a correct diagnosis and treatment.

Pain that comes from a visceral problem is sometimes felt in an area away from the source of the problem. This is called referred pain. One common example is shoulder pain that results from gallbladder disease.

Since pain can have so many different causes there is no single way to treat it. A trial of a combination of drugs, therapy and other treatments, including psychological treatments may be necessary.

PHYSICAL TREATMENTS AND INTERVENTIONS INCLUDING ACTIVITY MODIFICATION

Changes in mobility equipment (wheelchair, sliding board), wheelchair pushing and transfer techniques, and in the way the individual performs pressure reliefs can significantly decrease pain in the muscles and joints. Exercises that strengthen and balance joints can also help reduce musculoskeletal pain.

Physical therapy is used to treat musculoskeletal pain. Stretching and range of motion exercises may help relieve pain associated with muscle tension. Exercises that strengthen weak muscles can restore balance in painful joints and reduce pain.

Therapeutic massage may help relieve musculoskeletal pain due to muscle tightness and muscle imbalance.

Acupuncture is used to treat musculoskeletal pain. Tiny needles are inserted into the skin at specific points on the body. This method is thought to work by stimulating the body’s pain control system or by blocking the flow of pain.

Transcutaneous electrical nerve stimulation (TENS) is sometimes used to treat musculoskeletal pain. Electrodes are placed on the surface of your skin and send low levels of electrical current into your body. The current blocks signals from the areas of nerve damage that are triggering a pain response.

PSYCHOLOGICAL TREATMENTS FOR MANAGING PAIN AFTER SCI

Individuals can learn to use psychological techniques to help them manage their pain better to ensure that the pain doesn’t take over their lives. Psychologists trained in pain management can help with a variety of techniques proven to be effective in reducing the intensity and impact of pain.

• Relaxation techniques and/or biofeedback designed to teach you how to reduce muscle pain tension and “mental tension” associated with pain can be helpful in self-management.
• Self-hypnosis training has proven helpful for reducing chronic pain in some individuals.
• Cognitive restructuring. Learning how to think differently about your pain and its effects can actually lead to changes in brain activity and, in turn, the experience of pain.
• Individual psychotherapy designed to help identify desired goals and increase pleasure and meaning in daily life can help reduce pain. Therapy can also help if there is a significant amount of anxiety associated with pain.

MEDICATIONS

There are many different medications to treat pain. All of the medications listed below have shown some success in reducing pain, but none do so completely in every instance. All have possible side effects, some of which can be serious. Discuss all side effects with your doctor. Sometimes combinations of drugs work better than a single drug.

• Non-steroidal anti-inflammatory drugs (also known as NSAIDS) such as aspirin, ibuprofen (Motrin, Advil) and naproxen (Aleve) are most commonly used to treat musculoskeletal pain. Side effects may include stomach upset or bleeding problems.
• Anti-seizure medications such as gabapentin (Neurontin) and Pregabalin (Lyrica) are used to treat neuropathic pain. Side effects include dizziness, sleepiness and swelling.
• Antidepressants are used to treat neuropathic pain and depression. These medications include selective serotonin norepinephrine reuptake inhibitors (SSNRIs), such as venlafaxine (Effexor), and tricyclics, such as amitripltyline (Elavil). Side effects include dry mouth, sleepiness, dizziness and (with SSNRIs) nausea.
• Narcotics (opiates) such as morphine, codeine, hydrocodone and oxycodone are used to treat neuropathic and musculoskeletal pain. These drugs have many side effects, including constipation and sleepiness, and can be habit forming. It is possible to develop dependency on these drugs and some individuals may have withdrawal symptoms after suddenly stopping their dosage. However, these drugs can be used effectively for many individuals, and while not the first consideration for chronic pain management, should not be dismissed because of fears about dependency or side effects.
• Muscle relaxants and anti-spasticity medications such as diazepam (Valium), baclofen (Lioresal) and tizanidine (Zanaflex) are used to treat spasm-related and musculoskeletal pain. These may be taken by mouth or delivered directly to the spinal cord through an implanted pump (see “Intrathecal pumps” below). These drugs can cause sleepiness, confusion and other side effects.
• Topical local anesthetics such as lidocaine (Lidoderm) are used to treat pain that occurs when skin is lightly touched (called allodynia).
• Dorsal column stimulator is used to treat neuropathic pain due to nerve root damage. A high frequency, low intensity nerve stimulator is surgically placed in the spinal canal next to the spinal cord or nerve roots.
• Intrathecal pumps are used to treat neuropathic pain (using morphine) or muscle spasm-related pain (using baclofen) A pump containing morphine or baclofen is surgically placed under the skin in the abdomen. It delivers the medication directly to the spinal cord and nerve roots.
• For more information on prospective surgical treatments and the advance in technology for surgical procedures designed to treat SCIs click here: http://www.beltlawfirm.com/2013/10/will-technology-enable-timely-spinal-surgery-to-occur-throughout-the-state/
• Get treatment for medical problems. Overall health can have a big impact on pain. Urinary tract infections, bowel problems, skin problems, sleep problems and spasticity can make pain worse or harder to treat. Staying as healthy as possible can help reduce pain.
• Try to get as much exercise as possible. Getting regular physical activity can reduce pain as well as improve mood and overall health. It can also be enjoyable and distract you from pain. Your health provider can help you choose physical activities that are safe and appropriate for you.
• Get treatment for depression. Depression can make pain worse. It is best treated through counseling and medication. Getting treatment for depression can help individuals cope with chronic pain and improve the quality of life.
• Reduce stress. Stress can make pain worse or make the pain harder to cope with. Individuals can learn to effectively manage stress through counseling and learning techniques to help you reduce stress and tension, such as relaxation training, biofeedback and hypnosis. Exercise also helps reduce stress.
• Distract yourself. Distraction is one of the best methods for coping with chronic pain. Participating in enjoyable and meaningful activities can help reduce pain and help individuals feel more in control of their lives, especially when pain is at its worst. When individuals are bored and inactive, they have a tendency to focus more on pain, and this can make the pain feel even more debilitating.
• Keep a record. All individuals’ pain is different. Keep a record of what improves the pain and what makes pain worse. Understanding things that affect the pain will help to find effective ways to reduce your pain.
• Get a wheelchair seating evaluation. Poor posture and improper seating can cause serious pain problems. Individuals with SCI should have their seating evaluated by a physical therapist who specializes in wheelchair seating. If an individual uses a manual wheelchair, try to get a high-strength, fully customizable chair made of the lightest material possible (aluminum or titanium). Learn the proper wheelchair propulsion (pushing) technique from a physical therapist.
• Do not use alcohol to ease pain. Using alcohol as a pain medication can lead to alcohol abuse and other serious problems. Some medications should not be mixed with alcohol. Ask your doctor about drinking alcohol, and always read the labels of your prescriptions.

FINDING HELP

If you have pain, it is important to get treatment for it. The ideal source of help would be a physician and psychologist familiar with SCI and pain management, working together. If you do not have easy access to such experts, the next best alternative is to seek help from a multidisciplinary pain clinic where physicians and psychologists are available. Work closely with a health care provider with whom you are comfortable and who understands your condition. Chronic pain is not hopeless. Try not to become discouraged if one treatment doesn’t work, and be open to trying a variety of different techniques. While complete relief from pain may not be possible, living better despite pain is a realistic goal.

Autonomic Dysreflexia

WHAT IS AUTONOMIC DYSREFLEXIA?

Autonomic dysreflexia (AD), also known as hyperreflexia, is a condition unique to people with spinal cord injury (SCI). The condition occurs because the pathway for nerve signals is damaged following injury. Although persons with T6 levels of injury and above are at the highest risk for AD, it does rarely occur in persons with lower levels of thoracic injuries. AD occurs as a response to some type of irritation below the level of injury. The body tries to send signals to the brain to identify and respond to the irritant, but signals are blocked by the SCI. Without communication between the brain and body, blood vessels begin to narrow and cause a rise in blood pressure. When sensors tell the brain that the blood pressure is getting too high, the brain then tries to lower the blood pressure by sending out three signals to:

• Signal 1 – slow the heart rate (A slow heart beat is called bradycardia.)
• Signal 2 – enlarge blood vessels above the level of injury to hold more blood. This causes the upper body to look flushed or red and blotchy.
• Signal 3 – stop squeezing the blood vessels in the legs and abdomen.
• However, signal 3 is blocked by the SCI, so the blood vessels keep squeezing. The blood pressure stays high. It may even keep rising. When the blood pressure gets too high, it can result in a stroke, seizure or death.

SIGNS AND SYMPTOMS OF AD

An individual may have one or more of the following signs or symptoms when experiencing an episode of autonomic dysreflexia. Symptoms may be very slight or even absent, despite a high or even very high blood pressure. Some of the more common symptoms are:

• Pounding Headache
• Blurred Vision
• Flushed Face
• Nasal Congestion
• Red Blotches on Upper Body
• Nausea
• Cool, Clammy Skin
• Chills Without Fever
• Apprehension or Anxiety
• Sweating Above the Level of Injury
• Goose Bumps Above the Level of Injury
• Slow Pulse

WHAT TRIGGERS AD?

• AD is usually caused by something that might ordinarily be painful, uncomfortable or physically irritating. The irritant can be anywhere below the injury level, but the source of AD is usually in a few common areas.
• Bladder issues are the most common causes of AD. It may be bladder overfilling due to a blockage in the urinary drainage device, inadequate bladder emptying, bladder spasms, or possibly stones in the bladder. A urinary tract infection (UTI) can also cause AD.
• Bowel issues are the second most common cause of AD. It can be an overfull bowel, constipation, or bowel blockage (impaction). Any stimulus to the rectum, such as digital stimulation, can trigger a reaction, leading to AD. Certain abdominal tests, such as a barium enema or sigmoidoscopy, can also cause AD.
• Skin conditions such as irritations, wounds, pressure ulcers, and burns (sunburn) are possible causes. Insect bites and ingrown toenails can be triggers. Other possible causes include hard or sharp items that injure the skin, as well as tight, restrictive or wrinkled clothes. Additional triggers can vary greatly.
• Sexual activity and overstimulation can trigger AD.
• Severe abdominal conditions like gastric ulcers and appendicitis are possible triggers.
• Broken bones or even extreme changes in temperature can trigger AD.
• For women, menstrual cramps, pregnancy, labor, and delivery are potential causes.

AD TREATMENT

If an individual suffers from an episode of AD, find and eliminate the cause. The first and most important step is to get into and stay in a seated position. If lying down is unavoidable, keep the head raised as high as possible. Second, check for causes of the AD, and correct any problem issue. Individuals will notice a rapid drop in blood pressure and relief in signs and symptoms when the cause is corrected. Bladder issues are the most common causes of AD, so check these potential problems first.

• Is your drainage bag full?
• Is there a kink in the tubing?
• Is the drainage bag raised higher than your bladder?
• Is the catheter clogged or plugged?

After correcting any obvious problems, individuals should change their catheter if it is not draining within 2-3 minutes. If self-catheterizing, empty the bladder and check bowel issues next. Perform a digital stimulation and empty the bowel. Stop the procedure if signs or symptoms first appear while doing digital stimulation and resume after the symptoms subside.

Finally, check other areas of concern. Loosen any tight, restrictive clothing as well as any abdominal bands or straps. Check wheelchair, bed and seat cushions for sharp objects that might be pressed into the skin causing an irritation. Be sure to look in pant pockets for keys or other objects that might be pressing on the skin.

There are certain gender specific causes of AD that need to be noted. Men need to see if there is any pressure on the testicles and/or penis, especially during sexual activity. Condom catheters need to be examined to be sure they are not too tight. Women may need to treat cramps due to contractions of the uterus before and during menstruation. Labor and delivery often will trigger AD so it is wise to be prepared in case of an episode.

AD AND MEDICATIONS

Medications are generally used to treat Autonomic Dysreflexia only if the cause cannot be found and removed or when an episode continues even after removal of the suspected cause. The medications used to treat high blood pressure (also known as Hypertension) fall into two categories of Antihypertensives. Immediate medications such as Nitroglycerine Paste and Nifedipine (Procardia) rapidly lower blood pressure by widening the blood vessels to make it easier for blood to flow through them and easier for the heart to pump.

Preventative medications are used in cases of recurring AD. For example, a person who has a kidney stone may continually have high blood pressure until the stone is removed or passed. Other medical procedures or events such as child delivery can cause AD, as noted earlier. In these and other cases, you doctor may use medications to prevent AD from occurring.

Men taking medications for erectile dysfunction (ED) may have side effects (flushing in the face, headaches, nasal congestion and/or changes in vision) that also resemble signs and symptoms of AD. A blood pressure check is the best way to tell if you are having an episode of AD or side effects of the ED medication. Higher than normal blood pressure is an indication that you are experiencing an episode of AD, which is cause for you to immediately stop all sexual activity.

PREVENTION

As with most secondary conditions in SCI, prevention is the key. Since we know what some of the triggers are for Autonomic Dysreflexia, it makes it easier to know what to do to prevent it.

Since an overfull bladder is the most common cause, it’s usually best to start there. If Foley/Suprapubic/Condom catheters are being used, be sure to keep the tube free of kinks and empty the collection bag frequently. Also, check inside of the tube frequently for any kind of grit or deposit that may indicate that you have an infection or a stone. This may be a sign that your Foley catheter needs to be changed or irrigated as well. If intermittent catheterization is used, be sure to do it frequently enough to keep the bladder from filling.

The best prevention when it involves bowels is to maintain a regular bowel program. Avoid constipation by eating plenty of fiber (fruits and vegetables) and drink enough water. If hemorrhoids are present, be sure to treat them.

Do pressure reliefs frequently to avoid pressure sores. Check skin carefully every day for sores or other skin problems. Avoid wearing tight or restrictive clothing. Check clothing for sharp or hard objects that can rub or cause pressure (for example, buttons on rear pants pockets).

Refrain from long exposure in the sun and use a sunscreen to prevent sunburns. In general, avoid extreme hot or cold temperatures

SILENT AUTONOMIC DYSREFLEXIA

A sign of AD is a rise of 20 to 40 in the baseline systolic blood pressure along with other symptoms discussed earlier. Current research shows that significant elevations in blood pressure can occur without signs and symptoms of AD (asymptomatic). This condition is known as “Silent” Autonomic Dysreflexia. To date, “Silent” AD has been studied during the time of urination, digital stimulation of the bowels, and ejaculation during sexuality in men with SCI. It appears that people at risk for AD are also at risk for “Silent” AD. However, it seems that people who have never reported having an episode of AD still experience “Silent” AD. “Silent” AD has shown to be common during some activities, and it may also prove to be common with other activities. Further research is now needed to determine whether or not “Silent” AD poses the same dangers as AD and preventive medications are needed. If you have concerns, talk with your doctor.

Individuals need a plan of action should they experience any signs or symptoms of AD. First, individuals should get in a seated position. Second, look for the cause and remove the irritation. If the cause is not found or symptoms continue, seek emergency treatment immediately. Anyone who has a spinal cord injury at or above the level of T-6 should:

Understand the signs, symptoms, causes and treatment of dysreflexia;

• Have equipment for taking blood pressure available and know how to use it;
• If a systolic pressure is greater than 150, it is crucial  to seek emergency treatment immediately because it can result in a stroke, seizure or death.
• Keep a few tablets of Nifedipine (Procardia) on hand for emergencies (take only as prescribed).
• Keep a “Medical Alert” card with you at all times, especially when away from home.
• Be sure that all of your doctors have information about Autonomic Dysreflexia.

SEXUALITY AND REPRODUCTIVE HEALTH

Sexuality and reproductive health for men with SCI

A spinal cord injury (SCI) affects a man’s sexuality both physically and psychologically. After injury, men may face changes in relationships, sexual activity, and their ability to biologically father children. Men can also experience emotional changes that can affect sexuality. All of these issues involve both the man with SCI and his partner. Therefore, it is very important to understand and confront these issues as a part of the overall adjustment to life after injury.

Many men with SCI are capable of having an erection. However, the erection may not be hard enough or last long enough for sexual activity. This condition is called Erectile Dysfunction (ED). There are various treatments and products available for treating ED but men with SCI may have special concerns or problems with their use. It is important to see a doctor or urologist for accurate information on the various treatments and products available.

Men with SCI also experience a change in their ability to biologically father a child. The major factor interfering with a man’s fertility is primarily due to an inability to ejaculate as a result of damage to the spinal cord. In fact, 90% of men with SCI are not able to ejaculate during intercourse; this is called anejaculation. Another problem men with SCI may experience is retrograde ejaculation. This occurs when semen does not leave the urethra but travels back up the tube and is deposited in the bladder.

Options are available to assist men with spinal cord injury improve their ability to father children. Men who are interested in fathering a child should get medical advice and treatment options from a fertility specialist experienced in issues of spinal cord injury. The fertility specialist needs to be aware of methods that can improve sperm quality in men with SCI, as well as complications that can occur, such as autonomic dysreflexia.

A romantic and intimate relationship with a partner can be developed or maintained after a spinal cord injury. It is important to keep the lines of communication open as well as an openness to explore and experiment with different ways to be intimate. Together, you can discover what it takes to maintain a sexually stimulating and fulfilling relationship.

Sexuality and Reproductive Health for Women with SCI

Women with a spinal cord injury represent about 20% of all individuals with SCI/D and the majority of these women are of childbearing age. Regardless of a woman’s level of injury or dysfunction, women with SCI can engage in sexual activity, can have children and will need to use a contraceptive method if they choose not to have children. Education is the key for women with SCI/D to understand the facts related to pregnancy, labor, and delivery. The first step in the journey towards motherhood is visiting with an obstetrician. If your obstetrician has limited experience in managing pregnancies of women with SCI/D, it is recommended that you take a “team” approach to your pregnancy. You and your obstetrician can consult with an experienced physiatrist, nurse, urologist, anesthesiologist, neurologist, respiratory therapist, physical therapist, and occupational therapist on specific concerns about pregnancy, labor and delivery. Although women with SCI/D may be considered to have “high risk” pregnancies, it does not mean that pregnancy should be avoided. It simply means that you need to take precautions to prevent and treat complications. Pregnant women with SCI/D are at greater risk for developing:

• Autonomic Dysreflexia (AD)
• Changes in bowel function (constipation or diarrhea)
• Bladder spasms resulting from increased weight on the bladder
• Urinary tract infections (a UTI might actually trigger premature labor if not properly managed)
• Pressure sores resulting from weight gain and/or posture changes
• Respiratory complications
• Muscle Spasms
• Swelling of the legs and feet caused by lack of blood flow in the lower extremities

Many prescribed and over-the-counter medications normally used by women with SCI/D can cause problems during pregnancy. Some medications can also have an adverse effect on fetal growth. Therefore, it is essential that all medications be evaluated by your obstetrician before pregnancy and continually re-evaluated each trimester. Some conditions that you might manage with medications include bowel management, pain, sexual dysfunction, muscle spasms, and urinary tract infection (UTI). Some women with SCI/D may have signs of labor, while others may not. Therefore, those with SCI/D must be aware of the common signs of labor, including abdominal tightening, changes in breathing, backache. Autonomic Dysreflexia is common during labor and can be life threatening if not managed properly.

Most women can, and should, deliver vaginally whenever possible. Some may deliver with ease, while others may need the assistance of a vacuum device or forceps. Some women with SCI/D have skeletal abnormalities such as curvature of the spine, pelvic fracture, or hip dislocation. These conditions can limit the space in the abdomen necessary to carry a full-term fetus. These abnormalities can make vaginal delivery difficult. In these cases, a Caesarean section (C-section) may be necessary.

Once the baby is born, the decision on whether or not to breast-feed must be made.

Although breast-feeding is possible for most women, you may notice an increase in your spasticity as you breast-feed. Also, breast-feeding normally stimulates the production of breast milk, so women with limited sensation in their nipples may notice a reduction in milk.

Although there are risks for complications related to pregnancy, risks can be reduced and managed through proper prenatal care and adequate planning.

REHABILITATION

Individuals who have recently suffered a spinal cord injury (SCI) may experience many emotions, such as fear or anxiety. Many individuals may require spinal cord injury rehabilitation to adapt to a new way of life after the injury.

How Does Rehabilitation Help People Recover From Spinal Cord Injuries?

No two individuals will experience the same emotions after surviving a spinal cord injury, but almost everyone will feel frightened, anxious, or confused about what has happened. Individuals commonly have very mixed feelings after suffering an SCI: relief that they are still alive, but disbelief at the nature of their disabilities.

Rehabilitation programs combine physical therapies with skill-building activities and counseling to provide social and emotional support. The education and active involvement of the injured individual and his or her family and friends is critical.

A rehabilitation team is usually led by a doctor specializing in physical medicine and rehabilitation (called a physiatrist), and often includes social workers, physical and occupational therapists, recreational therapists, rehabilitation nurses, rehabilitation psychologists, vocational counselors, nutritionists, and other specialists. A case-worker or program manager coordinates care for the injured individual.

In the initial phase of rehabilitation, therapists emphasize regaining leg and arm strength since mobility and communication are the two most important areas of function. For some, mobility will only be possible with the assistance of devices such as a walker, leg braces, or a wheelchair. Communication skills, such as writing, typing and using the telephone may also require adaptive devices.

Physical therapy includes exercise programs geared toward muscle strengthening. Occupational therapy helps redevelop fine motor skills. Bladder and bowel management programs teach basic toileting routines, and patients also learn techniques for self-grooming. People acquire coping strategies for recurring episodes of spasticity, autonomic dysreflexia, and neurogenic pain.

Vocational rehabilitation begins with an assessment of basic work skills, current dexterity, and physical and cognitive capabilities to determine the likelihood for employment. A vocational rehabilitation specialist then identifies potential work places, determines the type of assistive equipment that will be needed, and helps to arrange for a user-friendly workplace. For those individuals whose disabilities prevent them from returning to the workplace, therapists focus on encouraging productivity through participation in activities that provide a sense of satisfaction and self-esteem. This could include educational classes, hobbies, memberships in special interest groups, and participation in family and community events.

Recreation therapy encourages patients to build on their abilities so that they can participate in recreational or athletic activities at their level of mobility. Engaging in recreational outlets and athletics helps those with spinal cord injuries achieve a more balanced and normal lifestyle and also provides opportunities for socialization and self-expression.