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The staff of the center has recently spent a lot of time and effort in revising this manual. However, we realize that those who are actively reading and using the manual can improve it. As a part of our program of continuous quality improvement, we ask you to help guide our efforts to improve the manual.

In the next section of the chapter are two forms. The first form is an overview by chapter that seeks to identify those areas of the manual that could benefit the most from additional work. We also seek to identify any major areas of concern that have not been addressed.

The second section is a more focused questionnaire that has as its goal the specific items that should be targeted. For example, should an item be added to the glossary or the definition changed. Should a drug be added to the discussion of bowel programs?

The more specific the comments are the more likely that we will be able to make the improvements that form the basis of your idea. By communicating with the Regional Spinal Cord Injury Center of the Delaware Valley, however, users grant us permissionto use any information, suggestions, ideas, drawings or concents communicated for any purpose we choose, commercial, public or otherwise, without compensation or acknowledgement whatsoever.

Thank you for taking the time to assist us in improving this manual. Sincerely,

SCI Manual Committee Regional Spinal Cord Injury Center of the Delaware Valley Thomas Jefferson University Hospital 132 S. 10th Street 375 Main Building Philadelphia, PA 19107

The Spinal Cord Injury Follow-Up Care System is a program that will assist you in your lifetime care once you are discharged from the hospital. The follow-up care system is structured with primary team members being you and your family, the physiatrist (doctor who specializes in physical therapies), nurse clinician and case manager. Team members available for consultation include physical therapists, occupational therapists, recreational therapists, speech therapists, dietitians, urologists, gynecologists, plastic surgeons and podiatrists.

The nurse clinicians are available in the Spinal Cord Injury Follow-Up Clinic at Magee Rehabilitation Hospital and act as the coordinator and liaison between the spinal cord-injured person and all members of the team. The coordination of care is essential to decrease duplication of services and contradictions of management. This will provide you with a consistent person to contact.

The comprehensive follow-up service is then provided through regularly scheduled appointments — the first at one month and then annually. Your inpatient case manager will schedule your one month appointment. You will receive a reminder letter through the mail from the outpatient scheduler, giving specific instructions for your visit. At that visit, you will spend time with each of the primary team members and any consulting members that you request.

The team will discuss your current needs and problems and assist you in addressing them. Some of the commonly discussed areas include medical, equipment, transportation, vocational, educational and adjustment issues.

In addition to your formal appointments, the follow-up nurses are available for questions or problems. They will either discuss the issue over the phone or they may want to have you come in for an evaluation by your physiatrist.

The Spinal Cord Injury Follow-Up Care System also works closely with family members, support groups, family physicians, visiting nurses, therapists, consulting physicians and others involved with your care, helping them to understand spinal cord injury and your individual needs. After each scheduled appointment, a comprehensive report is written, which can be sent to anyone involved in your care.

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In this section, you will learn how spinal cord impairments can affect the way that you feel about yourself as a man or woman as well as how spinal cord impairments can affect the way that you function sexually. Information on sexuality, sexual functioning, birth control, erectile dysfunction and having a baby may be important to you today, or these issues may be something that you choose to put away and think about at another time. In either case, this information is just a starting point. Feel free to ask questions and share your concerns and thoughts with the staff. If the staff doesn’t know the answers to your questions, they will find someone who does.

Sexuality

When you hear the word sexuality what do you think of? For some people, it means “having sex.” For others, it includes thoughts and feelings about body image, self-esteem, appearance, communication skills, beliefs and values, relationships, and sexual function. The definitions of sexuality are different from person to person, and there is no right or wrong one. Webster’s dictionary defines sexuality as “the quality of being sexual.” But what does that mean? Whatever makes you feel like a sexual person is a part of that word’s definition.

Let’s take a look at what some of these other concepts mean.

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Travel and transportation includes driving or being a passenger in a car or van, or traveling in an airplane, bus, train or ship. After a spinal cord impairment, traveling for business or pleasure can be an overwhelming experience. Being well prepared in advance will decrease stress and make your trip enjoyable.

This chapter provides tips regarding traveling with a power or manual wheelchair, purchasing or renting durable medical equipment, medication management, bowel and bladder issues, traveling registrations and organizing recreational activities.

Driving

When you are ready to consider driving, it is suggested that you discuss financial coverage with your occupational therapist and case manager. If you are a vocational rehabilitation client, please consult with your therapist or rehabilitation counselor regarding driving evaluation, training and equipment coverage.

A referral can be made to link you up to the appropriate programs that evaluate your potential to drive safely. A comprehensive evaluation will be completed to evaluate your visual skills, motor skills, reaction time, transfer skills, hand function and driving knowledge. As a result of the evaluation, a recommendation can be made as to your ability and readiness to drive.

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Your free time and the way you use that time can be a source of pleasure, enjoyment and self-fulfillment for you. You will probably have many questions about your injury’s effect on your ability to participate in your favorite activities and sports. Recreational therapy is available to assist you in answering your many questions and concerns and helping you plan a satisfactory leisure lifestyle for yourself.

What is Recreational Therapy?

Recreational therapy is a form of treatment that uses recreational activities to work on your rehabilitation goals. Through using your existing recreational skills and interests, recreational therapy can address many of your goals, including:

• Improve Physical Abilities – Improving muscle strength, balance, coordination, flexibility, mobility and range of motion.

• Promote Greater Self-Reliance – Awareness toward independent living and self-determination.

• Enrich the Quality of Life – Opportunities for creativity, self-expression and a productive sense of the self by using leisure time well.

• Manage Stress – Activities that relax both mind and body from tension and pressures.

• Community Re-Integration – Activities that nurture social relationships and encourage leisure activity in your community. As well as, practicing any mobility skills in a community setting.

Recreational therapy can be grouped into three types of service: treatment, leisure education and diversional activities.

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Vocational services are available to you during the course of your rehabilitation to assist you in returning to work or school or exploring vocational and educational options. These services may be initiated while you are in the hospital and can continue after you are discharged. You may start to receive vocational services from the vocational counselor at Magee Rehabilitation Hospital, and at the same time, referred to the state agency designated to assist in vocational rehabilitation. Ultimately, you may return to your pre-injury job, or you may embark on a new educational or vocational path.

Vocational Consultation

During the course of your rehabilitation at Magee, you will be offered the opportunity to have a consultation with a vocational counselor. The purpose of the consultation, which starts with an individual interview with the counselor, is to gather information about your previous educational and vocational experience and to assist you in exploring your options and goals. The vocational counselor will help to initiate and coordinate the services that are needed to help you resume work or attain new vocational goals.

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A sudden trauma like a spinal cord injury will have a significant impact on you and the people close to you. You may see parts of your life change a great deal. Other parts of your life may not change at all. Regardless of the extent of your injury and disability, being hurt and having a disruption to your life may present unexpected problems or changes. This chapter provides information about services that are available at Thomas Jefferson University Hospital, Magee Rehabilitation Hospital and in the community to provide assistance.

Coping with a Spinal Cord Injury

After a spinal cord injury, you may experience many different feelings at one time or another, such as anger, worry, sadness, even hopelessness. These feelings are more likely to occur when you are under stress — as when your body undergoes dramatic changes in its functioning or when you have been in the hospital for a long time. Sometimes they are aimed in the wrong direction, like when your are really angry with one person or situation and you are nasty to someone else.

While you are still basically the same person inside, there are many adjustments that you are going through. Rehabilitation is aimed at helping you learn new things — both physical and emotional, so that you can learn to live with your change of body functioning and all the changes in your life that it may bring.

The emotional changes and behaviors you see in yourself may surprise you. It is important to recognize that what you are experiencing is normal, and also that what is normal for you may be very different from how someone else reacts. Really, if you think about it, it would be unnatural not to have some sort of reaction. Another aspect of dealing with this whole business of coping has to do with change. This is a transitional period for you. What is true for you today or this week may be different next week or next month. People change at their own speed.

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Mobility is defined as those activities involved in getting you out of bed into a wheelchair, movement in the wheelchair, standing and walking. This is accomplished by first stabilizing the spine through surgery, external immobilization (bracing, traction or casting), or both, so you can safely move without further damage to your spinal cord. Following your spinal cord impairment, you are limited in the ability to move because of muscle weakness, immobilization devices, bed rest, or a combination of these factors. Since staying in one position for long periods of time can lead to other medical complications such as skin breakdown, infections, pneumonia and joint contractures, it is important to get you moving as quickly as possible, but in a way that is safe for your spine. It is very important for you to keep in mind that the amount of independence you achieve is not only based on the level of your injury and associated medical complications, but also on your motivation and effort in completing your rehabilitation program. Complications interfering with mobility include: contractures (permanent shortening of a muscle), heterotopic ossification (calcium build up around a joint), osteoporosis (loss of bone matter) and spasticity (over-activity of a muscle, causing muscular tension).

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During your stay in the hospital, various pieces of equipment will be given to you or ordered for you. Your therapists or nurse will be instructing you in the use, care and repair of this equipment. Also, you will find materials in this section regarding specialized equipment that you may need during your hospital stay and following discharge. There are also reference materials about equipment you may need in the future.

If you have any questions about your equipment while in the hospital, contact your therapist, nurse or case manager.

As part of your follow-up program, equipment will be reviewed and re-evaluated from time to time. If you have questions about equipment after discharge, contact the SCI Follow-Up Clinic for a nurse clinician who will direct you to the proper source.

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Activities of daily living (ADL) include eating, drinking, functional bathing, grooming, dressing and toileting. Also included are functional transfers, EADL (Electronic Aids for Daily Living) and home management.

As soon as it is appropriate, you will be encouraged to perform as many of your own ADLs as you can. You may need to learn new techniques, use assistive devices to compensate for decreased muscle strength and range of motion or to compensate for decreased endurance.

ADL training will begin when your therapist determines that you have enough strength, balance and skill to do these tasks. You may practice these skills with the therapist in the therapy gym or at your bedside. Your cooperation is necessary to obtain the highest level of independence possible.

The techniques described on the following pages have been helpful for many patients in achieving partial to total independence with ADLs. Some of the side benefits of ADL practice include increased range of motion and muscle strength, increased general endurance, improved balance and increased flexibility. Independence with ADLs can contribute to increased self esteem and confidence as well.

You may practice these techniques and decide with your therapist which activities are easiest to complete in bed, in a chair or in a wheelchair. Over time, the techniques you use for ADLs may change.

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Nutrition is important for everyone to maintain good health. After a spinal cord injury, nutrition can be even more important to improve overall wellness, achieve and maintain a healthy weight and help regulate bowel and bladder function. Eating a well balanced diet can help prevent the long term complications associated with SCI such as weight gain, deconditioning and skin breakdown.

A well-balanced diet can provide all of the nutrients that your body needs. Foods high in fiber, along with plenty of water, help regulate bowel function. However, if you eat more than you need, you can gain weight. The goal of a balanced diet is to consume adequate calories to maintain a healthy weight while getting all the nutrients that your body needs. If weight control is a problem, you can learn to decrease your calorie intake without giving up important nutrients, such as protein.

There are several nutrition classes offered at Magee Rehabilitation Hospital to SCI inpatients and their caregivers that review general nutritional needs in SCI. In addition, a registered dietitian is available at Magee to discuss individual nutritional needs. As an inpatient, you can ask your nurse or doctor to see the dietitian. To contact a dietitian after discharge, call 215-587-3059.

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Cardiovascular problems affect all people who have a spinal cord injury. It has been noted to be particularly problematic for those over 65 years old and those who have been injured for more than 30 years. Due to this problem affecting many people, it needs to be addressed early in your rehabilitation as well as throughout your life.

Description of the Cardiovascular System

The cardiovascular system contains the heart and the blood vessels. The heart is a muscular pump in the chest that receives blood from blood vessels from all over the body. As the heart beats, it delivers blood to the lungs so that oxygen can be exchanged. This oxygenated blood is then given back to the heart and pumped to all the organs throughout the body. The blood vessels are the arteries, capillaries and veins that are located throughout the body. The blood vessels carry blood to all the tissues of the body and remove the tissues’ waste products.

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The skin is a vital part of the body with many necessary functions:

• The skin protects you from the environment. When your skin is intact, there is a barrier against bacteria and injury to the organs inside of the body. It prevents too much sunlight or harmful chemicals from entering the body.

• The skin helps you stay warm or cool. Your sweat glands produce sweat and cool you off as the sweat evaporates from the skin.

• Nerve endings in the skin send messages to the brain to give you information about pain, temperature and touch.

Changes in Skin Function After Spinal Cord Injury

After spinal cord impairment, the skin loses its ability to protect itself against harmful things. The nerves in parts of your skin, at and below the level of your spinal impairment, may not be able to send accurate information to the brain because of damage to the spinal cord. You may not be able to notice the difference between hot and cold. You may not feel a pin prick or know if someone has moved your leg. Unless you look, you cannot always tell where your legs, arms or fingers are.

A pressure ulcer is a complication that may occur as a result of your spinal cord impairment. A pressure ulcer is an area of tissue damage caused by not relieving pressure. The area is usually over a bony prominence.

In this section, you will find information on how to take care of your skin, how to prevent pressure ulcers and how to care for a pressure ulcer if one occurs.

You will learn safety measures to protect yourself from harmful things in the environment, and how to check your skin regularly for potential problems.

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One of the most important aspects of spinal cord injury care is respiratory management. The previous chapter deals with the effect spinal cord injury has on your ability to breathe while this chapter deals with the management of individuals who are dependent on a ventilator to breathe. This dependency may be temporary or permanent, depending on your level of injury. Please review the previous chapter prior to reading this one.

Artificial Airways

The first step in trying to maintain normal respiratory function is to establish an airway. Spinal cord injury does not affect your airway. However, in order to re-establish respiratory function, an artificial airway is needed to work with the ventilator. At first, this is done by using an endotracheal tube (ET tube). This tube is inserted through your nose or mouth and into your trachea. The ET tube has a balloon, which is inflated. This helps to prevent air from leaking into your nose or mouth. The ET tube is held in place with tape to the person’s cheeks. The ET tube provides a passage through which either a manual resuscitator or a ventilator can deliver air.

The ET tube is considered temporary. If the person needs ventilatory assistance for a long time, a tracheostomy may be performed. Tracheostomy tubes are more comfortable for people and provide options for communication that an ET tube cannot. A tracheostomy is a sterile procedure that is done in the operating room. An incision is made into the person’s trachea and a shorter tube, similar to the ET tube, is inserted. The tracheostomy tube is held in place with ties that look similar to a shoestring. Many companies make tracheostomy tubes, each with pluses and minuses. Generally, the first tracheostomy tube that is placed is called a non-fenestrated, cuffed tube. This tube does not allow the individual to speak, and the cuff helps the individual to protect his or her airway from food, as well as helps to keep the air from leaking into the nose and mouth. The tubes can be adapted to meet the individual’s needs. A tracheostomy tube can be replaced or changed as your needs change.

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Spinal cord injury can affect normal breathing. The level of your injury will determine the effect it will have. It can be different for everyone. For example, the higher the level of your injury, the more complications you may face. Good pulmonary care can assist in keeping you healthy after your spinal cord injury.

Normal

The process of breathing (or respiration) is a two-step process: taking in air (inspiration) and exhaling the waste products. The process of taking in air (inhalation) is an active process, requiring the use of many muscles, while the process of exhaling is a passive process, which occurs when the muscles relax. The muscles of respiration include the diaphragm, and a group of muscles called the accessory muscles. The muscles included in the “accessory group” include your neck muscles, your chest wall muscles and your abdominal muscles. These muscles are the ones that are used when you run or are stressed and assist the diaphragm in taking in larger amounts of air. If your injury is high enough, the neck accessory muscles may become the primary muscles of respiration. By themselves, these muscles are unable to bring in enough air to maintain life on a daily basis. When this occurs, assisted ventilation is used. This assistance can be in the form of a ventilator, phrenic (a nerve that helps make the muscle of breathing work properly) pacers or other non-invasive methods of breathing. Assisted ventilation is used along with other therapies and treatments to try to maintain good pulmonary condition. Without this assistance, the person could suffer severe tissue damage, brain damage or death.

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Spinal Cord Injury (SCI) changes the way your body works, especially your bowels. After a spinal cord injury, bowel movements (or stool) require more time, thought and planning. Usually, people with SCI cannot feel when stool is ready to come out; therefore, their bowels need re-training.

Anatomy

What Is the Bowel, and What Does It Do?

The bowel is the last portion of your digestive tract and is sometimes called the large intestine or colon. The digestive tract as a whole is a hollow tube that extends from the mouth to the anus (see illustration below). The function of the digestive system is to take food into the body, provide it with nutrients and get rid of waste. The bowel is where the waste products of eating are stored until they are emptied from the body in the form of a bowel movement (stool, feces). A bowel movement happens when the rectum (last portion of the bowel) becomes full of stool and the muscle around the anus (anal sphincter) opens.

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Your bladder and urinary system play a very important part in keeping you healthy by acting like a “filter” and getting rid of the waste products from food and fluid that you have eaten and absorbed. After you have had a spinal cord injury, you often lose your ability to control urination. You may not be able to feel that your bladder is full, and if you can feel it, you may not be able to empty it.

It is important to note here that the changes that occur in your bladder will be unique to you. Although there are similarities, no two people with spinal cord injuries will have the exact same Bladder Management Program or the same response to their program. There may be some slight differences based on your unique experience; however, the function and the change of the function in your bladder after spinal cord injury is important for you to understand and master to maintain your health after your injury.

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The vertebrae are connected to each other with a system of ligaments. These ligaments help the spinal column to remain straight, as well as give it the ability to twist and turn. When a spinal injury has occurred, often times there is damage to the ligaments. It is not uncommon for the vertebrae to be injured and the spinal cord to be fine. However, the spinal cord can be injured with or without injury to the spinal column. There are thirty vertebrae. The spinal column is divided into sections. These sections are similar to the segments of the spinal cord.

These segments are:

• Cervical: 7 vertebrae (neck)

• Thoracic: 12 vertebrae (rib cage)

• Lumbar: 5 vertebrae (mid-back)

• Sacral: 5 vertebrae (lower back) (These bones fuse and become one.)

• Coccyx: 1 vertebrae (“tailbone”)

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