American Academy of Orthotists & ProsthetistsAmerican Board for CertificationAmerican Orthotic & Prosthetic Association
Font Adjust
Normal Font Size Large Font Size Extra Large Font Size

 


Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations and prevention tips for patients and caregivers.
Cerebral Palsy Muscular Dystrophy Plagiocephaly
Scoliosis Spinal Cord Injury Vascular Diseases
Diabetes    

Help for Patients and Caregivers : Spinal Cord Injury

Quick reference directory:

What is Spinal Cord Injury?
What is the Spinal Cord and the Vertebra?
What is Spinal Stenosis?
What are the effects of SCI?
How many people have SCI?

 


What is Spinal Cord Injury?

Spinal Cord Injury (SCI) is damage to the spinal cord that results in a loss of function such as mobility or feeling. Frequent causes of damage are trauma (car accident, gunshot, falls, etc.) or disease (polio, spina bifida, Friedreich's Ataxia, etc.). The spinal cord does not have to be severed in order for a loss of functioning to occur. In fact, in most people with SCI, the spinal cord is intact, but the damage to it results in loss of functioning. SCI is very different from back injuries such as ruptured disks, spinal stenosis or pinched nerves.

A person can "break their back or neck" yet not sustain a spinal cord injury if only the bones around the spinal cord (the vertebrae) are damaged, but the spinal cord is not affected. In these situations, the individual may not experience paralysis after the bones are stabilized.


What is the Spinal Cord and the Vertebra?

Spinal Cord Diagram

The spinal cord is about 18 inches long and extends from the base of the brain, down the middle of the back, to about the waist. The nerves that lie within the spinal cord are upper motor neurons (UMNs) and their function is to carry the messages back and forth from the brain to the spinal nerves along the spinal tract. The spinal nerves that branch out from the spinal cord to the other parts of the body are called lower motor neurons (LMNs). These spinal nerves exit and enter at each vertebral level and communicate with specific areas of the body. The sensory portions of the LMN carry messages about sensation from the skin and other body parts and organs to the brain. The motor portions of the LMN send messages from the brain to the various body parts to initiate actions such as muscle movement.

The spinal cord is the major bundle of nerves that carry nerve impulses to and from the brain to the rest of the body. The brain and the spinal cord constitute the Central Nervous System. Motor and sensory nerves outside the central nervous system constitute the Peripheral Nervous System, and another diffuse system of nerves that control involuntary functions such as blood pressure and temperature regulation are the Sympathetic and Parasympathetic Nervous Systems.

The spinal cord is surrounded by rings of bone called vertebra. These bones constitute the spinal column (back bones). In general, the higher in the spinal column the injury occurs, the more dysfunction a person will experience. The vertebra are named according to their location. The eight vertebra in the neck are called the Cervical Vertebra. The top vertebra is called C-1, the next is C-2, etc. Cervical SCI's usually cause loss of function in the arms and legs, resulting in quadriplegia. The twelve vertebra in the chest are called the Thoracic Vertebra. The first thoracic vertebra, T-1, is the vertebra where the top rib attaches.
Injuries in the thoracic region usually affect the chest and the legs and result in paraplegia. The vertebra in the lower back between the thoracic vertebra, where the ribs attach, and the pelvis (hip bone), are the Lumbar Vertebra. The sacral vertebra run from the Pelvis to the end of the spinal column. Injuries to the five Lumbar vertebra (L-1 thru L-5) and similarly to the five Sacral Vertebra (S-1 thru S-5) generally result in some loss of functioning in the hips and legs.

What are the effects of SCI? The effects of SCI depend on the type of injury and the level of the injury. SCI can be divided into two types of injury - complete and incomplete. A complete injury means that there is no function below the level of the injury; no sensation and no voluntary movement. Both sides of the body are equally affected. An incomplete injury means that there is some functioning below the primary level of the injury. A person with an incomplete injury may be able to move one limb more than another, may be able to feel parts of the body that cannot be moved, or may have more functioning on one side of the body than the other. With the advances in acute treatment of SCI, incomplete injuries are becoming more common.
The level of injury is very helpful in predicting what parts of the body might be affected by paralysis and loss of function. Remember that in incomplete injuries there will be some variation in these prognoses.

Cervical (neck) injuries usually result in quadriplegia. Injuries above the C-4 level may require a ventilator for the person to breathe. C-5 injuries often result in shoulder and biceps control, but no control at the wrist or hand. C-6 injuries generally yield wrist control, but no hand function. Individuals with C-7 and T-1 injuries can straighten their arms but still may have dexterity problems with the hand and fingers. Injuries at the thoracic level and below result in paraplegia, with the hands not affected. At T-1 to T-8 there is most often control of the hands, but poor trunk control as the result of lack of abdominal muscle control. Lower T-injuries (T-9 to T-12) allow good truck control and good abdominal muscle control. Sitting balance is very good. Lumbar and Sacral injuries yield decreasing control of the hip flexors and legs.

Besides a loss of sensation or motor functioning, individuals with SCI also experience other changes. For example, they may experience dysfunction of the bowel and bladder,. Sexual functioning is frequently with SCI may have their fertility affected, while women's fertility is generally not affected. Very high injuries (C-1, C-2) can result in a loss of many involuntary functions including the ability to breathe, necessitating breathing aids such as mechanical ventilators or diaphragmatic pacemakers. Other effects of SCI may include low blood pressure, inability to regulate blood pressure effectively, reduced control of body temperature, inability to sweat below the level of injury, and chronic pain.


What is Spinal Stenosis?

The spinal canal is like a tunnel which runs up and down the human spine. This canal sits directly behind the bony blocks which make up the spine (vertebrae) and contains the nerves (spinal cord and nerve roots) running from the brain to all areas of the body

When something causes a narrowing of this canal then the nerves can become irritated or squeezed. This can lead to a variety of symptoms ranging from tingling, numbness, and weakness to severe pain and paralysis. Common conditions which can narrow the spinal canal include a herniated disc (often called a slipped disc), fracture of the spine, tumor, infection and degeneration. A set of symptoms related to narrowing of the spinal canal seen with aging and degeneration is called spinal stenosis. The symptoms of spinal stenosis most commonly include a sensation of heaviness, weakness and pain with walking or prolonged standing. At rest these symptoms usually disappear. These symptoms are related to the irritation of the nerves in the spinal canal which is worsened with standing or walking due to mechanical compression or stretching of the nerves. Patients often complain of a gradual decrease in their ability to walk, requiring more frequent stops to rest their legs. The treatment for spinal stenosis is dependant on the severity of symptoms. Generally, aerobic activities like walking combined with a guided exercise program and weight loss (in overweight patients) is recommended first.

When there is no relief, some specialists recommend injection treatments although the effectiveness of this is limited. Surgery is indicated when symptoms are severe, progressive and a specific area of narrowing in the spinal canal has been discovered. The surgical procedure is aimed at freeing up the nerves in the canal by removing pieces of bone and thickened tissues such as the ligaments. A spinal fusion may also be necessary to stabilize the spine

The spine consists of a series of bone blocks (vertebral bodies) which are separated from one another by discs of soft tissue. Within the structure of the spine sits a tunnel called the spinal canal. This tunnel contains the neurologic structures including the spinal cord and nerve roots. Although there is some free space between the neurologic structures and the edges of the spinal canal, this space can be reduced by many different conditions including injury to the spine. The canal is surrounded by bone and ligaments and therefore can not expand if the spinal cord or nerves require more room. Therefore, if anything begins to narrow the spinal canal, there is risk for irritation or injury of the spinal cord or nerves. Conditions which can lead to narrowing of the spinal canal include infection, tumors, trauma, herniated disc, arthritis and degeneration.

Spinal stenosis refers to the condition of neurologic problems associated with narrowing of the spinal canal due to degenerative changes in the spine. Arthritis of the small joints in the spine (facets) as well as thickening of ligaments and formation of bony spurs can all lead to gradual squeezing and irritation of neurologic structures. This process is usually gradual and can lead to symptoms such as pain with walking, a decreased endurance for physical activities, heaviness in the legs, tingling sensations, tightness and numbness in the legs with activity, and often associated low back pains.

Treatment for spinal stenosis ranges from physical therapy to epidural injections and finally surgery in certain cases. Since patients affected by spinal stenosis are usually elderly, treatment must carefully consider not only the disease in the spine but also the risks and benefits of treatment in each individual. Although therapy and steroid injections into the affected area of the spine can offer good relief in some patients, there are people who will only get temporary relief if at all. In patients who have failed non-operative treatment, surgery can sometimes be considered. Prior to designing a treatment plan for any individual, careful diagnosis must be made. This will often involve tests such as an MRI, CT scan, or myelogram and plain X-rays. In those patients who are candidates for surgery, the goal is to free up the constricted regions of the spinal canal to ensure freeing the affected neurologic structures. Occasionally, in order to stabilize a degenerated part of the spine, a fusion will be performed. This involves laying down of bone over an area of the spine so that a solid block is created where there was previously arthritis with pain and an unstable spine.

Surgery for spinal stenosis has a high success rate in patients carefully selected for this procedure. It remains a useful approach in treatment when other options have been exhausted and after careful review of risks and benefits with the patient.


What are the effects of SCI?

The effects of SCI depend on the type of injury and the level of the injury. SCI can be divided into two types of injury - complete and incomplete. A complete injury means that there is no function below the level of the injury; no sensation and no voluntary movement. Both sides of the body are equally affected. An incomplete injury means that there is some functioning below the primary level of the injury. A person with an incomplete injury may be able to move one limb more than another, may be able to feel parts of the body that cannot be moved, or may have more functioning on one side of the body than the other. With the advances in acute treatment of SCI, incomplete injuries are becoming more common.

The level of injury is very helpful in predicting what parts of the body might be affected by paralysis and loss of function. Remember that in incomplete injuries there will be some variation in these prognoses.

Cervical (neck) injuries usually result in quadriplegia. Injuries above the C-4 level may require a ventilator for the person to breathe. C-5 injuries often result in shoulder and biceps control, but no control at the wrist or hand. C-6 injuries generally yield wrist control, but no hand function. Individuals with C-7 and T-1 injuries can straighten their arms but still may have dexterity problems with the hand and fingers. Injuries at the thoracic level and below result in paraplegia, with the hands not affected. At T-1 to T-8 there is most often control of the hands, but poor trunk control as the result of lack of abdominal muscle control. Lower T-injuries (T-9 to T-12) allow good truck control and good abdominal muscle control. Sitting balance is very good. Lumbar and Sacral injuries yield decreasing control of the hip flexors and legs.

Besides a loss of sensation or motor functioning, individuals with SCI also experience other changes. For example, they may experience dysfunction of the bowel and bladder,. Sexual functioning is frequently with SCI may have their fertility affected, while women's fertility is generally not affected. Very high injuries (C-1, C-2) can result in a loss of many involuntary functions including the ability to breathe, necessitating breathing aids such as mechanical ventilators or diaphragmatic pacemakers. Other effects of SCI may include low blood pressure, inability to regulate blood pressure effectively, reduced control of body temperature, inability to sweat below the level of injury, and chronic pain


How many people have SCI?

Approximately 450,000 people live with SCI in the US. There are about 10,000 new SCI's every year; the majority of them (82%) involve males between the ages of 16-30. These injuries result from motor vehicle accidents (36%), violence (28.9%), or falls (21.2%).Quadriplegia is slightly more common than paraplegia.


For more information on Spinal Cord Injury visit:

- Foundation for Spinal Cord Injury Prevention, Care and Cure
- Spinal Cord Injury Resource Center

CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.

1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.

<<Back to Top>>

Tips for Family Caregivers from Doctors

•   Write questions down so you won’t forget them.
•   Be clear about what you want to say to the doctor. Try not to ramble.
•   If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
•   Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
•   Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
•   Recognize that not all questions have answers—especially those beginning with “why.”
•   Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
•   Appreciate what the doctor is doing to help and say thank you from time to time.

<<Back to Top>>

Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is “yes,” you’re not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

•   Gathering information from healthcare providers;
•   An assessment of your care recipient and the home environment;
•   Research into available public and/or private services and resources to meet      your loved one’s needs; and
•   Ongoing communication between all parties to keep information up to date      and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one’s health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you’ll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control — a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you’re dealing. Reliable information is available from the health agency that deals with your loved one’s condition and the National Institutes of Health. When using the Internet, stick with wellknown medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:

•   Your loved one’s ability to function independently, both physically and mentally.
•   The availability of family and/or friends to form a support network to share the care.
•   The physical environment: Is it accessible or can it be adapted at reasonable cost?
•   Your other responsibilities — at work, at home, and in the community.
•   Your own health and physical abilities.
•   Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you’ve learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what’s going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one’s care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you’ll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn’t family caregivers?

Start advance planning for difficult decisions that may lie ahead. It’s never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you’ll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It’s extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

<<Back to Top>>

Seating & Mobility - As a caregiver, you need to be very understanding to the individuals needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. Getting them involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manor. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.

<<Back to Top>>

Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs such office on disabilities, elder affairs, or material and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

•  http://www.caregiver.org
•  http://www.caregiving.org
•  http://www.caregiving.com
•  http://www.caregiver.com

<<Back to Top>>