Living With Multiple Sclerosis Disease Progression
Elizabeth Auld, PA- C––Spinal Cord Program, MSCS,VA Connecticut Healthcare System,West Haven, Connecticut
Introduction
Research into what is happening to the central nervous system in multiple sclerosis (MS) gives hope that the disease can be slowed and eventually cured or prevented. Realistically, persons with MS understand that until there is a cure, they will have to accept and make the best of what is, in fact, a disabling disease. They realize that at some point, and in ways they cannot predict, they will have symptoms and changes in how their bodies work. Neurologists can try to predict the disease course for their patients; research provides some clues as to how fast or how slowly persons with MS will begin to experience significant disability. A study by Koch and colleagues concludes that “development of progressive disease is an age dependent process,†or in simpler terms, disability is more related to the age of the person than whether they have the relapsing or progressive form of the disease.
For someone with MS, however, this becomes rather academic. Your questions are likely to be: How disabled will I become? What sort of disability will I have? When will this happen? Can I prevent disability? The focus of this article is to offer you some guidance on how to stay healthy, adapt to some of the changes in function due to MS, and anticipate and perhaps prevent some of the worst medical problems of progressive MS.
Staying Healthy
The recommendations for a healthy lifestyle are basically the same for everyone (Table 1). Whether having MS helps protect against some other common illnesses or increases the risk of having some illnesses is the subject of ongoing research. MS does not appear, however, to protect against other medical problems, such as heart disease, diabetes, stroke, cancer, accidents, and communicable diseases. Because MS involves the immune system, it could be argued that it is even more important for persons with MS to stay healthy and avoid illnesses and diseases than for the general population. It may be more difficult, however, for someone with MS to obtain some of this care on a regular basis for reasons ranging from accessibility to mistaken beliefs among some primary care clinicians. An easy to read and easy to access publication on the National Multiple Sclerosis Society’s (NMSS) Web site, titled Primary Care in MS, provides an excellent guide to preventive health and wellness guidelines. It is useful for persons with MS, their families, and especially their primary care clinicians.
In some cases, persons with MS may refuse some of the items listed in Table 1, or find them very difficult to do. We discuss some of these––immunizations, colonoscopy, and smoking cessation before turning to specific concerns related to MS progression and disability.
Immunizations
Persons with MS are often afraid that immunization will trigger a relapse or worsening of their MS. These fears are understandable, as immunization does demand a response from the immune system to establish the desired immunity. In many cases, however, having the illness targeted by the vaccination or immunization is more likely to make MS worse, at least in the short term. So how do you know what to do? Should you get a flu shot, or a pneumonia shot or some other recommended vaccination? The short answer is yes, probably. You should discuss the risks and benefits with a doctor you trust.
Colonoscopy
Another important test that is often refused, even by persons with no mobility or bowel dysfunction, is colonoscopy. This test is the cornerstone of colon cancer prevention and is recommended for all persons over age 50, and younger if there is a family history of colon cancer at a young age. Bowel preparation is important––a less than adequate study is almost useless and not worth the effort while a good study can save lives. If normal, the procedure is not done again for 10 years. It is important to let your physicians know of problems like constipation as they may need to adjust the instructions for cleaning out your colon. Another argument for colonoscopy is that bowel habits in persons with MS fluctuate and make it difficult to determine when abnormalities might be a sign of early colon cancer.
Smoking
Smoking is a known risk factor for lung cancer, emphysema, and cardiovascular disease. As if that was not enough to make persons with MS want to stop smoking, there is increasing evidence that smoking contributes to the onset and progression of MS. (Hernan, Olek, & Ascherio 2001; Hernan, Jick, Logroscino, Olek 2005). So how do you stop smoking? You may have already tried and failed. But you didn’t learn to swim or ride a bike without effort and failure. It’s time to try again. There is a new medication (varenicline, Chantix™) which is proving very helpful. Unlike the other prescription medication (wellbutrin, Zyban™), this new medicine is not an antidepressant and is therefore likely to be more compatible with other medications you are taking. It is also safe for persons with seizures, which are a problem experienced by some people with MS. The message, however, is loud and clear: smoking cessation will not hurt and may help the course of your disease. How to stop depends on your situation and prior experience with smoking cessation. The most important step is deciding to quit (see sidebar on Smoking Cessation, page 17).
Preventing Problems
The first important step to preventing (or minimizing) the problems that come with disease progression is to do everything you can to control your disease (including using recommended disease-modifying medications, and following the guidelines in the preceding section). The second part of this article focuses on the unavoidable fact that disability from MS will likely continue to increase and that the pace and type of the disability from MS is unpredictable. Since, in most cases, the disability (and problems that may result) tend to accumulate slowly, persons with MS often do not receive the same evaluations and help as someone who becomes disabled as a result of an acute injury. This article focuses on two areas— respiratory compromise and mobility (i.e., falls, fractures, and pressure ulcers)—which together cause many of the major medical problems and even deaths of persons with MS. Others (i.e., tremor, bowel, bladder, pain, cognition) have been discussed in recent issues of MSQR.
Respiratory Dysfunction
One of the most frequent causes of death in people with MS is pneumonia, caused by swallowing dysfunction, aspiration, and inability to cough. This occurs after many years in persons with major disabilities. Interventions like tubes in the stomach for nutrition, positioning, good pulmonary care (i.e., suctioning, percussion vests, chest percussions, assisted cough maneuver, cough-assist machines) can add years to life at this stage.
The principle cause of pulmonary complications in severe MS is respiratory muscle dysfunction, but studies have begun to focus on how degree of overall disability (especially ability to walk) may relate to respiratory muscle weakness. One recent study (Altintas, Demir, Ikitimur, & Yildirim, 2007) of persons with MS who could walk and had no respiratory complaints documented decreases in inspiratory and expiratory muscle function and in the amount of oxygen and carbon dioxide exchange compared with healthy subjects. Tests of the strength of breathing muscles in non-ambulatory persons with MS show results ranging from about 25% to 75% of predicted values for healthy persons. Perhaps more revealing are the results of pulmonary function tests in persons with MS who have fewer mobility problems (35% to 75% compared with unaffected individuals).
What can you do? Stop smoking. Get as much regular exercise as possible—use your arms if you cannot use your legs. More good news from researchers—exercises using simple devices can strengthen the respiratory muscles, both inspiratory and expiratory. A clinical bulletin for health professionals, on the NMSS Web site, contains excellent information for clinicians and is available to the public. Show a copy to your primary care providers and ask for referrals to the appropriate specialists.
Loss of Mobility
Almost all persons with MS experience some loss in the ability to walk normally. This is most often due to progressive weakness in muscles that move the legs and feet, although loss of balance and sensory changes often play roles also. There probably aren’t many newly-diagnosed persons with MS who haven’t imagined having to eventually use a wheelchair. They learn that living with MS, however, is about taking one day at a time and accepting one new loss as it comes along. The goal of this section is to discuss some problems related to loss of mobility and give some suggestions to avoid unnecessary complications.
Fractures, Falls, and Equipment Choices
Broken bones generally result from a fall, or in someone with a major disability, by being dropped during transfers or moved incorrectly. Maintaining healthy bones can help prevent the fracture. The most important ways for men and women to maintain healthy bones include weight-bearing exercise and adequate calcium (plus adequate vitamin D for the body to absorb and use calcium from diet and supplements). The nature of MS disability—less walking and very little time in the sun (an important source of vitamin D) because of heat sensitivity—plus use of steroids (which rob the bones of calcium) puts men as well as women at risk for osteoporosis.
What can you do? As far as osteoporosis is concerned, you can make some dietary changes, including consuming more milk, yogurt, and cheese which are excellent sources of calcium and vitamin D. Many vegetables also contain good amounts of calcium. If possible, find a way to get more weight-bearing exercise. If you cannot walk but can stand, stand more often. Discuss this with your doctor. Get a bone density scan as a baseline then follow your doctor’s recommendations for vitamin D and calcium supplementation and medications that help restore bones.
To prevent falls be careful when you move and make sure your caregivers are careful when moving you. Underlying the idea of “being careful†is the need to have the right equipment and to know how to work with the equipment. The range of canes, walkers, wheelchairs, scooters, transfer systems, and devices is enormous and growing. The most important factor is to get professional help in choosing these assistive devices. Meet with your therapists to discuss your current and future needs. As you consider wheelchair options, see whether you qualify for or can afford a standing wheelchair—the benefits are enormous. One person with MS who received a manual standing chair commented, “Now I can stand at my son’s wedding.†Another (who has a power standing chair) continues to be able to teach because he can stand and write on the board. When transferring in and out of your bed and chair become too difficult or too dangerous, consider overhead lift systems that work on tracks instead of more standard hoyer lifts. Some are designed to work with regular bathtubs and showers and avoid expensive renovations.
Be sure to get professional help in using your assistive devices. Make sure you are using your cane correctly. Learn the correct way to transfer in and out of a wheelchair. Learn how to transfer safely from place to place if you can only stand a little to pivot, or if you cannot stand at all. Make sure you have the right cushion in your wheelchair and learn how to take care of it—this will help prevent pressure ulcers.
Pressure Ulcers
Pressure ulcers are one of the many problems people with MS need to know about. Also known as “bed sores,†pressure ulcers result from too much weight for too long on the bony parts of the body. The areas most at risk are heels, sacrum/coccyx, and ischial spines (sitting bones). Others include knees, hips, shoulder blades, and ankles. There is little muscle and not much fat between the skin and the bone in these areas. Pressure causes the capillaries that nourish the skin to be compressed until they no longer function and the skin dies. Irreversible damage can occur in a relatively short time, as little as 30 minutes in some cases. Because early damage occurs under the skin, people sometimes let an ulcer become serious because they don’t know what to look for.
One early sign of a pressure problem is pain and redness (Stage 1 pressure ulcer is defined as a non-blanching red spot). Tissue that is not getting enough blood and oxygen starts to hurt. The body’s normal response to this is to move in order to take the pressure off the area in question. However, pain signals can be interrupted or misdirected, so the person with MS does not move to relieve the pressure. As disability progresses, people with MS also lose some or all ability to move parts of their body on their own.
How do you prevent pressure ulcers? If you spend most of your time sitting or in bed you need to inspect your skin or have a family member or caregiver inspect it, for the signs of early damage. If you find worrisome signs, contact your health care provider, get all pressure off the area, and keep the area dry but do not rub it. Damage starts to occur after 20 to 30 minutes of continuous pressure. Persons with spinal cord injuries, who are paralyzed and have no feeling in the areas below their injury, learn to do regular“pressure reliefs†to take pressure off the areas at risk. Pressure reliefs in a wheelchair are done in several ways: lifting the buttocks using arms, leaning far to the right then to the left, or leaning forward so weight is on the thighs rather than the sitting bones. Persons who can stand should stand for a few minutes, frequently (every 30 minutes).
Get a proper cushion that helps distribute pressure. Get a proper wheelchair (i.e., standing chair, or a chair that helps you tilt back to change the pressure). If you do not move in bed, you may need a specialty mattress designed to help prevent pressure ulcers. These come in many styles, from many manufacturers, and some are available in larger sizes to fit double, queen and king size beds. Some have the pressure relieving technology only on one side.
Conclusion
Many people have researched how persons with MS (and other chronic diseases) adapt to disease progression and increasing disability. MS presents difficult challenges because of the age at which it develops and its unpredictability. Books and articles about adapting or adjusting or accepting disability, whether written by persons with MS or by scholars, all describe in one way or another a process of coming to grips with what is happening. Using a cane eventually makes such good sense and the wheelchair or scooter make life so much easier that the original fear of “looking disabled†is replaced by doing what is necessary to maintain as much independence as possible. Quality of life studies show that persons with chronic diseases, including MS, continually redefine their quality of life.
I hope this article gives you and your loved ones ideas as well as reassurance and encouragement about how to live well in the face of progressive MS.
References
Altintas, A., Demir, T., Ikitimur, H., & Yildirim, N. (2007). Pulmonary function in multiple sclerosis without any respiratory complaints. Clinical Neurology and Neurosurgery, 109, 242-246.
Bombardier, C., Wadhwani, R., & LaRotonda, C. (2005). Health promotion in people with multiple sclerosis. Physical Medicine and Rehabilitation Clinics of North America, 16, 557-570.
DeStefano, F., Verstraeten, T., Jackson, L., et al (2003). Vaccinations and risk of central nervous system demyelinating diseases in adults. Archives of Neurology, 60, 504-509.
Finlayson, M., & Van Denend, T. (2003). Experiencing the loss of mobility: Perspectives of older adults with MS. Disability and Rehabilitation, 25(20), 1168-1180.
Hernan, M., Jick, S., Logroscino, G., Olek, et al (2005). Cigarette smoking and the progression of multiple sclerosis. Brain, 128(1461-1465).
Hernan, M., Olek, M., & Ascherio, A. (2001). Cigarette smoking and incidence of multiple sclerosis. American Journal of Epidemiology, 154(1), 69-74.
Koch, M., Mostert, J., Heersema, D., & DeKeyser, J. (2007). Progression in multiple sclerosis: Further evidence of an age dependant process. Journal of the Neurological Sciences, 255, 35-41.
Multiple Sclerosis Council for Clinical Practice Guidelines (2001). Immunizations and Multiple Sclerosis: Evidence-Based management Strategies for Immunizations in Multiple Sclerosis. PVA. Available from National MS Society Web site: www.nationalmssociety.org.
Fry, D. (2007). Pulmonary function and rehabilitation in multiple sclerosis. (to be completed)
Morrison, E. Primary Care in MS, Clinical Bulletin, Information for Health
Professionals, NMSS. HOW TO QUIT (adapted from You Can Quit Smoking. Consumer Guide, June 2000. U.S. Public Health Service. http://www.surgeongeneral.gov/ tobacco/quits.htm).