Post-Polio Health (ISSN 1066-5331)
Vol. 14, No. 2, Spring 1998
Marny Eulberg, MD, Saint Anthony's Hospital, Denver, Colorado
Marny Eulberg, MD is a polio survivor, a family practice physician educator, and a post-polio specialist, who has advised polio survivors since 1985.
Wellness is being the best that you can be - physically, mentally, emotionally and spiritually. The steps to attaining wellness may sometimes seem overwhelming, and almost impossible to achieve. We may be hesitant to begin, but we must remember that we do not have to achieve perfection. This does not have to be an all or nothing situation. It is worthwhile and useful to work towards wellness, just as we may try to work towards perfection.
Most of the concepts of wellness are the same for all people whether they have a disability or are nondisabled. We are all ordinary, everyday people, and I would like to think that we are ordinary, everyday people first, and polio survivors second. That certainly does not negate the impact polio has had on your lives.
When you consult with a primary care physician about a personal wellness program, it is important that you both have the same goals. You need to clearly define your values and your definition of wellness. If your physician regularly runs in marathons, his or her ideas about wellness may be different than your definition and may not fit with your goals. A wellness program should be customized; one size does not fit all.
Look at what are you willing and ready to change, and equally important. what you are not willing to change. Remember that any and every step towards a healthier life is progress. Do not forget to congratulate yourself for those areas in which you have already made changes.
Your primary care physician can give you advice about several aspects of wellness. Look at the items in "Staying Well: What I Can Do" (below). Place a star beside items which you don't feel apply to you or you are already doing. Check the boxes next to items about which you would like more information and discuss them with your primary care physician.
Exercise is important for maintaining strength, to prevent osteoporosis, to burn calories, and to decrease insulin resistance. Decreasing insulin resistance is particularly important if you have a family history of diabetes, are overweight or have other risk factors for adult onset diabetes. Exercising and maintaining ideal body weight can prevent or delay the onset of Type 2 diabetes.
Exercise is definitely an area that should require input from a polio specialist, so you do not overuse or overstress extremities that have already been weakened by polio. However, you may have unaffected or stronger muscles that can be safely used for exercise. (Read "Non-Fatiguing General Conditioning Exercise Program: The 20% Rule.")
Not paying attention to safety issues can cause more suffering than many diseases. Issues to consider are: Do you always use a seat belt? Do You have working smoke detectors in your home? If there is a gun in the home, is it stored safely? Are there bars and other safety devices in your bathroom? (Or, are you using a towel bar that is just attached to the wallboard?) Are there handrails on all the stairs in your home?
Preventive care includes age and sex specific considerations, such as testing for colorectal cancer if you are age 50 or older. For men, it is advisable to have prostate tests and possibly the blood test PSA (prostate specific antigen) done. Women are advised to have breast exams, mammograms, pelvic exams, Pap smears and discussion of the pros and cons of hormone renjacement therapy. Also, there are a number of new vaccines - chicken pox, Hepatitis B and Hepatitis A. If you never had chicken Pox (varicella), and you are going to be around children who might be exposed, you might consider getting the chicken pox vaccine. Chicken pox in adults can be a serious, even fatal, illness. If you are traveling outside the United States, there may be certain vaccines that are recommended to decrease the likelihood that you will get sick.
Osteoporosis is a common problem that may affect all people age 50 and older. Many Americans will experience osteoporosis fracture – usually of the wrist, spine (vertebrae) or hip. A way to understand the magnitude of the problem is this: An average Caucasian 50-year-old woman has an estimated 16% to 54% risk of suffering a broken bone during her remaining lifetime. The estimated risk for a Caucasian 50-year-old male is 6%. At age 65, one fourth of the Caucasian females in the United States will have had one or more vertebral fractures. Many of these will go undetected unless an x-ray is taken.
Up to 20% of those who suffer a hip fracture will die within one year. Of equal concern is that many persons with a fractured hip never regain their pre-fracture level of activity and independence. Almost 20% of the general population with a hip fracture will require nursing home care and will not be able to return to living independently.
Osteoporosis is an important issue for polio survivors because many of us are either age 50 or older. The polio-affected areas have less bone mass and weaker bones because of the lack of normal weight bearing. Many of us will fall more often than persons with normal neuromuscular function. If we break our "good" hip or fracture an arm that we depend on to assist in walking with canes, crutches, or to propel a wheelchair, or for transferring, it makes a tremendous impact on our lives and our independence.
Bone loss normally begins at age 30 or 35. After that age, you cannot increase bone mass. If you break a bone, you are able to remodel and generally heal that bone, but you can't add density.
If the usual bone loss that would naturally occur has not been slowed, statistics show that 90% of women and 50% of men at age 80 will have osteoporosis.
Bone loss can be prevented or slowed. Calcium in the diet is important. Most Americans get about 700 or 800 milligrams (mgm) of calcium per day (recommended is 1,000 to 1,500 mgm). To increase calcium in your diet, include at least four servings of dairy products per day. Adequate amounts of Vitamin D (between 400 and 800 units per day) are also needed. One glass of milk is fortified with 100 units of Vitamin D. If you drank four 8-ounce glasses of milk, you'd get the recommended daily amounts of calcium and Vitamin D. (You can get enough Vitamin D by a daily 15-minute exposure to sunlight, which is possible even in wintertime when you are fully clothed because your hands or face are exposed.) In one study, calcium and Vitamin D were given to a group of nursing home patients and the fracture rate was decreased by 40%, compared to the control group.
Hormone replacement for women (estrogen with or without progesterone) and sometimes testosterone replacement for men can slow bone loss, preserve bone strength, and decrease fractures by approximately 50%. Estrogen alone can be used for women who have had a hysterectomy. Estrogen also has some other advantages; it has been shown to cut coronary artery disease by approximately one-half and it may decrease the risk of Alzheimer's disease. There may be a slight increased risk of breast cancer in women who take estrogen for more than ten years; studies show mixed findings about whether estrogen replacement does increase breast cancer risk or not. Estrogen can increase bone mass even if it is begun after age 65. For it to be most effective, it must be taken for many years, perhaps a lifetime. A new drug, raloxifene (Evista), can be used in women who have had breast or uterine cancer or those at high risk for these forms of cancer.
Two drugs released in the last couple of years to prevent and treat osteoporosis are calcitonin (Miacalcin, Calcimar, etc.) and alendronate (Fosamax). It is interesting that these new drugs have only been approved by the FDA for treatment of osteoporosis in women, but not officially approved for use in men.
Calcitonin is administered by injection or as a nasal spray. One should take calcium with calcitonin. It increases bone density and prevents further mineral loss for at least one or two years, but the studies to date have not shown a decrease in fractures.
Alendronate (Fosamax) is in a class of drugs called biphosphonates and is new; another called etidronate (Didronel) has been available for at least five years. Fosamax is taken orally every day; Didronel is taken orally for seven days once every three months. The biphosphonates have been shown to decrease fractures by 50% and are recommended for women who cannot take estrogen. Supplemental calcium should be taken with the biphosphonates. All of the biphosphonates can cause gastrointestinal distress and therefore should be taken upon arising with tap water, before food or beverages. One should not eat before and should remain upright for 30 minutes after taking these medicines.
Other drugs are being used such as parathyroid and various growth factors, but these are still experimental and should be taken only after consultation with a metabolic bone specialist.
Testing is available for osteoporosis. It is not usually recommended for the general public, but you may want to discuss your particular situation with your primary care physician or your polio specialist. The testing that is generally done is a special x-ray called dual photon energy absorption. Another method that measures the bone density in one's heel bone also has been approved. I would recommend caution about the interpretation of the heel bone density test in a polio survivor who has weakness around one or both feet or ankles. If you have one polio-weakened leg and one apparently unaffected leg, I would expect the scan of the polio-affected heel to show fairly significant osteoporosis and the unaffected heel to show little or no osteoporosis or even super good bone.
Armed with all this information, what are you going to do to start a journey toward being a healthier person?
To receive more information about osteoporosis, contact the National Osteoporosis Foundation, 1150 17th Street NW, Suite 500, Washington, DC (District of Columbia) 20036-4603, 202-223-2226.
Staying Well: What I Can Do
- Do not use any form of tobacco.
- Eat a healthy diet.
- Exercise regularly – must be individualized and may need consultation with a post-polio knowledgeable health professional.
- Drink alcohol in moderation, if at all.
- Do not use illegal drugs.
- Practice safe sex.
- Use seat belts (and car seats for children) when riding in a car or truck.
- See your doctor regularly for preventive care:
- measurement of height, weight, cholesterol, blood pressure
- other tests based on family history and certain risk factors such as screening for colorectal cancer, prostate cancer, breast cancer, etc.
- immunizations for adults – diptheria/tetanus once every 10 years
- evaluation of need for vaccines for special circumstances, such as travel, and for persons with respiratory conditions, and/or age 65 or over
- pneumonia vaccine – one shot good for at least 6 to 10 years.
- yearly flu vaccine
For your information, the following benefits were added by Medicare in 1998 ...
For women ...
- Yearly mammograms: Started January 1, 1998 (No Part B deductible)
- Pap smear, including pelvic and breast examination: Started January 1, 1998 (No Part B deductible)
For everyone ...
- Colorectal cancer screening: Started January 1, 1998
- Bone mass measurement: Starts July 1, 1998
- Flu & pneumococcal pneumonia shots: Medicare pays 100 percent.