In keeping with our theme at the 2001 annual conference, I thought it might be helpful to consider ways we can go forward, taking charge of our lifestyle changes and helping ease some of the transitions we may be experiencing. In the book Managing Post-Polio edited by Lauro Halstead, Chapter 6 covers a lot about managing changes. Here is a brief summary of information contained in the chapter, along with a few additions of my own.

The first step is to be knowledgeable about post-polio syndrome. There are many good resources for information. In our last newsletter we mentioned several books, some of which are available at our library through Alpha One. Also, Alpha One has several articles about post-polio that they can send to you. Another resource is the Internet, with the GINI website offering some of the best, up-to-date information on PPS www.post-polio.org. Of equal importance are support groups that provide opportunities to talk directly with others experiencing similar situations, attend conferences and regional meetings, and receive periodic newsletters on what is happening in the area.

Secondly, it is important to work with a good health professional team, keeping them and you informed of health changes. At a previous conference, Dr. Altaf Ahmed urged us to have a good medical evaluation, and not assume all health changes are related to post-polio syndrome-there may be other problems which need attention, also. If you are still looking for a health professional knowledgeable about PPS, you may wish to contact Alpha One for the PPS list of health professionals in Maine that have been recommended by one or more of our members. A health professional may work with you in setting up an exercise program to help preserve muscles and for overall health.

Thirdly, think about all of your daily activities. It may be useful to put them on a list. You could be surprised just how much you do use your muscles on a daily basis! If you find yourself exhausted by mid-day, consider prioritizing your activities and eliminating or postponing some. To some of us, weight gain seems to increase as our age increases! While keeping track of the importance of nutrition, we should try to avoid becoming overweight, which does tax our energy and endurance.

Fourthly, in addition to conserving energy, modifying activities and controlling weight, there are other treatments for fatigue, muscle pain and growing weakness that may be helpful to you. For instance, techniques to relax and regular rest periods are examples for relief of fatigue. Listening to soothing music or having a massage may work wonders for some of us.

The deep, aching and diffuse pain of PPS may not respond readily to pain medication, but may be eased by warm water baths and easing up on muscle strain. I found that adding wooden planks under my chair made it higher so that it took less strain to raise myself up. For those who read a lot, try resting the book on a pillow or tray so that your arms and hands do not get fatigued from holding the book.

You may wish to consider adding new mobility aids, such as adding a brace, going from a cane to a walker, or to a wheelchair to preserve your muscles. I now use a mobile-type walker about half the time and find it helpful-especially the built-in seat! To the extent possible, your health professionals may advise stretching and strengthening muscles through exercise and support through use of bracing and other assistive devices.

So, as we look forward, we can take pride in our previous accomplishments, and more importantly, take charge of our future through knowledge, participation, modification, and perseverance.                                                     INDEX