InsideMS; Summer 2002; Vol. 20, Issue 3
More exercise junkies
Unlike Nancy Chamberlayne [“Exercise Junkie”, Spring 2002], I have never been particularly athletic, but my neurologist suggested I walk a mile every day. I modified that to three days a week. When I developed osteoporosis, I began weightlifting, which I’m also doing three days a week—and I now have muscles! I also do tai chi and yoga several days a week to help with balance and flexibility. I second Nancy’s approach for anyone who is able.
Kathleen J. Bean, New Hampshire
In “An MS Expert Looks at Aging” [Spring 2002], Dr. Stanley van den Noort didn’t distinguish between elderly people who still live at home, independently, and those who must now live in an assisted living facility or nursing home. What about quality of life and the desperate need for adequate assistance and accommodations?
Mrs. Rose Donegan, New York
Are we one, or are we many?
As I read the letter from Roberta Stein [“Readers Write”, Spring 2002] all I could think is that she must’ve forgotten how she felt 20 years ago. I was diagnosed with MS three-and-a-half years ago at 25 years old! I was scared to death, wondering if I would be able to have children or if I would be able to continue my career as a police officer. I know a lot more about MS now than I did then. I have a 14-month-old daughter, my 15-year-old stepson lives with us, and I am the chief of police in my town. I don’t believe that anyone is trying to be patronizing to anyone whose symptoms are more progressive, I just think that we are afraid of not being able to work or care for our families.
Jennifer Reich, via e-mail
I am 33 years old and have been diagnosed for just over a year. My symptoms have required that I retire, and I am now collecting disability. When I was first diagnosed I found it difficult to find resources that I could identify with and help me cope. MS was shown in a very positive light. Videos that I got through my local chapter and articles I read were about how little MS had affected people. This left me feeling very alone. I couldn’t find stories that addressed the issues I faced.
MS is not the end of the world. But MS has many faces and they all need to be acknowledged.
Michael Wilson, via e-mail
As a newly diagnosed, 30-year-old woman, I need a support group with other newly diagnosed patients ... especially people my own age. I don’t think that makes me “narrow-minded”; I think that makes me a newly diagnosed, 30-year-old woman who is trying to find people her own age who are dealing with the effects of MS.
Christine Turner, via e-mail
Those of us with primary progressive MS are the 10%–12% of the MS population that nobody talks about. I have had to educate physical therapists, medical doctors, and government agencies about the different kinds of MS and their prognoses.
I have to use a wheelchair and couldn’t walk—not one step—if my life depended on it. I am basically homebound, and yet—according to the media—I’m supposed to climb mountains and never give up and blah, blah, blah …. We need the real story told, and we need a cure.
Christina Rouse, New York
I am a co-support leader of a Newly Diagnosed/Minimally Affected group. We discuss issues those with a more progressive and visible MS do not have. How to answer those who tell us “but you look so good” even though we may be so tired we can hardly lift our arm. How to explain the afternoon fatigue that stops us in our tracks, and how after resting for an hour, we can get up and get going again.
Our monthly meetings are important to us and we would never ask a member to leave if she or he became more disabled. For now, we face one day at a time and hope that the future will be brighter for us.
Charlene Press, Ohio
© 2002 The National Multiple Sclerosis Society