July 1, 2003
Phyllis Kramer; David Haight; Marian Barker, Frank James; et al
Real Living with Multiple Sclerosis
The MS Support Group put this information together to answer frequently asked questions. We hope that you gain a better understanding of our disease and of us. Through education, support, and communication, we all benefit and grow.
What is MS?
It's a nerve disease. The myelin sheath is destroyed on certain nerves, similar to the plastic coating around electrical wires. The body is fighting itself and nobody has figured out why yet. It's not lethal.
Why are you in a wheelchair?
So I won't fall down. Because MS affects my legs, I'm in a wheelchair because I can't walk.
What about brain function and memory?
I'm still smart. Other people so often make decisions for me, but how do they know what I want? If you want to know, ask me. I may be limited physically, but I can make up my mind.
I still need choices. Don't treat me like a child. Don't tell me what I have to do.
My memory can fluctuate, and I may forget some things, just like you. Having a routine I can count on helps me stay sharp.
How is communication different with MS?
I've learned how to communicate in a different way. You have to slow down to hear me and let me speak my mind. Ideas are often on the tip of my tongue and are hard to get out. Sometimes I have to push the words out; sometimes I say the words, but you hear silence. And sometimes I even sing to get the words out! I need you to speak slowly and directly when talking with me. You don't need to talk down to me; I still understand you but at a slower processing speed.
How much assistance do I need with activities of daily living?
Ask me. It changes day to day. Heat weakens me. Feeling fatigued is different from feeling sleepy. I will help you as much as I can; please don't assume I'm playing games when my abilities fluctuate. If I seem weaker, help me look for causes. Is my room hot? Am I getting enough sleep? Am I stressed? Am I depressed?
Why have a support group?
I can be with friends who really understand. Meeting weekly is important
for developing relationships. Respect and confidentiality are cornerstones
for the support group. We share experiences and discuss the most recent
research, clinical trials, and medications. We read articles, autobiographies
of people with MS, and watch related movies. (Sometimes we just watch entertaining
movies.) We own our disease and we share our support.
Copyright © 2003, Real Living with Multiple Sclerosis