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Disability? What Disability?


Health & Wellness  (tags: rare diseases, health, lack of research, life, attitude, Body-Mind-Spirit, children, family, knowledge, depression, disease, drugs, healthcare, illness, medicine, research, study, women, humans, interesting )

Barb
- 2585 days ago - chabad.org
Having to explain to others made me wonder why no one knew about the rarer side of the disease. So I investigated and found that there are so few patients with the rarer form, that there is no research being done. So, like MS many years ago, those of us..



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Comments

Lisa Swift (79)
Saturday September 22, 2007, 10:36 pm
Noted!

I live with MS and a plethora of related conditions, some of which are considered MS staples, and others which are rare. I use a power chair whenever I have to go more than about 25 yards, a walker to get to someone's car (Mo one has a handicappedd-modified vehicle.), a cane to balance with on my patio, and in the house, I mostly walk unaided, with the help of walls, furniture, etc.

Like the author of this article, I went undiagnosed for many years. I was actually relieved when I got my diagnosis! I never went through the grieving process that many newly-diagnosed people go through. I immediately looked up everything the LA County Library had on MS. I took out what I could, and copied what I couldn't. I joined the major MS organizations. I became really proactive in my medical decisions. I keep my doctors on their toes about the best therapies for MS and colateral conditions.

During my undiagnosed years, I made adaptations in my everyday life as a matter of course. If I couldn't do something, I found a way to do it in which I could succeddfully complete a task. For instance, when I couldn't tie my shoes, I switched to velcro, I recently discovered that I can tie round laces, and thus expanded my shoe choices. I don't try to stand and cut vegetables, I sit on my walker, etc.

On my good days, you would never know that I live with MS. This leaves yme open to nasty comments when parking in a handicapped space. People actually think I'm misusing my placard! LOL! I have to keep my sense of humor sharp, because if I couldn't laugh at my condition, I'd have to either cry or rage. Most people don't understand this, and when informed of my condtion become concerned, and try to do things for me tat I have no trouble doing myself. I appreciate their concern, but "Mother, please! I'd rather do it myself!" (Reference to old commercial--Mom died in 1971.)

So watch out for me in my new bright red power chair if you come to my town--I haven't gotten used to it yet. LOL!
 

Holly Troubetzkoy (167)
Sunday September 23, 2007, 1:00 pm
Jerry Farris has learned that humor can help deal with pain and problems and an almost unknown condition. She has shown that it is not about whether you have a disability or not but what you try to do inspite of that fact. Thank you Barb Pl for thea article
 

Past Member (0)
Sunday September 23, 2007, 7:47 pm
excellent article...noted
 

Teresa del Castillo (1519)
Saturday October 20, 2007, 10:09 am
noted
 
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