Multiple Sclerosis

what is it?

Multiple sclerosis is an auto-immune disease of the central nervous system. Every once in a while your immune system decides it would be a good thing to chomp on myelin, which lines your nerves much the same way insulation lines electric wires. During the chomping (inflammation), the transmission of information from your brain to your { muscles | eyes | bladder | fill in the blank } is disrupted, causing { fatigue | tingling | numbness | painful sensations | blurred or double vision | muscle weakness | impaired balance | spasticity | tremor | cognitive changes | speech and swallowing problems | fill in the blank }. After the inflammation, the myelin may more or less repair itself, or there may be permanent damage.

MS comes in several flavors:

why do i care?

I was diagnosed with relapsing-remitting ms in 1994. I enjoy fatigue, vertigo, spasticity and occasional paralysis.

what do i do about it?

Read, read, read, read. Hunt through the internet for information. cope. ignore it…sometimes. always hold on to the hand rail when going down the stairs.

equipment:

I know it’s hard for many people to use mobility equipment. I was terribly embarrassed when I first started using a cane - it just wasn’t practical to hold onto walls to walk anymore! Using a cane transported me back to 2nd grade when I got my first pair of glasses - I was so nervous about what everyone else would think that I got to class very early and hid my head inside my desk. Once I’d gotten semi-comfortable with the cane, something more became necessary, and I got to go through the whole process again with crutches, and then again with a wheelchair.

Although each of these changes was difficult, the increased freedom I got more than made up for it. When the choice is between sitting at home without a wheelchair or going out to work, to be with friends, to do the things I want to do with a wheelchair, there’s no contest!

For more on wheelchairs in particular, see what little i know about wheelchairs .

travel:

There are a lot of resources on the net about vacations/cruises/leisure travel for the disabled, but very little about business travel. I’d be interested in any information you might have - drop me an email. I’ve written a short article on the subject for About.com’s Business Travel forum.

I get cranky when I see cars without a permit parked in handicapped spaces, so I carry around a bunch of signs in my glove compartment and put them on the windshields of offending cars.

Anyone who flies and is disabled needs to know about the Air Carrier Access Act .

coping:

It’s kind of presumptuous of me to tell any one else how to cope with a life altering chronic illness, but what the heck. When I was first diagnosed, I coped the same way I coped with everything else: by distancing myself from the problem while simultaneously learning everything I possibly could about it. I bought books, went to the library, did MedLine searches, and of course, spent hours and hours of time researching on the internet. I also lurked in the alt.support.mult-sclerosis newsgroup, which I found very comforting, because obviously I wasn’t the only one with my problems and symptoms.

As time has gone by, I’ve discovered, of course, that I can’t just ignore it. I’ve made a couple of decisions on how to live my life with MS. I won’t abandon my entire life in order to “beat” MS. That means I don’t go chasing what I consider quack treatments, and while I’ve made a number of modifications to what I eat, I won’t be a slave to supplements and highly restrictive diets. When MS starts to interfere with things I want to do, I look for a way to do it anyway, whether that means going to a concert in a wheelchair, or making time to nap on the weekends. I recognise that fatigue is a real, significant factor in MS, and I’ve educated (and continue to educate) my family about that, since fatigue isn’t something they can see.

a request:

Please do not write to me about bee vemon, faith healing, aspartame, or whatever your hobby horse happens to be. The likelihood that I’ve already investigated it and made my own decision on the matter is very high, and I appreciate your respecting my intelligence. Thank you.