I posted this thread the other day:I felt like dirt. Some of you may have seen it.
I want to make this girl happy, so its time I got serious about learning something about MS. I’ve been learning to help with PT and after she got overheated once, I found and purchased a hat and vest that does evaporative cooling (I once worked in a factory that did vulcanizing, I just had to call old friends).
I’m really interested in anecdotal/personal experience type advice, there’s enough clinical stuff to be found.
My Mum has had MS since before I was born (and I’m now mid-twenties). Although she has never had to use a wheelchair full-time she does need one for moving more than a hundred yards.
What do you want to know?
There are lots of sites describing MS out there, including various MS Societies throughout the world. Check them out…they usually have sections for significant others.
Basically the nerves in the brain and spinal column have a protective coating (usually portrayed like sausage casings) that allow the electical nerve impulses to be transmitted. MS will trigger attacks against the coating (myelin) that (temporarily or permanently) damage it and prevent the impulses from being transmitted. The attacks can happen any time and can’t be predicted what nerves are affected. The most common seem to be those affecting sight, walking and pain. When an attack happens fatigue really sets in.
My wife was diagnosed in November of 2003 and we are still in the stages of figuring out what is going on and how to deal with it. She was affected by a loss of taste for a couple months, but it returned. She currently has some spasticity in her legs and is having a terrible time with neuropathic pain. Her left arm and face are in constant pain but have no treatable source for the pain. We’re still trying to get it under control. This next section should probably be relocated to your thread linked above…
Our big problem is not knowing what will happen next and the possible outlook. At this point, she prefers to continue living life as we had before with the exception of going ahead and doing things now when we might have put them off 'til later.
Case in point:we are going to England to visit relatives in May. She would like to stay in London for a couple of nights with our 3yo twins. The costs are outrageous, but because she is still mobile and in relatively good spirits we are going to proceed anyway so that she has the chance to enjoy the experience now. We just don’t know how her condition will change in the future.
As far as domesticity, things continue the way they always have. I still kick her out of the kitchen ('cause it’s mine, dammit!) and she still insists on doing all the laundry ('cause I don’t do it right!). I do have to ask her how she’s doing when we are on outings, as she will try to do more than her body will let her, so I have to be concious of her abilities (or limitations). She needs to conitnue moving and make sure she doesn’t feel like a burden or (I suspect) a level of depression will move in. She gets mad if I keep trying to help when she doesn’t ask for it.