Re: surprised by progression

[Guest guest]

Jackie,

Why is it that when we know our disease is both progressive and

degenerative, we're still a bit surprised when things get worse?

I look at neuromuscular diseases as being on a giant continuum with

ALS at the extreme end. There is nothing subtle about that disease

as it progresses. It upsets my husband when my symptoms worsen - he

would like to think I could just plateau where I am now for the rest

of my life. I also can't believe the number of people who ask me if

my legs are better.

[Guest guest]

karen,

i know what you mean. I always have people ask me if i am weaker. weaker from

when? 20 years ago, of course. yesterday, who know's!

ALS of course is so rapid and so inhumane. I really feel like it might be the

worst disease out there because the mind is so crisp.

I guess it is a surprise when we get weaker because as soon as you adjust to

doing things differently, a new weakness appears and readjustment is needed

again. It used to really depress me and bum me out, but now i just go with the

flow (most of the time, i still get angry at my body, but that is my coping

mechanism) I think the adrenaline in the anger pushes me to do whatever it is i

am trying to do!

jackie

[Guest guest]

I know! My husband said to me with such shock in his voice the other

day, " Wow. Your right calf is so much smaller than your left. " I

said. " Um. Yeah. That is what I have been trying to tell you. I have

no muscle left in my right calf anymore. " But really, I kind of can't

believe it myself. It just seems to get smaller and smaller while I

limp more and more just trying to drag that right leg along with me.

But when you think of something as terrible as ALS, it puts our

disease in perspective. From the elbows down and the knees down

doesn't seem so bad sometimes. Many have it worse.

[Guest guest]

- knowing that so many have it much worse than me is what keeps me going

as my nerves slowly degenerate.  I just wish someone could convince my husband

that it cannot be fixed.

Lynda