Can't believe I have it

[hopingforcure]

Such great advice from all of you. I think the more we know about als the less we know. I think anything is possible, or not possible. All kind of different progressions and symptoms. Like all said before me, take it as it comes, try not to buy trouble. Enjoy each day, but listen to your body, rest when you need, have fun when you need, but most of all know that we are all in this together, and we will fight this together.

 

[Big Mike]

Progression can be quite slow

One of the biggest misconceptions about ALS I have discovered, Hal, is that it progresses rapidly for everyone. That's just not true. Some people can live a long time with this disease. For instance, I was diagnosed only 9 months ago, but cross-checking with my past medical reports, I can confidently say that I had emerging symptoms going back to 2003. Others here have reported symptoms going back a few years or more before their diagnosed as well. Others progress slowly even if their symptoms appeared a year before their diagnosed.

As far as some symptoms coming and going to a certain extent, you have lots of neurons, which can pick up the slack of dying ones, which can result in fluctuating strength. It happens to me--that's the reinnervation process taking place.

So here's hoping you have a slow progression, but remember, don't work your muscles too hard--keep them strong but don't overtax them.

 

[halfin]

Thanks again for the helpful comments. I do hear what people are saying about conserving strength, but it's hard to accept because it's the opposite of what I've always understood, that exercise makes you stronger.

When I was a boy, in the 50s and 60s, you used to sometimes hear people say that exercise was bad for you. It was thought that the heart had only a certain number of beats in it. When they were used up, you would die. And exercise uses up your heartbeats faster, so it was bad. It wasn't until the 70s when jogging and aerobics became popular that this old belief seemed to finally die.

Now with ALS it's almost like that idea has come back, your muscles have only a certain number of contractions left so you better not use them up. It seems crazy but I guess the problem is that with the disease, the cells and tissues don't heal and recover the way they would do in a healthy body.

I guess I'm pretty close to deciding not to do my big race in December. My wife says that if I don't run it, she'll walk it and do it as a fundraiser for ALS. That's a really nice idea but it means I go from being a runner to being the symbol of a fatal disease that people are raising money for. It's a hard change in how I think of myself and how I am seen.

I still cling to the hope that maybe the diagnosis is mistaken and things will go back to how they were. We'll see I guess.

 

[BethU]

Hal ... what I was told by my neuro is that normally, when we exercise and stress the muscles, they rebound by growing stronger. With ALS, there is no rebound. When you stress an ALS-affected muscle, that stressed and weakened state becomes its new "normal."

However ... she said you can still exercise and strengthen the parts of the body that are not yet affected by ALS. Of course, in running, you are not building up specific muscle groups, you are building overall stamina. In my case, I continued with Pilates, using no resistance for upper body exercises, just range of motion, but continuing to use springs for resistance for leg work. Then my legs started to be affected, so it was all range of motion and stretching. Then I found even that to be too much exertion ... I was exhausted after a session ... so I finally quit.

Frankly ... I don't think anybody knows as much about ALS as we pretend to, including neuros. As a serious runner, you know your body best. I would use common sense ... I'm hoping they are wrong about your diagnosed too ... and not try to push yourself right now until you are more certain of the diagnosed. Don't take chances. They may be right. If they're wrong, you will be able to get back to your current fitness level.

ALS itself is a marathon, not a sprint.

 

[halfin]

"ALS itself is a marathon, not a sprint."

I like that analogy Beth! So maybe I can still think of myself as a marathoner.

 

[Zaphoon]

I've been told I have PLS by 2 doctors, an almost retraction by one of them when I got more movement back in one shoulder (frozen shoulder syndrome, too!).

One doc told me I didn't look sick. Well, at the onset of something like ALS, PLS or MS, you may look and feel pretty good. In your case, you do (if the diagnosis is correct). I hope you remain looking and feeling good for a long time.

With PLS, I've had months on end where I've felt bad each day. I don't know if its because I'm use to it or if things have eased up but I've been "feeling" good even though I still have spasticity and cramping.

I guess I can say I've adapted. There you go! Word for the day - adaptation!

Zaphoon