questions, quadbliss?

[boxer22]

I know you guys are sick of me asking so many questions, but for those who can answer some more that would be great. Some things about als confuse me. I mean for instance it effects your muscles very badly but how come it doesnt effect one of the most important, your heart? Does anyone know? Also, for those who vent how long was the time from when you got diagnosed until you had to go on a vent? Also how do you communicate with your loved ones, like when you need something? And also about your facitlations, can you or could you make yourself have one by tighten up your muscle? I can make myself have one everytime i flex or tighten up, is that connected to als in anyway or is it not important? I know there are not any easy answers but maybe someone can shed a little light. Thanks so much!
Ashley

 

[Jamiet]

Ashley,

ALS only affects voluntary motor movement muscles. The heart doesn't beat volunarily, it's like your other organs and runs without you having to think about it. I think that's why they say it affects the motor neurons, as all your movement is "motor".

 

[joelc]

Ashley, ALS only affects the voluntary muscles so organs like your heart are not affected. This is just one of the mysteries. As far as when a vent is needed, I think you might be starting to find out that this is not a question anyone can answer as ALS affects each person so differently. Some are not needing a vent after 10 years, or more and others need it within 6 months. Once on a vent, in most cases, you can still talk if you were before getting a vent. Otherwise, there are some really good computer programs and devices that can take care of this. A quick search can pull up many useful electronic helps. Your ALS center and speech therapist will have some suggestions on this.
I cannot make myself have a fasciculation by stretching, flexing or tightening up a muscle - this activity produces an immediate Charlie Horse and hurts like crazy.

Everyone is so different on how, and how fast, ALS affects them. Mine started in my hands, mildly into my legs and has affected my breathing significantly. I was expecting the respiratory problem to be one of the later events....not so.

Good luck!

 

[quadbliss]

Hi boxer22,

Sorry I have been silent on this thread, but it looks like everyone did a great job in answering your questions (as usual). I have not been able to get much computer time in lately.

Mike