Odd morbid question

[Smak]

Let me first apologize for this question, but I am truly curious. I have read that people with ALS eventually loose control of all their muscles, however they will remain with the ability to blink. Is this true?

Can one in this position blink on command, or is it involuntary?
-Sorry
Adam

 

[joelc]

Yes, in the majority of cases the ability to blink remains. I cannot think of one report I have come across where this is not true.

 

[quadbliss]

Hi Adam,

I have lost the ability to execute a complete blink. My eyes don't close all the way. This causes dry eyes, and extra thick tears which affect my vision.

Mike

 

[Smak]

Blinking

Thanks for the response. I feel compelled to explain my odd question. I hope I can present this in a way that shows compassion for those people suffering, but allows me some freedom to express what I have on my mind.

Last month I started having twitching, muscle cramps, muscle pains all over my body, lots of anxiety and other not so fun things. The first thing I did was goggle my symptoms, and guess what popped up many times? I went to a neuro thinking it might be a MND, ALS specifically. The neuro told me after an office examination that he is confident I don't have any MND. He said to put my mind at ease he would schedule me for a EMG in December, and not to worry about the muscle pain as it is not a typical symptom of a MND. I am starting to believe him since the twitching has stopped and my muscle pain is getting better. I haven't noticed any muscle loss, but I still feel sore (could be the anxiety). Lets hope thats all.

The reason for my question is that this has really scared the crap out of me. The fact there is no treatment is bad enough, but it seems like once you lose your body, you are just suppose to let go. I wonder if there was some way that people could more easily communicate with the rest of the world once they lost most of their motor skills? I wonder if they would live longer and with a higher quality of life? I know there is much more to this question then what I ask, but I am still curious what can be done. I am very ignorant of this disease and I have read many times that everyones journey is different.

I have a career and education in electronics and because of this last month everything that I have done seems silly and a complete waste of time. I have spent the last few days trying to find out what has been done, and what is being done along the question I pose. I really hope everything that can be done is being done, but after what little research I have done I just don't believe it to be true.

Any thoughts?

-Adam

 

[CindyM]

Hi Adam- sorry for your health scare and hope it proves to be something treatable. You are right that just being faced with the possibility of MND often makes people re-think their priorities. And you are right that not enough is being done to research what causes it and how to cure it. The ALS community can always use another advocate. Regards, Cindy

 

[brooksea]

Adam,

Hopefully your neuro is right and you are good to go!

I also had a career in electronics. Most of what I was involved with was for the military or medical industry. Too bad there isn't an R&D company totally devoted to finding ways to make life better for those that are unable to communicate like the rest of us. But that would take funding and it isn't as glamorous as a heads-up display or a smart bomb.

Assistive devices have have come a long way, but as you can see until someone walks in a PALS shoes, people have no idea what it could be like without a way to communicate. (I do think I heard about a university study using thought to communicate with a computer...don't know the details.)

I applaud you for thinking along those lines.

Hey, if you are inspired, that is fantastic. Everything happens for a reason, or that's what I keep telling myself.;-)

 

[quadbliss]

I left out a critical point in my post above. I have been diagnosed for over 9 years. People don't usually experience eye problems until the very late stages of the disease.

Mike

 

[ZenArcher]

I have an electronics background also. I was a nuclear trained electronics technician in the navy. After getting out I worked in electronics field for quite some time afterwards. As far as alternative means of communication there are a couple of systems out there that track the eye movements which have been discussed on other postings on this site. The only one I can think of at the moment is the ERICA system. You never know perhaps they're looking for some assistance.