Eyes movement

[Elven_Star]

My dad was diagnosed in July 2007 with ALS. When I asked his doctor whether he was sure or not, he said EMG test results are conclusive. Is that true?

My dad is completely immobile and using ventilator now. It's starting to affect his eyes too. He can't completely close his eyes when he wants to sleep for example and asks us to do it for him. Since his eye movement is the only way he can communicate with us, it has me worried. Can eyeballs completely stop moving? That'd be devastating for him. As if he is not under enormous pressure already. Why is it happening so fast? I read somewhere ALS doesn't affect eye movements in the majority of people and in some rare cases it affects the eyes after around 15 years.

Sorry if that sounded like an endless stream of whines. You know how it's like.

 

[halfin]

I'm very sorry to hear of your tough situation. That is very fast progression to have your father already having such limited muscle movements. Hopefully even if he is having trouble with his eyes, he will retain enough control to allow him to communicate. I read of a case where a patient retained the ability to move his eyes vertically but not horizontally. That could be enough to communicate with.

In case he does lose all communication, what they call the totally locked-in state, you should discuss it with him in advance, to find out his wishes. I have thought about it a little bit although hopefully such a decision is years away. It would be a scary way to live because you wouldn't be able to communicate if you had areas of pain or discomfort. At a minimum I would want to set up a lifetime reading list of books on tape.

I also read a study where they used fMRI to detect brain activity in response to various cues. Basically it is a test of consciousness. However when they tried it on subjects who had been locked-in for substantial periods of time, months or years, they were not able to elicit any responses. The subjects did not show signs of consciousness. So it is somewhat doubtful whether people can mentally survive the locked-in state.

Again, I am very sorry you and your father are facing such a difficult situation. I hope his progression slows enough to allow him to retain the ability to communicate in some form.

 

[Tokahfang]

I am so sorry.

I just wanted to chime in and add that a computer can be controlled by a solitary twitch, if he has one anywhere, anywhere at all. It is slow, but it works.

 

[Elven_Star]

Thanks for the replies guys. I have another question, if you don't mind. Can medicines like Zolpidem and Fluvoxamine have an impact on how fast ALS progresses? I've heard that they can have a negative effect but I'm not sure. An anesthesiologist and a neurologist prescribed them for my dad when he was in ICU, to help him sleep better and still uses them to sleep.

 

[ZenArcher]

There are many pALS on Zolpidem (Ambien) with no ill effects myself included. I don't know the other one so can't say.

 

[Elven_Star]

I see, thanks. Just want to know what's causing such a fast progress in my dad's ALS. Doesn't seem normal to me. To be ventilator dependent in under 1 year and now his eyes. This can't be normal.

 

[sadiemae]

The only bad medicine to be on with ALS is statins(in my opinion) HUGS Lori