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Old 01-08-2016, 07:24 PM #1
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Default Does ability to blink even stop?

Hello - my dad was diagnosed with ALS almost 3 years ago. It began in his hands and now he is unable to move except turning his head and twitching fingers. His voice is fairly strong but starting to become affected. I've been reading that eventually, if he loses the ability to speak, most patients can use communication systems based on blinking. But what if you lose the ability to blink? Is that common? I had assumed that most PALS still retained that ability. I'm so scared for my dad and our family. Looking for any information and advice. Thank you
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Old 01-08-2016, 07:32 PM #2
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Default Re: Does ability to blink even stop?

I don't think it is common but yes it does happen. My sister has been unable to speak for a couple of years. She still has control of her eyes and uses eyegaze to communicate. So far no one in my family has lost eye movement before they died.

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Old 01-08-2016, 07:37 PM #3
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Default Re: Does ability to blink even stop?

Thanks so much for the reply. Does the eye gaze that your sister uses require blinking to work?
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Old 01-08-2016, 07:40 PM #4
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Default Re: Does ability to blink even stop?

I know you're scared, but I'm going to tell the truth. This is just my experience only.

It is possible for a PALS to get to that point. It's not common. My wife lost every ability, including the ability to blink, and she could no longer move her eyeballs. Totally locked in with no ability to communicate. Fortunately, she died within 24 hours. I personally would not want to live that way. Neither did she.

With technology, there might be another way to communicate. Some people may want to live as long as possible.

It's important to have the PALS wishes in writing for the doctors to see, and let's hope the CALS and family agree to respect those wishes.

I have one general caution for all sons and daughters: The wife is the next of kin, and is usually the one that your dad will trust to carry out his last wishes. Interfering with their relationship, or trying to persuade dad to do what you want, can be detrimental to your relationship and emotionally painful for the PALS. I'm not saying you're doing this, it's just advice I give to everyone.

You must be brave. I'm glad you're trying to help. My attitude is this: Since we can't save them, our mission then becomes making each moment physically and emotionally painless and comfortable. Hopefully we can even give them a reason to smile from time to time. In the end, a painless death, without fear, is the most we can give our PALS.
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Old 01-08-2016, 09:33 PM #5
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Default Re: Does ability to blink even stop?

I'm so sorry about your dad.

Yes, sometimes it does happen and they become what is called 'locked in' - meaning they cannot move nor communicate in any way.

PALS who are not using a trach and vent rarely become locked in, and if so not for very long as sadly their breathing normally takes them first.
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Old 01-09-2016, 07:18 AM #6
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Default Re: Does ability to blink even stop?

Hi Lori,

Eye gaze tracks the movement of one's eyes, not by blinking.

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Old 01-09-2016, 10:25 AM #7
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Default Re: Does ability to blink even stop?

My Mother in law who passed in October spent about a week or maybe two "locked in". Thankfully the good Lord took her quickly and quietly. Kate 58
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Old 01-09-2016, 03:52 PM #8
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Default Re: Does ability to blink even stop?

Quote:
Originally Posted by Lory View Post
Hello - my dad was diagnosed with ALS almost 3 years ago. It began in his hands and now he is unable to move except turning his head and twitching fingers. His voice is fairly strong but starting to become affected. I've been reading that eventually, if he loses the ability to speak, most patients can use communication systems based on blinking. But what if you lose the ability to blink? Is that common? I had assumed that most PALS still retained that ability. I'm so scared for my dad and our family. Looking for any information and advice. Thank you
Perhaps I am a freak of nature......but I have lost my ability to blink involuntarily, but can only blink if I want to. I can move my eyes fine.
I noticed this about 3-4 years ago, and had an ophthalmologist tell me that I don't blink normally. He thought I may have had a stroke or had something else going on. The only issue it causes is dry eyes, so I use drops 3 times daily to keep my eyes lubed.
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Old 01-09-2016, 05:40 PM #9
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Default Re: Does ability to blink even stop?

Mark,

Perhaps? I don't think so. Good to see your post.

Bill
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