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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
600
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
The post in general forum about eye lid surgery frightened me. I was under the impression that all or vast majority of pals can use eye gaze communication indefinitely despite body becoming fully paralyzed. At this stage in my disease my feelings are that I want to continue to live for as long as I can communicate. I've already told my husband if I ever get completely locked in I'd rather die. Because up to that point I have power to change my mind if I come to feel I no longer have a quality of life. I could still ask to be taken off a vent and allowed to pass.

How common is it for someone to lose the use of their eyes? I can definitely close my eyes, but I don't think my 'seal' is perfect because in the shower even though my eyes are closed I get water in them. Before I thought nothing of it, just another als thing, but now I'm scared this could happen to me down the road.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,470
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I don’t think it happens very often. I can only remember a handful of posts where it happened in all the time I have been here. It is important that you have had this conversation so your wishes are known but please don’t worry too much as it is not the norm
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
939
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
it is a scary thought, but like everything else it does no good to worry about. As you know I'm close to the end of my journey and here I am eye typing along. When tired my right eye is hard to open but that is recent developments.

I have always lived one day at a time Since cursed with this monster.. .I figure We can waste a whole lot of time worrying about what may happen, but it won't charge a damn thing.

BTW I totally agree with you about being locked in. I will not go on in that state!
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
600
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Thank you. The first year after diagnosis it didn't sink in fully emotionally. Now that it has, I am struggling to control fear, anxiety, and grief about both living and dying in the future. I just started seeing a therapist, and I take lorazapam as needed (not daily). But I still have to work hard to force my thoughts to stay in the present.
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
593
Reason
PALS
Diagnosis
04/2015
Country
US
State
OR
It's rare but it does happen. I have told my wife that if it ever happens to me to put me down so to speak. I am fortunate to be on a vent, never thought I'd say that, so my demise would be a pretty peaceful way to go. My biggest fear is that I have exceptional tolerance and they would not give me enough morphine " to do the job".

I just remember the saying that " worry is interest paid on the inevitable", that usually puts things in perspective.
 
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