Old 09-10-2018, 09:44 AM #1 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Default frightened by another post

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.
Kristina1 is offline  
Old 09-10-2018, 10:41 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,642
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,642
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: frightened by another post

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
Nikki J is offline  
Thanks from
Kristina1 (09-10-2018)
Old 09-10-2018, 10:50 AM #3 (permalink)
Senior Member
 
Join Date: 2014
City: Tucson
State: AZ
Country: US
Diagnosed: 12/2013
Interest: I have been diagnosed with ALS.
Posts: 865
azgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to behold
azgirl azgirl is online now
Senior Member
Join Date: 2014
City: Tucson
State: AZ
Country: US
Diagnosed: 12/2013
Interest: I have been diagnosed with ALS.
Posts: 865
azgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to behold
Default Re: frightened by another post

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!
azgirl is online now  
The Following 7 Users Say Thank You to azgirl For This Useful Post:
affected (09-10-2018), blitzc (09-14-2018), frankb (09-12-2018), JimInVA (09-11-2018), KarenNWendyn (09-10-2018), Kristina1 (09-10-2018), texastc (10-07-2018)
Old 09-10-2018, 12:56 PM #4 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 483
Kristina1 is just really niceKristina1 is just really niceKristina1 is just really niceKristina1 is just really nice
Default Re: frightened by another post

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.
Kristina1 is offline  
Old 09-10-2018, 02:21 PM #5 (permalink)
Senior Member
 
Join Date: 2015
City: The coast of
State: OR
Country: US
Diagnosed: 04/2015
Interest: I have been diagnosed with ALS.
Posts: 558
notBrad is a jewel in the roughnotBrad is a jewel in the roughnotBrad is a jewel in the roughnotBrad is a jewel in the rough
notBrad notBrad is offline
Senior Member
Join Date: 2015
City: The coast of
State: OR
Country: US
Diagnosed: 04/2015
Interest: I have been diagnosed with ALS.
Posts: 558
notBrad is a jewel in the roughnotBrad is a jewel in the roughnotBrad is a jewel in the roughnotBrad is a jewel in the rough
Default Re: frightened by another post

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.
notBrad is offline  
The Following 2 Users Say Thank You to notBrad For This Useful Post:
Kristina1 (09-10-2018), wishmobbing (09-10-2018)
Closed Thread

Tags
age, communication, eye, eye gaze, life, locked in, paralyzed, power, quality of life, scared, shower, surgery, vent


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
I am very frightened guitargirl77 Do I Have ALS? Is This ALS? 6 04-04-2017 10:40 AM
Very frightened. JenniferSex1 Do I Have ALS? Is This ALS? 10 02-24-2015 04:00 PM
Very Frightened Ohno:( Do I Have ALS? Is This ALS? 7 06-21-2012 10:50 PM
Frightened I may have ALS cmax Do I Have ALS? Is This ALS? 3 07-03-2011 02:07 AM
Frightened-Please help simmo3505 Do I Have ALS? Is This ALS? 3 11-23-2009 12:26 AM


All times are GMT -5. The time now is 12:28 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016