Old 08-10-2017, 10:26 AM #1 (permalink)
New Member
 
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 71
Labinma is on a distinguished road
Labinma Labinma is offline
New Member
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 71
Labinma is on a distinguished road
Default Asleep or not?

My previous post was about driving and "zoning out". I would love to understand more this mode the patient experiences into where your eyes almost close but not all the way, and it is not necessarily fatigue but a result of side effect of ALS? Another way put, looking half awake but are not? When confronted, my husband does realize it is even occurring? Can anyone throw some insight into this, describe what this occurrence, or if they have experienced this, What is it a result of? What can be gently suggested if so? Gently I say as my hubs not willing to use an assistance.
Labinma is offline  
Old 08-10-2017, 10:57 AM #2 (permalink)
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 220
Kristina1 is on a very distinguished roadKristina1 is on a very distinguished road
Kristina1 Kristina1 is offline
Member
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 220
Kristina1 is on a very distinguished roadKristina1 is on a very distinguished road
Default Re: Asleep or not?

Maybe just poor eyelid muscle strength. My neuro always tests my eyelid strength and other facial muscles at clinic visits. I am bulbar onset like your husband (if I recall correctly from your posts).
Kristina1 is offline  
Old 08-14-2017, 08:31 AM #3 (permalink)
New Member
 
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 71
Labinma is on a distinguished road
Labinma Labinma is offline
New Member
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 71
Labinma is on a distinguished road
Default Re: Asleep or not?

makes sense, thank you.....
Labinma is offline  
Old 08-14-2017, 01:38 PM #4 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,684
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,684
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
Default Re: Asleep or not?

I'm healthy (as far as I know) but my right eyelid is mostly closed most of the time. It makes the docs test for Myasthenia Gravis. Often, both my eyelids are only semi-open. Mine is due to chronic sleep deprivation, as I get only 3-4 hours per night for weeks or months on end.
Atsugi is offline  
Closed Thread

Tags
als, als?, driving, fatigue, love


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
head falling while asleep and can't pick it up to breathe rachlucia General Discussion About ALS/MND 15 06-24-2014 12:23 AM
My Husband Jerks Violently Mostly When Asleep CaringWife ALS and FTD 4 07-13-2013 08:15 AM
Hand Asleep kelleyri People With ALS - "PALS" 1 09-22-2011 10:39 AM
What drugs are you taking to help you fall asleep as an ALS patient bssofro People With ALS - "PALS" 12 09-15-2010 04:33 PM


All times are GMT -5. The time now is 05:20 AM.

 

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