Idaho2790

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129
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PALS
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01/2018
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Idaho
I was diagnosed with progressive Bulbar Palsy I. January 2018. Although I could no longer swallow or speak by April of 2018, a PEG. helped and things were ok until Christmas of 2018. My limbs are weakening but I’m making the best of that. My biggest worry is my eyes. Even after sleeping well with a BiPap for 10 hours, I have trouble keeping my eyes open. If I read, they close. Is this something that is normal? Because my hands are weakening, I feel it won’t be too long before I may need an assist with a Tobii eyegaze or something similar.it has occurred to me that maybe there are muscles causing this new obstacle,
 

lgelb

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Hi Idaho,

In some cases, MNDs do affect the muscles that open and close the eyes. And you're right, if this is true in your case, eyegaze may not be a good fit. Can you still blink whenever you want to? Are there other muscles like a cheek twitch or head movement that are reliable at this point?

When your eyes close, I take it you aren't feeling sleepy or tired?
 

Idaho2790

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Messages
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PALS
Diagnosis
01/2018
Country
US
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Idaho
Hi, Laurie. I’m able to blink without an issue. I really have trouble even when I’m on the computer. My mind is working fine. I don’t feel that I’m exhausted and, therefore, trying to doze off. I got new glasses several months ago. The doctor said that I have minor cataract on one eye but not ready for a surgery yet. My glasses are Progressive which may be a problem with the Eyegaze anyway.
 

Firefighter58

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Joined
Jun 21, 2016
Messages
517
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
Idaho, what meds are you on. My meds cause me to fall asleep once or twice a day, especially if I am reading or on the computer.. After an hours nap Iam fine until the next time I take my meds which is every eight hours. The last dose of the day is 11pm and I fall asleep quickly and sleep fine.
Al
 

patrick123

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Oct 4, 2012
Messages
432
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PALS
Diagnosis
09/2012
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co
ALS can affect the muscles, in my case it's my right eye, it stays open when I sleep. My neurologist first noticed it. And my eye doctor confirmed it. I have have a full blink and my eyes dry out.

Patrick
 

Kristina1

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Joined
Jan 26, 2017
Messages
575
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
I have bulbar onset with a lot of facial weakness (cheeks, lips, chin). I too have heavy eyelids now, though not as bad as your describing. But my eyeball itself is unaffected. I tell myself if im using eyegaze down the line I can always use tape to support eyelids or something.
 

Idaho2790

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Messages
129
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PALS
Diagnosis
01/2018
Country
US
State
Idaho
Al, I wondered about that too, but my eyes are closing before I even get my meds. The right eye just has a problem staying open. And if I’m outside and the sun is shining I can’t keep them open without strong sun glasses! Never had this issue until several months ago. Think I need to see a specialist to be sure what is causing this. If I need eye surgery for cataracts or ? I think it’s better to do it now instead of town this rocky road!
 

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
129
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
I’ll remember your suggestion. No longer have to worry about what I would look like! Paper towels in my mouth for the drooling and tape on my eyelids to be able to see! Beautiful for sure, lol!
 

Jamesgol

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Joined
Dec 21, 2018
Messages
37
Reason
PALS
Diagnosis
12/2018
Country
US
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OK
I notice when I wake in the morning my eyelids don't want to open right away. It can take 10 seconds to finally convince them.
 

lgelb

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For anyone whose eyes are not opening and closing normally, do make sure you use heavy-duty eye drops/gel at regular intervals. It's blinking that keeps them moist to help avoid corneal ulceration and inflammation.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
517
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
Idaho, when you have the paper towel in your mouth don’t smile or laugh, you will slobber all over your self, I know from experience
Al
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
578
Reason
PALS
Diagnosis
04/2015
Country
US
State
OR
I plan on using these if my eyelids go south on me

Look up “ptosis eyelid crutches” for examples
(Commercial link removed per forum rules)
 
Last edited by a moderator:

HiBob

New member
Joined
Feb 9, 2017
Messages
9
Reason
PALS
Diagnosis
1/2017
Country
US
State
Michigan
Hi Idaho. There could be a couple nerves being affected here. Your upper lids are held up by your levator muscle. It is innervated by the ocularmotor nerve ( 3rd cranial nerve) , which also controls the muscles that move your eyeball around. The muscles that help you blink is a different nerve, the facial nerve, which is off the 7th cranial nerve.

How these are impacted by ALS, I don't know. If the upper lids levator muscle is the problem, surgery could be an option to raise up the lids, being careful not to go to far and cause exposure problems from an incomplete blink.

I would suggest asking your current Dr for a referral to a neuro ophthalmologist. They are sometimes hard to find, hopefully there is one close. Hope this helps.

Bob
 
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