Eyes pain when open

[rajiv]

Hi,

My Mom is in very advanced stages of MND since being diagnosed in 2006. All muscles have failed but mentally she is a sharp cookie and a true fighter. The maximum she can do now is open her eyes but is unable to close them on her own. We have to use some sort of medical sticking tape on her eyelids to shut them and keep them closed by sticking the other end of the tape to another part of her face. Since she cannot blink, all communication is now with alphabet charts and her eyeball movement.

However since the last one month or so she has been getting pain in her eyes if the eyes remain open for more than 30 minutes or so. Eyesight is not blurry, there are no headaches, no redness or infection in the eyes. Eyes are not really dry because we put eye drops. We have even tried to put dark glasses on her eyes when the eyes are opened thinking maybe her eyes have become sensitive to light – but even then she gets the pain. There is no abnormal airflow in the room that could irritate the eyes.

It is to the point now that she is unable to open her eyes more than an hour or two over a period of 24 hours. Due to this of this, her ability to communicate, watch TV etc. is severely affected and has had an even worse effect on the already diminished quality of life.

Has anyone had a similar experience or has any suggestions to try out. We are at a total loss. Any pointers, questions or suggestions would be really helpful.

Thanks,
\rajiv

 

[indigosd]

I had to read your post three times to make certain that I was understanding your post. Are you saying that she has completely lost her blinking reflex and is UNABLE to close her eyelids?

 

[halfin]

I just want to say congratulations to your mom and your family for fighting this disease all the way. I hope I have the courage and determination to remain alive even until my eyes give out.

I don't have any experience with eyes not closing. Naively, I'd say of course it would hurt to have your eyes open for 30 minutes without blinking. If I try to hold my eyes open and not let them blink, they start to hurt after about 30 seconds. I understand you are using eye drops, etc, and that it was ok in the past.

I read recently about a procedure where they attach small gold weights to the eyelids to help them close, for people with similar problems to your mom. Maybe then she'd have enough strength to open and close them. Or maybe you could help her close and rest her eyes for a few moments every 10 minutes or so, maybe then the soreness would not build up.

 

[rajiv]

Are you saying that she has completely lost her blinking reflex and is UNABLE to close her eyelids?

Yes unfortunately that is what I am saying.
\rajiv

 

[MickeyMouse]

I have no suggestions on this rajiv, but thank you for caring for her so well for so long.
You are a good son.