Eyesight issues

[CoachMeg]

Did you know that ALS can affect the muscles of the eye? I didn't. Everything I had read said that, for whatever reason, the eye muscles tend to be immune form the disease. Well guess what? It can affect the eye muscles. (sigh)

My husband has been experience trouble focusing the last few months. It is worse the more tired he is. He has always had pristine vision and this was very frustrating for him. Well, we mentioned it to his neurologist on Wednesday and he confirmed for us that, although extremely rare, it is ALS that is the culprit. Yet one more thing this stupid disease has taken from my husband. He is an avid reader. It is one of his greatest vices. I know there are audio books and we will start getting those for him. But it really just made me mad, darn it. :twisted:

I am tired of learning new things about this disease. The only new thing I care to learn is that there is a cure.

Sorry, maybe this should have been a rant instead of caregiving. Really, when I started this I just wanted to share new information with you. I dismissed the eyesight thing as his just being tired. I feel a little guilty about that. I hate to always think the worst, but as new symptoms appear, I need to give more credit to the ALS.

We did get good news. We sent more blood work in for the full work up on genetic markers and everything was negative. They now have enough blood that has new tests become available, they will continue to test for things.

I hope everyone has a great Friday!
Love and light
Meg

 

[momap53]

Meg, so glad to hear about the negative test results!

It's upsetting to learn of more things that ALS takes away from PALS. It seems reasonable that since we have some control over our eye movement that they would be affected. Same with bladder and bowel. I recall early on hearing that the mind wasn't affected only to learn about the incidence of FTD in ALS. Some days I'm just sooo tired of this mess.

I'm an avid reader too so know that this is a great loss for your husband. I hope he'll transition well to the audio books.

 

[asantiago]

Meg, take him to an eye doctor. A lot of literature says it doesn't affect vision but it sure did my mom and I've read here that many pals have the same problem. My mom ended up needing prescription glasses soon after diagnosis and that helped her. Hopefully that will help your husband and he can continue to read. Or possibly just some reading glasses would work or get him by until prescriptions ones come in.

 

[Miss]

My husband had perfect vision before ALS. Within no time, he had to have readers.

 

[cervus]

I've read it's very rare for your eyesight to be affected but it is in a few cases. If he's able to have his eyes checked then, as others have suggested, he should. Cruel disease. Yasmin.

 

[Barbie]

meg- sometimes my husband's eyelids get twitchy--I have always assumed that ALS could affect them. his eyes get dry and very tired. he doesnt complain at all so I don't know if his vision is affected . I would think that if the eyelid muscles are not closing enough due to ALS, that the eyes would get dry and that would affect vision. I think I have even read on this forum about someone who's eyes wouldnot shut due to ALS and they had to be taped down at night. not sure how old you husband is, but remember that most all people over 40 experience a change in vison! I did--went from perfect to needing readers in just a year and sound like my mom now when I say "it's too dark in here to read" and "why are the directions on this box so small"

but, I rinse my hubby's eyes acouple of times a day with a pH balanced eyewash (not visine) just to make them feel better. He likes to be on the computer sometimes 10-12 hours per day snd I do notice that his eyes get very red and tired. books on audible.com is nice--we can listen together. he cant turn the pages anyway or hold a book so that works good.

It does suck always needing to adapt the way things are done! Hang in there!

 

[Miss]

Just to clarify, my husband went from perfect vision to readers in about 3 weeks. Like his progression with ALS, it was very fast.

 

[10steps]

Hey Meg;

Itsn't it funny how so many of these "rare" occurrances happen in so many PALS? When I read your post I found myself so irritated with all the misleading information..."no that isn't typical of ALS, no that shouldn't be from the medication, it's very possible to plateau.."ARGH! I always wished they would be straight forward - sorry but this was a perfectly healthy young man...WHAT ELSE COULD IT BE? YOU CAN''T FIND ANYTHING ELSE! LOL(shaking head).
I found reading to my husband very comforting, both to me and him. It's odd since he wasn't a big reader but loved to have me read to him. It became a "chill" time where we both were very in tune. Maybe give it a try sometime.

 

[Barbie]

10 steps how true! Rare because the just dont know!

 

[brooksea]

My husband had Lasik several years before his diagnosis. He could see perfectly. About two years after his diagnosis, he complained of reading/sight issues. I took my husband to an optometrist and he needed reading glasses. They never seemed to be enough, as he always complained and I had to switch out glasses constantly.

 

[cervus]

You're right 10steps! So many times people acted shocked at side effects, symptoms - right to the end in fact.