My father was diagnosed with ALS six months ago.

[shz]

Hello, I don't want to go into the whole story, so I'll skip all the usual symptoms that led to my father being diagnosed with ALS (falls, lack of balance, etc.). The situation is that his speech is weak and hoarse but clear (there are ups and downs in this). But there are some symptoms that I wanted to ask if you also experience them. My father has a lot of discharge from his eyes, and in moments when he is even weaker and even more unwell, it increases and his eyes burn. In addition, after sleeping, his right eyelid does not open immediately. It takes him a while to open every time he gets up. He also hears very well suddenly (even whispering in another room is heard). After exertion (like eating), his cheek can become red and swollen (on the same side of the eyelid that did not open). The neurologists say that these symptoms have nothing to do with ALS and they don't know how to explain it, but there is no doubt that it is related to how he feels and it also started at the same time. It wasn't like that before. He is also very weak after the slightest effort and therefore is unable to do things, not because he does not have the ability to move the limb, but because it is weak. There is movement but no strength. Are these symptoms that you have? Is there a way to alleviate it?

I hope the English is correct because I used a translation.

 

[TLARRI1]

Hello, and I’m sorry to hear about your Dad’s diagnosis. My wife was diagnosed December 4,2024. So far she hasn’t experienced the symptoms that you are describing, like with the eyes discharging, and the burning.
However, she hasn’t experienced had problems with her tongue feeling heavy and she has been biting her tongue and the inside of her cheeks. She finally had to get a mouth gaurd that she uses while she sleeps. I hope you guys the best.

 

[lgelb]

I'm sorry about your dad. We will support you however possible.

Here are some threads about the eyes burning, and the redness may be related (you can always find things using the search button up top):

Post in thread 'Watery eyes'

Jan 5, 2025

I just started having watery eyes that feel like acid is burning them.
I have had the pain so bad that I didn't know what to do. I did run cold water over my eyes. And that calmed them down. I was just doing the same thing just before seeing this message.
I don't have arm pain, just no strength.

• 65Stang

Unfortunately, if there is movement but not strong movement, that is likely disease progression.

If he has overall weakness, I would make sure he has had recent breathing tests to see if he needs a machine (BiPAP) to help it, and is getting enough nutritious food, modified if needed to ensure that he swallows safely. When a modified diet is no longer enough, that would be the time to decide about a feeding tube.

 

[shz]

Thank you very much to everyone, may there be only good news.

 

[steve613]

ALS is associated with increased secretions usually orally. For my wife there was an inexplicably runny nose before the secretions got bad.

Runny eyes is usually a symptom of dryness. Oral fish oil, several grams of EPA daily is recommended by most ophthalmologists. And eye drops help. The systane gel is thicker and good for bedtime.

 

[shz]

He uses eye drops, tried systane too, it didn't help. We'll try the fish oil, thank you very much.

 

[lgelb]

It doesn't need to be a lot of fish oil, which can promote bleeding. I would start with the supplements that are EPA 154mg + DHA 308mg, but a high-quality brand to avoid gastric upset.

Genteal makes good drops in different thicknesses.

Don't forget the role of allergies, esp. in pollen season for the sensitive. An OTC nasal steroid is often worth trying.

 

[shz]

Thanks, we'll try, it's really marginal compared to the other things, the weakness is the most. Let's say today my father had a simple x-ray that the doctor said to be done a quarter of an hour away, and it simply weakened him to the point that after that he couldn't find any position for himself, neither lying down nor sitting, he was all exhausted a few hours later. This is so not him, I don't understand how people say they're flying, traveling. going out in the yard, it's already a big effort for him.

 

[Nikki J]

Fatigue is variable among pals. Some of us have pretty profound fatigue. Others not so much. Then there is the breathing issue. Has he had it tested recently? Is he maintaining weight? Also a lot of people are doing the things you mention in their power wheelchairs. If he is not it will take more energy.

Health and age factor in as well. Every pals is different