ALS Progression

[catcaniac]

I just wanted to get some feedback on PALS progression. From what I have read in the past, eye function and bladder functions are generally unaffected in ALS patients. My husband was diagnosed last December and had been experiencing symptoms since last June. He has been trached and ventilated with a PEG tube since March of this year and lost all movement except for his facial in July. We have an eyegaze system but my husband has had great difficulty using it since we got it. Here are some of the issues: in the beginning, eyes watering, oozing, and severely bloodshot. since, progressively having difficulty with accurate control of eye movements. For example, since about a month ago, if I ask him to close his eyes, sometimes he can't. Same with opening his eyes, he can't always do it when asked. He only tracks objects occasionally and most of the time, tracking is completely unreliable. Since about 2 weeks ago, we are noticing a wet bed with someone tending to him 24 hours a day and most of the time, there are two people attending him. Even when he has recently filled the urinal with a good amount, we notice some wetness. Has anyone else experienced difficulty with bladder control? In the beginning, I chalked it up to the nurses not paying good enough attention but now it is happening with all of us. I am considering condom catheters to control skin breakdown now. But I just wanted to know if anyone else had experienced loss of eye movement or bladder control.

 

[Barbie]

I can't really speak to most of what you are talking about, but I have read other posts about difficulty with eye movement. I did find that giving my husband ALkamax to balance his pH helped tremendously with his oozy, bloodshot and burning eyes. Dont know the science behind it but it made his eyes feel better and stop oozing. originally read about it on this site and tried it out. Alkamax is sold in vitamin stores not a script.

 

[catcaniac]

I did buy the Alkamax and still have some. We kept checking his pH but did not find that it was out of the norm so we did not give the meds.

 

[NCGIRL]

I don't have any eye problems but I do have the bladder control problems. Have been for the past 2 or 3 months. I can't hold the urine in anytime I laugh, sneeze or cough. Also if my bladder is full I can't hardly hold until I get to the bathroom due to it taking me to long to get there since I can't walk so well anymore. I noticed it getting weaker back towards the end of Sept. and when I started taking baclofen in October it became worse. Not sure if the baclofen caused it or if the disease caused it but I've stopped taking the baclofen and it seems to help a little.

 

[Ms. Pie]

Ncgirl honey, do you have a rolling walker to get you to the bathroom quicker? If not, do you have an ALSA Loaner closet you can borrow from? Ours will loan us things for as long as we need it! They're great!

 

[Jellycat]

Hi there, good to see you. I was only wondering yesterday how you both were as I hadn't spotted one of your posts lately. You were asking about eye & bladder control. Although many things I've read about als say that the eyes are unaffected, it was not so for my pals. She could not blink at will even from fairly early on. She could track something with her eyes but not with great reliability. As to bladder control for most of the disease course she had a little trouble when she laughed or sneezed, that kind of thing (stress incontinence). Later bladder control did go completely. At that point she opted for a catheter. Though I was nervous about that, fearing infection, it did make her a lot more comfortable. Hope you both figure a way through soon.

 

[Barbie]

I never even check his pH (bad me). I just give him one a day and it helps. If we miss a couple of days they definitely get oozy again and burn. also rinse his eyes several times a day with a natural tear or eye wash to relieve dryness.

Hang in there!

 

[retiredmus2010]

Thank you for this thread. Pals has had trouble with burning, weepy eyes and I thought it was just something we would have to endure. Once again, I am lovin' this site.

 

[AlabamaGal]

My hubby has all the problems above, including the burning, weepy eyes.

 

[Atsugi]

Poorly fitted oxygen mask was the source of our eye burning. Get a better fitting mask.

If one brand of eye drops is not right, use a different brand. They're different. And make sure that the eyes are not subjected to even the slightest imperceptible breeze.

For us, eyes were the last thing to go, after speech. When Krissy finally lost the ability to move her eyes, she was locked in, and expired in less than 48 hours.

Her ALS was fast moving from the feet up. It was 8 months from the first drop-foot to finally being locked-in and having a quiet, dignified death.