New here, atrophy question for PALS

[Derek]

Hello everyone. My name is Derek and my wife's cousin (more of a brother to her) was diagnosed with ALS in September. I have been helping him complete a new bathroom that will allow him wheelchair access when the time comes. I am also slowly taking over many tasks around the home for him as he progresses. He has had slurred speech since August of last year and in the past few months, developed more trouble swallowing. He has all but lost most of the ability to use the pinching movement of his thumbs and forefingers, but his grip is still working, although lately he has dropped a few things.

Last night we were working and he raised his hand above his shoulder to mark the wall with his fingernail and his index finger 'froze' in a curled position momentarily, at least until he lowered his arm and straightened his finger with his other hand. He said nothing of any pain with this 'freeze'.

I am trying to educate myself on ALS and it's effects so please bear with me, but is this the start of hand atrophy? Is there anything I should begin looking into for him that may help reduce these episodes or possibly extend the time he has for the use of his hands? He has always been a very strong and active person but I saw in his eyes last night the fear of losing use of his hands. If is it the onset of hand atrophy, in cases of others, what was your progression and timeline like?

Thank you in advance for any suggestions and help.

Derek

 

[joelc]

What you are describing is something I still get and my hands are all but useless. From my experience it is not a sign of impending atrophy. Atrophy will happen because that is what ALS does and there is nothing you can do about it. He will notice weakness before atrophy.
As far as timeline, everyone is different and there is no way to tell. That is one of the hardest things with this disease, there is no way to tell how long it will be before something else happens.

The big thing, and best, is for him to make sure he does not strain his muscles at all. They will not heal and this will speed up the downward spiral.

 

[Derek]

Thank you Joel. Yours was one of the websites I have read to help understand living with ALS. Thank you for putting it together, it has been a great help so far and very inspirational.

Ron is the type who will work until he no longer can, although he is beginning to listen when I tell him to take it easy or take a rest. Last night's incident was frightening to him. The two of us discussed it at the time and I calmed him as his stress and emotions will aggrevate issues such as his speech and swallowing. These are all small milestones to him that we note and keep track of.

I will reinforce to him your last paragraph. Thank you again.

 

[BethU]

Derek ... I, too, started with bulbar symptoms (speech, swallowing), and have had the contraction of my fingers from time to time for over a year. It's one finger on each hand. I have always been able to straighten them out under their own power or by using my other hand. Recently, I notice it's a little harder to straighten them when they curl.

My hand atrophy is quite advanced, but I still have use of my hands. I use pliers a lot, and bottle openers to get pill bottles open, etc. Rate of progression is not only unique with each individual, but the sequence seems to vary a lot, too.

Forum member Rose posted an exercise that her neuro suggested to slow down finger curling. You gently (very gently) stretch backwards each finger just a bit. I tried that frequently at first, and found that it caused a lot of twitching up my arms. Now that the curling of these two fingers seems a little more serious, I do it a half dozen times a day, very gently. As Joel said ... DON'T overtax or overstretch any muscle. It just won't recover. I don't know if this little finger stretch helps or not, but it feels good and seems not to hurt.

Your cousin may find that figuring out alternate ways to do things becomes a very creative enterprise, especially for guys who are handy and inventive.

Glad you found the forum. Welcome!

 

[Derek]

Thank you Beth.

I'll let him know about Rose's finger exercise and see if it helps at all.

 

[Blackpool]

Thank you for the tip on the bottle opener,I read BarryG and I think Al talking about pliers to help them get there debit cards out of the machine. I am looking for some lady like pliers maybe pink?Derek, you will find lots of help at this forum they are a great bunch of people.Welcome.

 

[Derek]

Thanks Blackpool.

We are testing the waters with various tools also. A couple of weeks ago, Ron was unable to button the fly to his jeans and I ended up doing so for him. My wife went and picked him up zipper fly jeans and I bought him a pair of needlenose pliers with a 90 degree bend in the end to grasp his zipper to pull it up or down. I also made him a more lightweight 'tool' from welding wire and an old file handle to use for zippers as well. We will continue to be inventive to overcome any obstacles he may run into.

This forum is truly a blessing.

 

[hopingforcure]

Derek,
Wow you sound like a great help, it is so refreshing to hear how much people come together to help the people they care about. You sound very handy and that will come in really great with ALS. Please feel free to come and visit us often, we are all in this together.

 

[KeeKer]

Has anyone tried an arthritis site? They have many tools for hands that don't have much strength or can't close to tightly. For pulling up zippers, pens, spoons, forks, buttons.

 

[Katie C]

Oh.. speaking of zippers, I may have had a brilliant idea while with Glen at the OT today. He has a combination button hook/zipper hook, but the zipper hook part is fairly small, and he just can't seem to manage hooking it onto the small hole in the tab of his jeans. What he needs is something a little larger to hook onto, and I think I have it... when making jewelry I use small split rings.. they look like tiny keyrings, about 6mm across. They should provide an easier way to use the zipper pull without being really obvious. I am going to try to dig some out tomorrow (most of my jewelry supplies have been put away due to lack of time to work) and will let everyone know if they work out

 

[joelc]

LOL. They work great! You can purchase them on-line. Also, if you use fish line, like 30 pound test, and leave it in a loop it is easy to hook your finger through it and do up the zipper. Being transparent it can't be seen.

 

[Blackpool]

I need to raid my husbands tackle box, I think we have 30lb line that we used for ice fishing,KerKer the arthritis site is a good suggestion, I have found using my grandaughters pen(High School Musical) it is easier to hold, of course kids things are made for easier handling.

 

[Katie C]

great idea Joel, thanks

 

[Al]

I used key rings on most of my zippers. They come in different sizes.

AL.