Any recommended gadgets to help with loss of hand function?

[Suzannah]

Hi all, it's been a minute since I last posted here, but I still see lots of familiar names.

For those who don't know me, I was diagnosed with the UMN disorder Heriditary Spastic Paraplegia in 2014 but was then undiagnosed by the NIH in 2015. After years of searching for an answer, I finally gave up looking in 2018. I recently applied to the NIH's Undiagnosed Program and am hoping I might get accepted.

Anyway, the reason for this post is that I have been progressively losing muscle and function in my hands for years, and in the last month or so, I've basically lost the functional use of my left hand. I can still move everything, but my hand is almost always in a claw shape (can still straighten with effort but it's the default position now) and I've lost so much muscle around my thumb and index finger that I am now no longer able to tear open packages, open jars, etc. Yesterday I discovered I couldn't get my gas tank unscrewed. It causes searing pain in my hand when I try to make these motions (which is also new).

Until now, I hadn't realized just how much one uses their nondominant hand to function in the world. Switching hands doesn't help much because my right hand is weak, too, though not as much.

Does anybody have any suggestions of things/tools that can help with these kinds of tasks? I'm trying to get an appointment with an OT but am currently living on a tiny island in the middle of nowhere, so it's a little trickier than usual.

Thanks!
Suzannah

 

[Nikki J]

For gas is there a human on the premises? Ask for help

for jar opening I have a ridiculously expensive electric jar opener. It has been great. I saw something on amazon last year that claimed to do the same thing for about 20 dollars.

for bottles I have a dycem cap that helps. In general dycem is helpful for all kinds of things

a kelly clamp can be useful for grasping if you can manipulate it.

can you operate scissors to open packets?

get signature stamps if you have not already. Input your address list into your computer and get a label app

 

[lgelb]

Hey, Suzannah, great to see you, but sorry to hear of your progression.

Sharp but short Japanese scissors for packages to use w/ better hand [Amazon]
For jars: Kuhn Rikon opener [ditto] or electric as Nikki has
Also, the suction on some lids can be broken using a bottle cap remover (the kind that also punches holes in large beverage cans) and hot water
Agree, Dycem gives you more leverage and could make grasping more comfortable. Gloves , maybe the smart phone kind, could, too.
Gas tank: see something called Freedom Gas Cap Wrench, but haven't tried it. Possibly your car could be retrofitted to be capless. But that begs the question of how long it's safe to drive.
Hopefully the OT can recommend a splint or glove for sleeping and/or during the day to reduce the pain and possibly improve function.

Best,
Laurie

 

[MupstateNY]

In PA there is a trial of Nuro Sleeve. I'm trying to get into it. Apparently it works best if you have a bit of arm strength.

 

[Nikki J]

I am amazed that is still recruiting. Are you sure? It started over a year ago and only had 10 adult slots that were not limited to ALS.

 

[MupstateNY]

I heard back. They will hopefully put me in the next cohort, to start May or June.

Also: Nuada Glove (costs approx. $2,000 US dollars)

 

[MarkD]

I can pass on some of what I have experienced if it will help. I've lost a lot of muscle in my shoulders and in my arms in my hands and fingers. There are some things I just can't do anymore but there are still some things I can albeit it takes a lot more out of me. For instance I can't really pull my pajama bottoms up over my hips using my index finger and thumb with both hands like I used to, however I found recently that I can make fists, and put both fists inside my pajamas pull my arms apart and pull upwards with my fists, and I am then able to get my pants up above my hips.

My arms get so tired but I can still blow my nose by resting my elbows on a high back chair and then I am able to bring my hands to my nose, with the tissue without my arms getting so tired. As far as eating I can't really do much with a spoon anymore, as it just takes too much strength to hold the spoon out perpendicular. However I can still use a fork and once I've fork the food then bring it up to my mouth quickly. I've also have started to eat a lot more pizzas, which my wife cuts into very small pizza slices, which I'm able to lift up to my mouth. I bought a bidet early on and I don't know what I would have done without that. I

can't really type like I used to anymore, though I can peck type if I need to, what is really been helpful though is the speech to text that comes with windows 11... Push down the windows button on your keyboard and then type H to activate it... I also bought a larger mouse that works out a little better with my hand and weak fingers. Everything I've written here is actually been done with the speech to text on my computer, without typing it all out. You can also buy some computer programs that are specifically designed for speech to text, but the default windows 11 system is working OK for me so far, though it misses some words here and there, which isn't a big deal.

 

[MupstateNY]

I'm glad speech to text is working well for you. My typing and my voice are neck and neck to see which will become totally unusable first.

 

[Doing My Best]

I've written about this elsewhere, but for those who weren't in those threads, in case it's helpful - my husband who had limb onset, starting with arms and hands, was loaned an Obi robot by our local ALS Association. It's an amazing machine that allows you to eat hands-free. It has a base about the size of a placemat with a four-section plate, and an arm with a spoon attached. It will scoop up a bite and deliver it directly to your mouth, using buttons that you can control by a slight press of the hand, or if that's a problem, by using your feet. My PALS took it along for meals at friends' homes and restaurants, and used it at home all the time for about 18 months until he went on a feeding tube. We both loved it. It's expensive to buy but if you can find a loaner it's a godsend. You can see pics and videos on the company's website, just google Obi feeding robot. (I don't get a kickback - both PALS and I just thought it was a marvel, so I'm a bit evangelistic about it!)

Voice controls on iPad and iPhone have been his other major assist, since he stopped being able to type very early on. He's learning to use an eye-gaze speech generating device now, as his speech is declining, but it's slow going so far.

 

[Nikki J]

The obi is amazing. I am glad he got to use it. The people I have known with one were vets. The VA does seem to cover it. If your insurance doesn’t it is currently listed at 8200. Even if people have the money I would look at overall progression rate to decide. If you think swallow is going to go fairly quickly it might not be worth it.

how did the obi do with the phase just before the feeding tube? Feeding my sister was tricky as she choked a lot. Of course she also waited too long for the tube

the dictation function on the ipad and phone is very handy I agree. I use it a lot.

 

[Doing My Best]

Nikki, there was a period of two or three months before he got the feeding tube when he became gradually less comfortable with the Obi. Part of it was progressive weakening of his head control so that he couldn't do the very slight bobbing necessary to get the spoon in and out of his mouth. There were also fewer foods he wanted to eat even cut up very small, because of the trouble chewing and swallowing. He got a very long run with Obi but eventually it didn't work for him, and we gave it back to ALSA who had someone else that was thrilled to get it.

 

[Tomswife]

I have no idea if this would be helpful. But look at: saebo dot com

Saebo has devices for victims of stroke, which is very different from ALS. But maybe?

My PALS got a soft hand brace from the PT to try to delay his fingers from curling.

 

[Mana]

Never heard of Dycem caps. Glad to know about them!

 

[Suzannah]

Thanks, all. These responses have been super helpful. I got some things off of Amazon to help around the house with opening jars, etc. I can still use scissors to cut open food packages, etc with my dominant hand, but I keep forgetting and keep trying to open them with my left hand, and end up with a huge searing pain in my hand. I guess after enough times of that, my brain will eventually remember. Still working on getting an OT appointment for splints, but I have the RX for it.

My NCS and EMG results have never shown any quantifiable damage in my hands (well, mild reduced recruitment) and there's a part of me that wonders if that means there's any possibility of ever recovering function.

Nikki or Laurie (or anybody else who might know) - do you know if clawing in the hands usually happens *because* of weakness/loss of muscle? Or the other way? That the clawing decreases movement, leading to the muscle loss? Or maybe it just really depends on the genesis of the illness/disorder? (sorry for the variation on the "atrophy before weakness or vice versa" question here, but I figured one of you might know).

Thanks,
Suzannah

 

[Nikki J]

Clawing is usually from weakness. if you are clawing try to stretch- do passive rom. You likely need a splint at night