Suzannah
Distinguished member
- Joined
- Mar 19, 2014
- Messages
- 132
- Reason
- DX MND
- Diagnosis
- 08/2014
- Country
- Uni
- State
- TEXAS
- City
- Deep in the Heart of
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
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