There’s a first time for everything, including Botox!

No, I did not get Botox to look younger, rather I received my first Botox treatment to help ease the stiffness in my left hand.

Early readers of this blog will remember that my left hand had begun to claw, meaning my fingers had begun to curl into the palm of my hand and could not be extended. This made it difficult to trim my fingernails, open my hand for cleaning, and change shirts without a lot of pain. Left untreated, it would become an increasingly worrisome health issue.

Painful progress

My first two occupational therapists were unable to make a significant improvement, and essentially wrote it off as too far gone to fix. Fortunately, my third and current OT from CareResource Hawaii had prior experience working at a hand clinic and made it her mission to straighten out the fingers of my left hand.

To say the least, it was incredibly painful therapy. But little by little, week after week, Kim was able to slowly help me release the tension in my fingers.

Additional relief from Botox

My neurologist had also recommended introducing Botox to my left arm muscles to help further release the tension in my fingers. Botox works by blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. This provides relief from spasticity symptoms including pain and muscle stiffness.

This past Monday I went in for my first treatment of three shots, one in my elbow and two in my forearm. The location of the shots corresponded with the troublesome muscles connected to my fingers. And no, the Botox did not make my left arm look younger than my right arm.

Introducing the Botox after the progress made with my OT, and regular use of a hand splint–which I wear once a day for an increasing interval of time, I’m now able to lay my left hand flat for the first time in well over a year. Not perfect, but better than it has been in a long time.

It will take about another week or so to see if there’s additional benefit, and if so I’ll go in for another treatment in about 4 to 6 months.

A new shower chair

This past week, we also received our new shower chair. Thanks to a grant from Team Gleason, we were able to have a shower chair custom-built by Nuprodx and delivered to our home in less than three weeks.

Jen was able to assemble the chair and we used it for the first time on Wednesday.

This new chair provides the closest experience to a ‘normal’ shower I’ve been able to have since early 2022.

Because the new shower chair tilts, Jen can use our Hoyer lift to place me in the chair and roll me into the bathroom, and–using a rail system–slide me into the shower. The chair also allows me to recline back and has a headrest to support my head.

Our bathroom is too small for a hoyer lift, so previously, we would transfer me from my recliner to a transfer wheelchair, wheel me into the bathroom, and then I would stand with assistance to turn and sit on the shower bench. The whole process would be repeated in reverse at the end of my shower. It was physically exhausting and becoming nearly impossible and quite dangerous.

Team Gleason has been a fantastic resource since beginning my ALS journey. They previously provided funding for my voice banking (2021), covered the cost of the elevation system on my power wheelchair (2022), the co-pay for my eye gaze machine (2023), and now fully paying for the new tilting shower chair and track system.

More improvements pending

On another front, we were able to pay the deposit for the living room ceiling lift and finally secured some info from the building architects that was needed before the contractors could proceed and hope to have a timeline for that work to be completed soon. More updates on that when we have them.

If you were one of the many friends and family members who contributed to our recent GoFundMe stretch goal to help pay for the ceiling lift installation, thank you very much.

As always, Jennifer and I are extremely grateful for your love, support, and aloha.

’til next time, José.