I want a new drug…

This week is an update with a bit of excitement, mixed with new expectations, and blended with a bit of hopefulness. Every four months I have a standing appointment in downtown Chicago at the ALS clinic at Northwestern. These visits usually consist of me repeating the same symptoms, having great conversations, then leaving with nothing changing. Those symptoms have always included fasciculations, loss of strength in my left hand, and cramps that can occur anywhere on my body. Cramping has always been one of the scariest parts of this disease because they can linger for days and I fear that it my be “the cramp” that leads to the death of that muscle.

At my latest visit, my doctor came up with a new idea using an older drug that has been prescribed for patients with epilepsy. He detailed that its intent was to calm the nerves to hopefully prevent cramping. I’ve rejected all of the drugs that have been previously recommended, but this one seemed to make sense to me, so I gave it a try.

Over the last month, I thought I’d been feeling better but was unable to put any quantifiable reason for the feeling… until a couple of days ago.

Every night, when I’m done reading, I toss a couple of pillows off the bed onto the floor beside me. In the morning, I put those pillows back on the bed. For the last several months, I’ve been unable to lift those pillows with my left hand, resorting to me reaching down with my right. Subconsciously, I recently started using my left hand again and was startled when I realized I wasn’t supposed to be able to do that!

There have been many times in the last couple of years where Amy and I were watching TV, speeding though the commercials, and my left hand couldn’t operate the remote. (I use my left hand because the right is reserved for holding Amy’s hand.) In the last few days, I’ve been changing the channel for no reason – cranking the volume up and down and searching, just because I can! This is where I should encourage you not to take your remote control for granted.

I continue to have limitations and coordination issues with my left hand, but I’m excited to keep working with it to see what other improvements I can make. I’m still not a big fan of drugs, but this one does seem to have produced some results for me. (I forgot to mention, I’ve only had one cramp over the time period as well… see editor’s note below.)

Now, it is possible that one of you has been praying for my left hand and the prayer has been answered, or that it’s a combination of prayers and effort. Whichever it is, it doesn’t matter because I’m always going to:

All I know is that I’m working and I’m praying – and good things are happening.

It may not seem like much, but I’m giving these new developments my own little Hallelujah. For the first time in a couple of years, I can finally talk about something getting better instead of being happy about how slowly they’re getting worse.

As always, thank you all for your thoughts and prayers and whatever else you’re sending my way. It’s working and I’m forever grateful.

FYI…Diesel is still being a pain in the butt and I will write about him and his misadventures again soon. We love him dearly.

Have a great weekend.

God bless.

Coach

Editor’s/Amy’s note: In the initial draft, the word “cramp” was missing the “m” so you can imagine my concern when I read that sentence….