ALS Clinic Update
I spent my day at the ALS clinic last Thursday. I should say “we”, my mom has never missed a visit. I’ll run through a few highlights.
I weighed 125 pounds in a hoodie, jeans, and shoes. That’s up from 122 in February and (if I remember) a low of 109 before I moved in with my parents. The difference is all fat, mostly in my belly―the result of more than three years of four meals a day.
I saw a palliative care specialist (he was a nurse practitioner who told me we’d met before) for the first time in what seems like more than five years. His job involves end of life decisions and the like. After a brief discussion of health directives and decision makers he got back to the feeding tube question I haven’t yet addressed. Essentially, the urgency of my decision depends on my ability to safely endure the surgery, which hinges on my lung capacity.
The respiratory therapist tests my lungs in a number of ways on each visit. To me, these results are by far the most important part of the day. My best attempt put my lung capacity at 69% of what is considered normal for someone my size, which was actually better than the previous mark. Overall, the respiratory therapist concluded, my lungs are about the same. That’s a big win and feels like a confirmation of my (quite possibly delusional) beliefs.
Lastly, there were a couple of unresolved items to address. On my last visit, my neurologist placed an order for a hospital bed with a local equipment supplier. I still don’t have it. Briefly, the adjustable bed is needed to elevate my body so that I don’t inadvertently swallow mouthfuls of air when sleeping with a breathing machine. (I discuss my difficulties using two different CPAP machines in the epilogue of my book. Buy my book!) Suffice it to say, frustrations with “the system” were expressed and an updated order placed.
The remaining point of interest was my uneventful and almost forgotten visit to a prosthodontist over the summer. Notwithstanding the full breadth of prosthodontic expertise (because I don’t know and I don’t really care to know), I was told to see that particular specialist as a way of improving my speaking voice. If you’ve heard me speak, you know I sound very nasal. That’s because the muscles in the flap that separates my mouth from my nose are very near death. The result is that a lot of the sound from my voice box escapes through my nose. My speech therapist thought (mostly theoretically) that a retainer-like insert could be fashioned to block that passage and allow all of the sound to come out my mouth, effectively amplifying my voice and removing the nasal tone. The prosthodontist we saw didn’t seem to have a clue (or any interest), and spoke of referring me to a colleague, but we never heard anything after that day. The speech therapist is going to inquire elsewhere and maybe, eventually, something will come of it.
I’m thinking I’ll get the feeding tube port “installed”. I’m not looking forward to having a permanent plastic-capped hole in my stomach, but as was explained to me, I’d rather have it and not use it than need it and not have it.