Medical Update(s)
This is really fitting as I’m going to spend part of my Sunday getting shorts at the drug store. Picking back through things from 2016, and saw the prompt about my first trip to Georgetown to see if they might have an MS study that might be appropriate for me.
No, the doctor I saw was pretty-well convinced that what I was on, Tysabri, was probably the best choice for me.
I ended up being on Tysabri until a positive JCV antibody test made me go to Keysimpta.
You know, I think the Keysimpta has opened up many parts of life that’d been sealed-off while I was on Tysabri. Though the energy crash coming towards the end of the Tysabri dose had largely abated, I did notice that things would still get a little weirder when I was due a dose.
I will say that I don’t miss the weirdness surrounding infusion sessions. Some of the other more-common treatments are even longer infusions. It actually looked, however, that some of the insurance companies were getting to the point where they’d send a nurse out to give the infusions at home; I actually could probably have worked through my infusions.
My MRI results have basically been steady for a few years. My vision is a bit worse, as is my concentration. There are things from the list of cognitive changes related to the disease.
- Process incoming information
This is something that I’ve had trouble with for a while. It’s not gotten significantly worse, but I just miss things. Oh! How the heck did I miss that?
- Focus, maintain, and shift attention
This is a real problem if I’m in a situation where I need to move around a lot. Am I going to be able to make it to the bathroom quickly enough that I don’t have an accident?
- Act on information
Very much related to the first point. If I don’t notice something coming in, my reaction to it is delayed. I think if I hear something important, I can still react correctly, but the speed is retarded due to my other physical maladies.
- Find words
I don’t know? I’ve always spoken slowly, and really try to be courteous when having a conversation. I know that there’s thoughts that’ll come across my mind in conversation that I never say. This has both positives and negatives; is it disease-related? Maybe.
I do take notes. This has previously gotten me in trouble when I wrote down something that wasn’t supposed to be recorded. I’m sure the automatic transcription of meetings is really something that’s come back to bite people. I’ve heard that there’s managers who are explicitly directing that those features be turned off in tools like MS Teams and Slack.
What have you said you don’t want anyone to know, boss? (And that response shows part of why my responses are delayed. I probably think that immediately, but wouldn’t say it aloud.)
- Relate visual information to others
Real problem since I just miss things.
- Perform calculations
I don’t know how much of this is MS, or just age. Quickly figure out how to calculate a tip? Um. Let me pull up the calculator on my phone. But that, too, is a part of the out-of-control tipping you might see in many retail locations, now. No, I bought a bottle of Coke. It already costs a lot more than it did just a couple of years ago. You don’t get 25% for running it over the scanner, and asking if I want a receipt.
Though, physically, I’m trying to improve my day-to-day life through diet and exercise, I am declining. Again, I’m not sure how much of that is MS or age. But I do recognize that things aren’t going to get better. There is no cure for this damned disease. Hell, they don’t even know what causes it.
I did get the bifocals prescription my last visit to the optometrist. Yes, they want to sell me the fancy glasses that have the reading glasses built-in. I’ve not bought those, yet. Again, it’s on account of not having money to spend willy-nilly with the disability situation.
Last roti-rooter was less-concerning than some of the past ones. I don’t have to have another colonoscopy until I’m 50. The ones I had starting before I even turned 40 were enough. This is one of the things that come along with having a parent who died during cancer surgery before 60.
Do I make it to 65? Who knows.