So that was quick! February 3 – two months and a day following my last in-person appointment. I had a video follow up with Ryan the PA. My support team of two humans, at least two cats and at least one dog were with me via zoom via computer as I conferenced in on the app using my phone. The weather was NOT conducive to anyone being here or there in the flesh.
At the December 2 appointment (which seems like a lifetime ago), Dr. B. recommended that I experiment a little with the meds to find what Ryan calls “the sweet spot” so that I am on an even keel in regard to time without tremors. If you’ve been reading along or we’ve talked, you might remember that I found said sweet spot pretty quickly…
To recap:
1 1/2 Immediate Release Sinemet at 8:00/11:30 a.m.; 3:00/6:30 p.m.; 1/2 IR at 10:00 p.m.
1 Controlled Release Sinemet at 8:00 a.m. and 10:00 p.m.; 1/2 at 11:30 a.m. and 3:00 p.m.
1 Selegilene at 8:00 and 11:30 a.m.
…and of course there’s the dose of Valsartan at 10:00 p.m. prescribed by Dr. T. which has helped keep my blood pressure at a normal level.
So it seems to be working as best as one can hope for. But dyskenesia has been pretty intense at time some days. The pain it causes can itself cause emotions to ring high too. The more violent dyskenesias are the more exhausting they are and the more I hurt. Some days it feels like it’ll never end, and when was the last time I actually felt great? The reality is it might have just been a few hours before that when I “felt great”, but pain can make you forget that too.
Ryan suggested the addition of Amantadine which is often used to treat viral conditions like the flu, but it helps with dopamine production too. He told me that it also helps with the subsiding of dyskenesia. When the weather will allow me to safely pick up the prescription, I will start a 30 day trial of this adding it to my 8:00 a.m. regimen.
With apologies to my friend Dr. Dan Turo, I have also started some short-term chiropractic treatments in the last few weeks. (I prefer to have professional relationships before friendships and not the other way around, I’m sure Dan understands!) While this chiropractic place may be a franchise location and may not have all of the high tech gadgets, it’s clean and the relief I have felt on certain parts of my body has been remarkable. As the practice owner said to me when I went in initially, “given your neurological issues, if I can help you feel 25-30% better I will consider that a win! At least he didn’t promise me the world there! So I will continue this for a month or two more before slowing down to a “maintenance” level as this is an out of pocket expense… one I am finding well worth the money (and not a whole heck of a lot of it) for the time being.
My mood over all has been pretty good, save for frustration and occasional anxiety – both are frequently produced by the ongoing uncertainty and unpredictability of what my body is going to do or is doing at any given moment. As Lisa has called it, “body betrayal”. But one can hope with the continuing adjustment of the necessary meds, it will all work out.
Thank you for continuing to follow me on the journey.
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