Happy 2022. I hope your holiday celebrations have been wonderful, and frankly I hope they continue. There are still four days of Christmas left, you know! Then again… maybe you’re the long-lost soul who still celebrates the “40 days of Christmas” ending on February 2? Despite the longer periods of daylight, I still think of January as a “dark month”. That is particularly true in years where the winter can be brutal. This fortunately doesn’t seem to be one of those years! My pretty lights and trees have some time yet before I put them away.
Anyway, it seems I haven’t posted here in a while. In 2021, the summer was one of the hottest on record… and should I say HUMID too! It was the summer that I learned how much excessive heat and humidity really have on Parkinson’s. Initially, I was sure it was the frigid cold winters. When I was initially diagnosed in 2014, Pittsburgh was in the midst of an extraordinarily COLD winter – subzero temperatures, winds, the whole nine yards. It was brutal on me mentally, but it seemed to affect me physically too. Others I know with neurological issues looked at me like I had three heads when I would say that and were quick to point out it was summer they couldn’t stand. It took me seven years to experience that.
Still though, I will stand with my feelings that longer periods of daylight and warmer weather are far better than chilly, damp, rainy gray days.
Anyway, back to last summer…
Somewhere between the virtual visit with my neurologist in mid-March and late May, my afternoon dose seemed like it wasn’t doing its job. I’d get to 3:00, take the dose and would almost be worse after taking it than I was before. The tremor was vicious. Three days a week, 3:00 p.m. is my quitting time and I would often find it difficult to leave to drive the 1.8 mile trip home. I waited as long as I could most days attempting to get things done that didn’t require finite muscle use – that is to say typing or handwriting. As my work is now at my “second home”, the anxiety of the issue had nothing to do with where I was. Instead it had everything to do with the fear of my future and who I would call if I couldn’t get home… and why did I just buy a car if this was what was going on?
I was a sweatball more often than not. It was in large part due to the summer heat… I think. I would sit in front of a blowing fan or air conditioning vent and after some time, the tremor would settle down and I’d be fine. But one shouldn’t sit in front of such air, should they? Whatever works, right?
In mid-July I had another virtual visit with the neurology department. Dr. B. only sees me twice a year, but in between I see one of her PAs – either Jess or Ryan. My portal was open and all three of my support crew – Lisa, Annie AND Baby Red were all there. The appointment time was at 8:45 a.m. I had already showered. The AC system (brand new about two months before) was running full tilt. And my back was a soupy mess.
Ryan, who took an instant liking to Red, asked how I was and I told him. But then he saw Red and we spent a few minutes doting on her. Getting back to the matter at hand, Ryan told me about excessive humidity and how it affects the system and the disease. He also suggested crushing the Immediate Release Sinemet at 3:00 p.m. and other less effective times and consuming it with juice or soda… and then rinsing with water so the intense amount of acid didn’t erode my teeth.
Then it seemed he was required to go into the “surgery schpiel”. Deep Brain Stimulation has been touted by both of our hospital systems for quite a while now. But truth be told, it seems way too invasive for my liking. Look, I get it if you need to have an invasive procedure for live-saving issues. But this still seems like an optional procedure to me and it also seems like the success rate varies a little too much to endure being invaded.
I asked Ryan to give me the rundown of how we would determine if I was eligable. “Sure, no problem. First, the night before you would not take your nighttime dose…”
Brain interrupts, “Nope, absolutely not! Not happening. You’ll already be losing sleep and now they want to take you off the dose that helps keep you still so you can sleep?!”
“…then we see you hopefully early enough in the morning to get you back on your regular dose of meds without losing too many doses. That will give us the baseline for what we’d be working with for possible DBS surgery.”
“Ahhhh… okay, we’ll I think we’ll talk about that somewhere down the road. It seems a little bit much to take on right now,” I responded.
Ryan said, “Yeah, and you ARE still a little bit young for it from the research we have seen. But keep that in the back of your mind for the future. It can only get better.”
After Lisa left, and Annie and Red after that, I got back in the shower and dried myself under my ceiling fan. My first stop that day was Walgreens for a pill crusher. Wouldn’t you know, crus… PULVERIZING pills actually do make them work faster. But it was also a lot of effort to get them crushed when in full-on tremors. But in juice or soda, the remaining grit would stick to the sides of the cup. So I needed water anyway just to make sure I got the full dose.
Annie suggested putting the crushed supply in applesauce. Wouldn’t you know that works better than ANYTHING? Still it seemed like a lot of effort.
My next appointment was set up for December 2 and while I had asked for another follow up in between, it never happened. But nothing really improved. I still found 3:00 p.m. to be troublesome and uncomfortable most days. Even after the temperatures cooled through the fall, it was still difficult – although somewhat subdued – to get through 3:00.
Despite the ongoing and troublesome pandemic, we all agreed that I should be seen in the office on December 2.
Lisa gladly took the day off work in order to drive me to the office. The appointment time? Glad you asked – 3:20 p.m. – right in the middle of my afternoon tremor!
The office was roasty toasty. We were masked and, of course, I was seen initially by a resident. I really wish we could have opened a window, but there I was beginning to sweat again. I wasn’t nervous – well not in the “performance anxiety” way. The tremor had my full body in motion. But it was probably good that Dr. B. would see me at the worst! To give you an idea of how bad things were, on the way home the windows on my side of the car all steamed up! Lisa’s side remained clear. WHOA!
Dr. B. increased the amount of Sinemet I was allowed in a day suggesting I take 2 controlled release at night before bed; one in the morning and one mid-day. The immediate release stayed at the same level. Different amounts at different times. But then she said, “we know you well enough now that we are going to give you permission to ‘experiment’ with the doses. You figure out what you need and when.”
Given that I have never been much for taking meds, I considered the prescribed amounts the maximum per day and within a week everything was figured out. I had been taking two controlled release tablets before bed since summer. But with the one added during the day, two at night were too much. I learned about that the hard way when I woke up at 2:00 a.m. with dyskinesia so bad that I was unable to settle down for about 4 hours. Then I split the second CR tablet of the day when I noticed taking a full one at 8:00 and again at 11:30 (mixed with immediate release) caused the same situation in the afternoon.
I have since moved around the amounts of the dosings So that 4 of the 5 doses have 1.5 immediate release tablets and .5 for the fifth. The morning dose has 1 CR tablet. the next two have .5 and the night time dose has 1. The Selegiline has 1 tablet at the first two doses of the day.
This resolution is not foolproof. While I have experienced far fewer tremors of late, there is still a bit of dyskinesia and some stiffness in my neck. Yet, I can drive home from work at closing time these days. Oh, and you know what? This post is the most typing I have done in one sitting in quite some time – and most of it was during the 3:00 p.m. hour.
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