This week’s episode of Thymptom Thurthday (“Invisibility and Parkinson’s”) is hereby cancelled, as I have something new to tell you about: I have the new Vyalev pump! After weeks of waiting for insurance approvals (among other things), I went to my Parkinson’s Disease (PD) Specialist’s … Continue reading Vyalev Pump: It Begins
On my most recent visit to The Parkinson’s Specialist Place, I was given a supply of Crexont, a new formulation of Levodopa. It’s an extended-release formulation, enabling me to take just three doses a day, which kicks the crap out of the six times a … Continue reading New Levodopa Formulation
A week ago, I slightly increased my Pramipexole dosage, in the hope it would address the off periods I have been experiencing lately. While there has been some improvement, I’m still not where I want to be. The anxiety and depression have been reduced over the last week, but the physical exhaustion is still as bad as ever. Worse, a fresh dose of levodopa no longer reliably vanquishes the exhaustion. So my guess is that the new levodopa pump wouldn’t help me. It may be time to add yet another different drug to my daily routine. Or maybe I should stop carrying all this Kryptonite around with me.
Several weeks ago, I mentioned the possibility of my getting a Levodopa pump system “installed” on my person. I have since decided against the pump, despite the fact I never looked at the additional information I had requested. For me, it comes down to two things:
But, as I said in the previous pump post, something has to change. And now I think I know what that is. The reason I feel like something must be changed is not because of the physical fatigue I’ve been experiencing, or any of the motor symptoms. It’s because of the anxiety and depression that come with most of my Off Periods. When this has been the case in the past, it has been successfully countered by slightly increasing my Pramipexole dosage. So, I’m increasing it from 11 pills a day to 12. After a week or so, I’ll take stock of my situation and go from there.
As for the pump, it’s still a possibility down the road. But it’s not happening until I’m so far gone that someone else is in charge of my hygiene.
When I was diagnosed with Parkinson’s Disease (PD) seven years ago, I knew virtually nothing about PD. So I started reading about it. One of the first things I read was this article, which basically says that “acute bouts” of “chronic exercise” may delay the progression of PD. So, in addition to the full-fledged workout I was already doing each day, I made an effort to engage in mini-exercise sessions throughout the day. These included things like walking up and down the office stairwell during my lunch break, rotating back and forth on my office chair during conference calls, and even doing “The Bird” periodically throughout the day (if only for a few seconds at a time). Seven years later, I still take breaks to do The Bird (though not as frequently) but I also play tug-o-war with my Great Pyrenees, and sometimes I just hop around the house like a dern fool idjut. Whether all this chronic exercise has actually delayed the progression of my PD, I can’t say. On one hand, the disease has certainly progressed; on the other hand, I feel like I’m doing better than a lot of other seven-year Parkies.
What I can say is that the acute bouts of physical activity do tend to provide short-term relief from three of the most annoying PD symptoms: fatigue, depression, and anxiety. As I’ve said before, the combination of physical fatigue and depression/anxiety can lead to feeling like I can’t even move. But as counter-intuitive as it seems in the moment, if I force myself to get up and move around a bit, I quickly feel much better – both physically and emotionally. Yet it’s so easy to succumb to the fatigue and depression; many times I have found myself just moping around, lamenting my condition, completely forgetting that all I have to do is just GET UP.
Another approach that is sometimes surprisingly effective (and which I frequently forget) is the sports drink. I find that simply drinking some PowerAde (or even Mountain Dew) is often surprisingly effective at relieving both the fatigue and the depression/anxiety. I have read that hydration and electrolytes are important for minimizing Neurogenic Orthostatic Hypotension (dizziness from standing up too fast), but I don’t think I’ve read anything about electrolytes relating to the emotional effects of PD. In my case at least, it seems there may be a link.
Voyages with Parkinson's 