In this entry, I would like to reveal to you the way my Parkinson’s Disease affects me personally, when in the “trough” of the cycle or at times when some may consider I'm in an under-medicated state. Now, it is very important to realize that “Parkinson’s Disease” is a catch-all term for many movement disorders, and everyone may be touched by it in different ways and have different responses. We usually say that someone has a “Parkinsonism” to highlight this. Also, I have the "Early Onset" form (diagnosed in my late thirties), like Michael J. Fox, who is perhaps the most famous person who was diagnosed at a young age.
Nevertheless, I do think it is still extremely important to talk about this self-study on just one Person with Parkinson's (me) and the research which Deb Helfrich and I are pursuing, through applied scientific methodology and astute awareness. Our major reason for sharing is because of the potential that these posts might help someone else out there. We also seek to raise awareness of just how many people are directly or indirectly affected by these disorders in their life.
So back to me. The way my "–ism" affects me when the medication runs low is a state of Bradykinesia in which my muscles are extremely stiff and the signals between brain and body do not appear to work – I find it very hard to move my arms and legs and other muscles. It is not that the muscles are just "tired", it is literally that it’s very hard to get any signal to move going. The worst part of it for me is in my shoulders. Imagine crunching up the muscles in your shoulders as hard as you can – and then being stuck like that for hours.
So Deb and I put our thinking caps on and are looking very hard at not only how I am moving, but also how I am feeling. We have now between us come up with a number of ways in which we have simply re-thought how to do various tasks while suffering from Bradykinesia. In other words, we have discovered ways in which movement is easier than just trying to go through motions in the same way that I did before Parkinson’s.
The video you are about to see was made some days ago, a day or so after the first one on Dyskinesia. Since then we have furthered these ideas and have come up with some remarkable solutions. Indeed, I am now, unless in a very deep trough of Bradykinesia or very tired, able to “fool” many of the classic diagnostic tests for Parkinson’s… I will talk about these in due course.
Now for the very important caveats: this is not a cure. And this is not “easy” in any sense that someone without Parkinson’s would think of in terms of movement. When I use words like “easy” in the video, it is all comparative to my own condition. Moving around still requires a significant amount of conscious effort.
But the overall trend seems to be that it is getting a little easier day-by-day and there is potential here, we feel. Not least, this has given me a huge confidence boost in my ability to be independent for longer.
By the way, the Bradykinesia also affects the muscles in my face. This is what can cause sufferer’s speech issues. Throughout the video it can appear as if I’m not doing the talking, especially at the beginning, because of the lack of lip/facial movement [the beard does not help!], but I can assure you this diary entry was made unscripted and with just one take.