First off before I begin, I want to thank everyone for the much-needed and appreciated support. My family and I would not be able to handle all of the everyday needs and pressures without that support. So thank you, thank you, thank you!!!!
This idea came from my mother, a saint among women, to talk about what exactly the OT tremor is like for me. So, here it goes:
I’m sure you have all seen someone with a typical Parkinson’s tremor. If you haven’t, go to you tube and watch the many videos of Michael J Fox and you will see exactly what it looks like. While I do have very slight Parkinson type tremors, these are generally consider resting tremors. Meaning when a person sits or stops, the tremor comes out and it’s a very pronounced tremor. In the very late stages of Parkinson’s patients will sometimes get stuck in one position and have trouble moving at all, or have no expression or look stone faced.
My OT tremor is very much different. It is classified as a high-frequency tremor. So what does that mean? It means that within a few seconds of standing both of my legs start with extreme vibrations, that are so fast that only if you look closely or if I have shorts on or if you happen to have a hold of me, will you be able to understand or even realize that they are present. The best way I can describe it is, imagine there is and earthquake below your feet, but you’re the only one who can feel it. As I stand longer and longer the tremor will radiate into my torso and eventually everywhere. If I lean against a wall or post it takes some of the tremor away from my legs, but adds it to my upper body or arms.
So what to do? If I sit down, they stop almost immediately. I say almost because it depends on how long I have been attempting to stand. If I start walking or moving or evening fidgeting around it will release some of the tremor. Some people who see me in public will notice or comment that it almost looks like I’m dancing to my own music, because I just can not stand still.
But wait there’s more. OT causes extreme problems, at least for me with balance. For some people out there, they have real fear of being somewhere with no visible seat in site, this will cause an extreme fear of falling. For me, thanks to physical therapy, I am strong enough to know that as long as I can keep moving I’ll be fine. I may run into a few things while I’m at it, but I’m strong enough to keep myself upright. The fear comes into play for me when I’m in the shower. Something about the eyes being closed, the water running down and the tight spaces does require me, a 40-year-old relatively otherwise healthy man to have a shower chair.
Lastly, while I am stronger now than in September when I was diagnosed officially with OT and can stand or walk much longer than before, the mere fact of “holding” myself up can cause extreme fatigue or exhaustion. For you standing still in the same spot for 5 minutes may seem like nothing, for me I have to focus and use every muscle in my body to remain upright. That’s what the core exercise in physical therapy have help me with and also a 25 pound weight loss.
I know this is long-winded, but I could truly go on and on about this illness that has taken away my ability to control my own body. I learn something new about it everyday and hopefully this will enlighten you, my supporters.
Please continue to share these blogs and send comments to me however you feel comfortable. I love the feedback. This is my new life and I have decided to share it all with you.
Thank you so much for reading, have an awesome rest of your day and as always God bless,