I had a telehealth visit with the movement specialist this afternoon. I find that I prefer telehealth as much as possible. They tend to stress me less than in-office appointments, the last couple of which have been during cold snaps in Pittsburgh. That means the heat is likely on in the Neurology office and I have no control over the thermostat, the air tends to be toasty and stagnant and I get so hot I perspire. That exacerbates the tremors, dyskinesia, and dystonia – the unHoly Trinity of symptoms.
Lately, Dystonia has been rearing its ugly self – usually in the morning, and mostly on my left side. Some days the toes on my left foot fan out making it feel like I’m stretching them horizontally as wide as I can. Some days all 10 toes fan. It actually feels kind of nice… for a minute or so. Then it’s not so fun.
The second level is when my left hand stretches as if I am closing my fingers into a fist. But it usually keeps my fingers straight out and stiff stopping when the pinky is 70 degrees downward at its bottom knuckle; my ring finger is a few degrees higher and my other three fingers remain in place. The pain is tolerable, but still not fun.
Level three is the “cervical” dyskinesia where my neck stiffens on the left side and I feel the stiffness down to my shoulder and upper chest. On really bad mornings this will pull my head to the left as tightly as it can an even pull at the bottom of my jaw. I feel like a Picasso painting looks.
If I can beat it with the medication dose I can control it. If I don’t, it usually clears up in about twenty minutes post pill swallow. But lying flat on my back on a sturdy surface – meaning not a bed or sofa; usually the floor – for as little as 30 seconds fixes this up. But what if I am lying down when it happens? Then I sit up or even stand up. Sometimes kneeling next to the bed handles it. In this case, it truly is a situation of whatever works… as I frankly don’t care to be in pain nor do I care if it looks silly. It can’t be any worse than looking like a Picasso.
Today the doctor suggested a little alteration to my nighttime dose should help this and we’ll keep working on it. Stay tuned.
If you haven’t heard already, April is Parkinson’s Disease Awareness Month. So be aware!
I have nothing special planned for how to celebrate the awareness month this year. The Parkinson Foundation of Western PA has their annual day-long seminar this month along with several other offerings as they do. I am sure we will see all kinds of campaigns throughout the month. I have found, however, I’d rather focus on living life and keep doing what I can to keep working in spite of pain and stiffness. But I am also willing to help those who are new to a similar journey.
Incidentally, I was honored when I was recently approached by a fellow radio man who, himself had been diagnosed with PD this past fall. It was an honor to sit down and discuss the similarities and differences between our respective diagnoses.
Please let me know if I can help you… I’ve been dealing with this for a decade now and am ready and willing if you need me!
Peace!
1 comment
Bless you for being so open about this. I have known several people with Parkinson’s and they stayed home, didn’t discuss it and their families suffered tremendously. You keep living life to the fullest you can and are a true inspiration.