Welcome to my new normal. It changes from day to day. In fact, I never know what “normal” is going to mean for me on a given day until I reach that day.
Will tomorrow be one of those “normal” days where I can walk with a modicum of difficulty? Or will it be one of those “normal” days where I can barely move and dare not go outside without my wife and my roller walker.
Will it be a “normal” day like today was? Got out of bed at 6, like normal. Took my seven pills with a glass of fiber supplement. Like normal. Rinsed out the coffee pot, dumped the grounds from the day before and poured new beans into the grinder. Just another normal morning.
Did some writing. Since retiring last March, I think I’m working harder than I was when I was working. Only now, instead of writing from the point of view of the Clinical Center at the National Institutes of Health, I am writing from my own point of view. I can write what I want, not what I have to. I'm pleased to be a writer for the Digital Journal. It gives me something to do.
Later in the morning, like normal, I got on the treadmill. My neurologist, who I love dearly, is one of those insufferable people who has lost a great deal of weight and, as a result, is enjoying health he has never known. Like anyone who has ever reformed from anything, reformed overweight people – especially doctors – like to instill others with the benefits of losing weight. Not that I disagree. Heck, I’m already 50 lbs. lighter than I was back in 2007 when I had deep brain stimulation as part of a clinical trial to see what effect it would have on people in the early stages of Parkinson’s disease.
But I’m no longer in the early stages. In fact, January 31, 2012 marks the 12th anniversary of my diagnosis. Let’s have some cake.
No, on second thought…
My neurologist wants me to lose more weight. So I got a treadmill some months ago. Odd how these things happen. Back when I got it last June, a “normal” workout was 30 minutes or at least a mile at 2.5 mph. But that was “normal” last June.
Parkinson’s is a progressive disease. That means it gets worse. Oh, the rate of progression is different for every individual with the disease; and there are 1.5 million of us in America who have it. It never gets better. It only stays the same… or gets worse.
Today, “normal” was my normal workout… 14 minutes at 2 mph, then one minute at 1.5 mph. See, as of late, “normal” means my right arm begins to shake uncontrollably when I get 5 to 6 minutes into my workout. Then, when I’m done, it’s “normal” to have to get some help to get off the treadmill and make my way back to my desk chair or my recliner. But today, we found that yesterday’s “normal” was not today’s “normal.”
When I stopped the treadmill, I could not move my legs. Freezing of gait is nothing new for me. Most people who have had Parkinson’s for awhile know what it’s like when your feet ignore the orders sent by your brain to move, to take the next step Last year, “normal” meant I’d hesitate for a few moments, then if I couldn’t get restarted on my own, my wife Gail would take my hand and that would unfreeze me. The warming touch of her love, I guess. But that was “normal “ in 2011.
As of January 25, 2012, “normal” is not being able to get off the treadmill because my legs refuse to move. Well, that’s not quite accurate. They move. But they’re shaking. My body is bouncing up and down.
My walker is right there by the treadmill. But I can’t make my hands reach out to take it. I can’t let go of the handrails on the treadmill. Gail says something to me. I look at her, but say nothing. That’s because, as of this morning, it’s “normal” for me not to be able to speak when frozen.
Gail is nothing if not a good reader of faces. She came around to the treadmill, took my hand, and that unfroze me enough to grasp the walker. But it wasn’t enough to get me walking. I stood there, bouncing. Gail put her hands over my hands and together we took step after halting step to my desk chair.
I could speak now. But typing was out of the question. So I dictated an e-mail to my neurologist to update him on the latest meaning of the word “normal.” He called me as soon as he was finished with the patient he was seeing.
By then, I was in my recliner. We discussed the situation. Rather, he listened as I stuttered and stammered and started crying. See, that’s “normal” for me now. Big, rough, tough, he-man, former Sailor, former football player, former lots of stuff. When I get emotional or frustrated, I cry. It’s “normal”. And the frustrating thing at the moment is the fact that I cannot string two understandable words together. Me, one of the original broadcasters at XM Satellite Radio with golden pipes and a gift of gab that put food on my family’s table all those years… stammering, babbling, crying.
Just a “normal” day.
Things evened out. As I rested (after struggling to hold a fork steady enough to eat some Chinese food Gail made for lunch without stabbing out my eyes), I began to feel more relaxed. I had taken an extra pill for that. That’s “normal.” Heck, on a “normal” day I take 15 pills a day. A “normal” week means I’ve taken 105 pills. Not all of them are for Parkinson’s. Some are for hypertension. A couple are to let me sleep at night without punching or kicking the walls during one of my nightly super-vivid dreams. Another one is to help me get to sleep in the first place. One is for depression. One is for stomach acid.
By the time afternoon turned to dusk, I was feeling “normal.” Gail had gone out to get something for us to eat for dinner. My neurologist called to ask how I’m feeling. At least this time I wasn’t crying.
“I guess I’m feeling… normal,” I told him.
He reminded me that the important thing at this stage of Parkinson’s is just to enjoy your life.
And I do. My God, how I do. It’s “normal” for me to be in a good mood, to be chipper and positive even when my body betrays me. It helps. So does the Zoloft.
So, like “normal” when we hit the hay tonight at 9 (I get sleepy early – I am 57 years old, you know… practically ancient. At least, it’s as old as I’ve ever been), I’ll drift off to sleep. If it’s a “normal” night I’ll wake up a few times from vivid dreams and wonder where the hell I am. Then, like “normal” it will all come rushing back and I’ll go back to sleep until I wake up again. Maybe twice or three times more, if it’s a “normal” night.
Then I’ll get up at 6 am and wonder what “normal” is going to mean for this bright, new day.
And I’ll adjust. I normally do.