is illness a gift?

I’ve never liked the idea that illness was a “gift.” You’d hear people say it–those that had the illness would say it. They might mention how they were now more likely to cherish the moment, to live more in the present. To realize what the most important things in life are, family, friends, nature, five quiet minutes with a cup of tea. Often this would be in the face of a potentially fatal disease, like cancer or ALS. And often from people who had a prognosis of 100% fatal and with six months to live. In fact there seems almost to be a ratio of how bad (and time-limited) the prognosis would be and how intensely the appreciation of life becomes. That makes sense. But to call that a gift? It rankled.

good feedback from the environment!

Today while walking at lunch my friend and coworker mentioned that I was walking faster than I had been a few weeks ago. And recently my therapist mentioned that she’d noticed that I was using my right hand a lot more than I had been (my right side is my PD side).

These things are great to hear because I don’t really notice the small, day-to-day changes; they’re gradual. So when people tell me I’m improving, it’s pretty exciting. This tells me that the exercises I’m doing with Ahmad, my trainer, guiding me are working. Improvement isn’t something you tend to hear a lot in the PD world. PD is, after all, a progressive degenerative disease. So even holding steady is pretty amazing.

And then there’s my electric bike (part 1)

Bike-riding rules. No. Really. It does. I can’t think of anything else in my life that I’ve been doing for so long and so consistently (except for breathing). I learned how to ride as a young child, and have been at it ever since. Riding my bike was freedom. I could go most places I wanted, when I wanted. I had access to friends through bike riding. I fell off a few times and learned the lesson that I could survive falling off. I went on a six-week bicycle trip when I was 15 years old that changed my life. I took my bike with me on every house move I ever went through. I began using my bike as my primary commute vehicle a couple of years ago when I began working at UC Davis, which is only about 3 1/2 miles from my house. It was pretty easy and only took about 20 minutes.

Why my trainer makes me do weird stuff

Although I plan to spend more time detailing the weird (and fun, by the way) stuff my trainer Ahmad makes me do, I thought I might mention why he makes me do them, in case you were thinking, “Okay, so this guy has a trainer who makes him do weird things. Righty–oh. Moving on . . . .” There’s a method to his madness. Take sword-twirling.

Weird stuff my trainer makes me do

“Have you ever twirled swords?”
“Huh?”
“Have you ever twirled swords?”
“What?”
“Here, let me show you.” Ahmad walked over to the wall, picked out a sword, and began twirling it. Twirling it fast. Really fast. I’d been working with Ahmad for four or five weeks and I hadn’t even noticed that he had any swords in his gym. Maybe that was because every square inch of wall space is crammed with unusual items pressed into service in the name of fitness. Swords for instance, in this case made of rubber. Rapidly twirling rubber. Ahmad was like Bruce Lee all of a sudden.
“I can’t do that.”
“Yes you can.” Ahmad will not let me get away with saying, “I can’t.” So he slowed the process of twirling way down, handed me a rubber sword, and away I went.

Je suis fatigue

Imagine being lowered into an enormous empty vat, wearing scuba gear for breathing. Now imagine that the vat is filled up with thick, oozing mud, completely covering your head and then some. Now start walking.

This is what it might feel like to have the kind of fatigue that I have felt with PD, as many others have (with other ailments as well). It’s not a feeling of sleepiness, although all you want to do is lie down. It’s more like you’ve had cotton batting injected into your veins (while trying to walk through the mud vat in your scuba gear). And then your brain turns into cotton candy. The pink kind.

According to the internet (so it’s true), one half of PD sufferers report heavy fatigue as one of their top three symptoms and one third report it as their worst symptom. I was one of that third.

Until I met Ahmad, my personal trainer and an all-round genuinely awesome guy,

Jumping ahead to today . . .

Does anyone else out there in Parkinson’sland have weird, roaming body aches? For months I’ve had lower back pain and a sore right wrist. Now those aren’t so bad and I’ve got terrible TMJ. Temporomandibular Joint Disorder. A bit of cursory research on the internet suggests some links between PD and TMJ, even a bit about a woman whose PD symptoms were greatly relieved through a TMJ treatment. I’m not even sure she had TMJ. But maybe I just wasn’t paying attention. And that’s another thing. Is anyone else’s attention span shrinking? Like when you jump quickly from topic to topic within one blog post? Yes. Well.

What a relief

Oy. As if I didn’t already have enough going on. Recently divorced, living in reduced circumstances, a job that was stressing me out, navigating through a new relationship, dad having alzheimer’s, okay that’s enough, right? Wrong. On April 28th, 2010, I finally cajoled my neurologist into saying to me, “Okay, you have Parkinson’s. We’ve been dancing around it, but there it is.”

He hadn’t wanted to tell me. Nice neurologist. But I needed to know. BECAUSE I HAD CONVINCED MYSELF THAT I HAD ALS. Really, I had. So, oddly, hearing the words that I had Parkinson’s was a relief.

But not for long.