When I was diagnosed with Parkinson’s, I did consider it a “mini-gift” in the sense that it wasn’t ALS, which is what I thought for a while that I had. ALS is pretty much always fatal, and within five years of diagnosis. And what happens during those five years isn’t pretty. So it was actually a relief that the diagnosis was Parkinson’s rather than ALS. But it was just a comparative gift; Parkinson’s itself is no walk in the park. It is a progressive, neurodegenerative disorder affecting all motor functions. Including the ones we don’t often think of when we think of motor functions, like digestion and balance. And believe me, when these areas start to be affected, you know it.

And when I jumped on the internet and began to research what can happen to a person with Parkinson’s it was simply terrifyng; here’s a link to just one list of symptoms. And, since everyone who has Parkinson’s has it in their own unique way, it kind of boils down to “Any person with Parkinson’s can have any given sympton for any given duration, frequency, and intensity at any given time. Left hand tremor? It’s Parksinson’s. Got a headache? Parkinson’s again. General hard-to-describe crappy feeling that, when trying to explain to others, only manages to convince them that you’re just a slacker? Yep. Parkinson’s. All these symptoms will worsen over time, putting stress on the patient and the caregiver (if you’re lucky enough to have one).

Also, a few months after my diagnosis, I had a complete nervous breakdown and suffered through a horrible depression for six weeks; this had radical consequences for my life, family, and work, and was hands down the worst experience I have ever been through (more on this depression in a future post). So given all of this, how is Parkinson’s a gift?

Let’s reason this out. Since my diagnosis, I have incorporated regular physical exercise into my daily life. I’d made attempts to do that in my past, but these attempts only lasted a few weeks at best. I’d start running, then miss a few days, and stop. I’d join a gym, be all gung-ho about it, miss a few days, then stop. I felt ok in general, so I just wasn’t all that motivated to continue exercising. Well there’s nothing like having a progressive neurological disorder to provide motivation. From my intense internet wanderings on the topic of Parkinson’s, among all the different supplements, therapies, and advice, one item stood out as universally effective across the board at slowing the disease’s progress and providing better quality of life: exercise.

Now after two months of working with my trainer Ahmad and exercising regularly, I feel more fit than I ever have in my life. I know this may sound weird coming from someone with Parkinson’s, but it’s true. You can have a disease that gets worse while at the same time steadily increase your level of fitness (sometimes you may need to be creative with the “how” of it, but that’s where a trainer like Ahmad comes in). And, seriously, the more you exercise the more likely you are to slow the progression of Parkinson’s. Also, increased fitness has all the benefits from exercise that come into play regardless of whatever else you might have. Here’s a link to just one list of exercise’s benefits.
So: before PD diagnosis, no exercise. After diagnosis, regular exercise with the benefits of (1) helping to slow down PD (probably), and (2) all those other awesome benefits. Would I have ever started a regular exercise program if I hadn’t been motivated by having PD? Hard to say. But at 53 years old it hadn’t happened yet. I’m thinking not so much. So even though I have Parkinson’s, I’m also probably more fit than I ever was. I am also more mindful of nutrition and sleep, since those areas come heavily into play for people who have PD.

And then, there are all those cliched things you tend to hear from those who maintain that illness is a gift: more mindfulness of the present moment, gratitude for the good things we have (and there are plenty–like food, shelter, and clothing. Many people in the world don’t have these things), and a general shift in perspective about things. Maybe we don’t sweat the small stuff as much. These are cliches for a reason, which is that they are pretty much true. At least now they are, for me.

So, considering all of this, would I rather have Parkinson’s or not? Definitely not. Since I do have it, do I consider it a gift? I think for me it might be more accurate to think of it as a “teacher.” And believe me, I’m learning.

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.

But I think what excites me the most right now is that this past weekend I was able to play music with some of my musician friends. I had really been missing that. I had been drumming for about 5 years before I was diagnosed with PD. I wasn’t a great drummer, but I was good enough, and playing music live with other people is the closest I’ve come to a spiritual experience.  There’s just something magical about it.  So when I realized that yes, the PD on my right side was definitely getting in the way of my drumming, I was pretty bummed out.

I’d play once in a while and notice that it was really hard to make my right hand work and keep time.  This was a disaster!  Trying to play the drums became a stark reminder that I had a disease and that it was taking away the things I enjoyed. Or I was allowing it to take away the things I enjoyed. I could only play a couple of songs on my drum kit before I’d just get tired out.

Then, over the weekend, a musician friend invited me to a gig she was playing and I had a chance to drum for her. She only had a snare and a hand drum on hand, so that’s all I played. To my surprise, I was able to play through one and a half sets; that’s a bunch of songs, maybe ten. What made the difference was that I was playing a scaled-back percussion set-up, which it turns out I could do. This told me that I could still play music–I only needed to adapt. And, as in the case with bike riding, it’s all about still doing what we used to do. Maybe different, but still at it.

So when the bike rides to and from work started to tire me out I began to worry. Was it the Parkinson’s? Was it making me weaker? Less fit? This wasn’t good, plus it sucked. I didn’t want to drive to work. But more than that, I didn’t want to stop riding my bike. To stop riding my bike would have been a major concession to the disease and I was not willing to make this one.

So I was bummed and didn’t know what to do. One day while this was going on I was walking around downtown, and in Davis that means walking by quite a few bike shops. The bike shops put all their cool bikes out on the sidewalks, especially the cruisers, which tend to be flashier and more eye-catching than other bikes. I had just given my beloved orange cruiser to my elder son. Looking at all the cool cruisers out on the sidewald of B&L Bikeshop, and smarting from this recent development in my health, I felt both rebellious and acquisitive. Dammit, I was gonna buy me a new cruiser. Right here and now.  So I walked into the bike shop, and was drooling over the cruisers, when I noticed a few bikes that had a sign on them that read, “Try Me, I’m Electric!”  Who could resist a pitch like that?

So I tried a few out and was immediately hooked.  You pedal these bikes as you would normally, but there’s a little motor in the hub that assists you.  It’s like a giant coming out of the sky and pushing you with his hand.  Pretty cool.  And then there’s another mode you can toggle into where you don’t even pedal at all–you just go.  That’s for when I’m really tired.  Usually I pedal along with using the motor since I can use exactly the amount of pedaling resistance I want at any given time.

But I’m getting ahead of myself.  Needless to say I bought one on the spot and it has changed my life.  More on that in the next post.

Many of the exercises Ahmad comes up with address this issue. Dropping and then grabbing light weights, using rubber bands as a resistance exercise for my fingers, even hand and finger stretches. Some work and some don’t, but Ahmad keeps trying new things until we find one that works.

One of my new favorites is hitting, with a baseball bat, a tire hanging from a rafter. First of all, no one had ever showed me how to swing a baseball bat. I am 53 years old. That is just pathetic. Ahmad showed me how to use my whole body, from the waist and into the shoulders. You don’t really use your arms, they just extend into the bat. So when the bat makes contact with that tire, you feel and hear the most satisfying “THWAK!” imaginable. This exercise, besides being fun and satisfying, helps with coordination, muscle stiffness, and range of motion. PD sufferers are prone to a lot of random muscle stiffness and are often limited in their range of motion; but exercises like this give some of it back to us, if even just for a while.

And that right there is one of the most valuable lessons I learn regularly working with Ahmad: I can actually still do everything I thought I couldn’t do any more. In some form, in some way, to some degree: and I can even improve. Yeah. That’s saying a lot in the world of PD.

It took a little while, but I got it. “Now switch hands,” he said. Damn. I hate this part. But I switched hands, and I think it was even easier. I’m right-handed, so that’s the hand I started with, but it’s also the side affected by PD. Of course.

“Now switch back and forth between hands.” That’s the thing about Ahmad. Just when I think that whatever odd thing he has me doing is at its highest level of difficulty, he ups the ante. I’m convinced that he spends a good deal of his time thinking of ways to up various antes (that have to do with fitness training of course). So I tried switching hands and found that I could do that. I was starting to like this sword twirling thing. So I got to take the sword home and twirl to my heart’s content. Evil villains of the world, beware! I can twirl a rubber sword!

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,

ANYWAYS back to roaming body aches. First of all, let me just say that I’m grateful that they roam. Instead of just piling up, accumulating, until I feel like a broken down ol’ rust heap. (Okay that’s weird. I never say things like “broken down ol’ rust heap.” Has anyone else out there found themselves saying things that, prior to getting Parkinson’s, they hadn’t been likely to say? I think this is yet another underreported symptom. And add to that list “Writing Long Parentheticals.”)

Okay so the roaming body aches. Although I’m grateful that they roam, there is a frustrating aspect to the roaming, which is that it messes up trying to correlate the aches to things I think might be causing the aches. SO THAT MAYBE I COULD DO SOMETHING ABOUT IT. Take lower back pain. I’d been having it for months and it was killing me. Of course I figured it must be PD, because once you get PD you get to say that every symptom you have from now on in your life is caused by PD because it is. But I thought at least I could manage the symptom. The lower back pain was the worst in the morning, so I thought, “I know, it’s the mattress!” (I should just stop thinking. Is anyone else out there convinced that they should just stop thinking? Or that I should stop?)

Thus I entered the oddly compelling world of mattresses and mattress pads. But more on that later, if at all.

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.