SOMATIC DOLDRUMS
/Living with Parkinson’s disease is an interesting proposition. No two people with PD experience the same array of symptoms, but I think I can safely generalize that it’s no longer possible for any of us to take movement for granted. How you do something, when you do it, how long it takes—we get to rearrange our priorities. We receive constant reminders about the present moment.
I’m grateful for many things about it my situation. Grateful for my lifelong interest in body awareness, which helps me manage the postural distortion that is common with PD. Grateful that PD didn’t enter my life until I was already old. Which means I don’t have to spend decades cultivating patience. Being older also means that it’s easier to let go of aspirations, because I no longer passionately desire foreign travel or love affairs or culinary extravaganzas. (Not that I would turn down enticing offers—it’s just that initiating things is taxing.)
Move it or lose it.
Early on I had read about John Pepper, a man in South Africa who has managed his Parkinson’s for years through intense exercise. Being someone who avoids the standard medical approach to things I decided I’d do that too. Being a life-long mover, no one had to convince me of the truth of “move it or lose it.” I danced, I practiced yoga, I took up boxing and walked many miles. I told myself I could tolerate the tremor if I could just manage not to get worse. Research suggested that high intensity exercise could promise that. (By the way, not everyone with PD has tremor.)
But I was getting worse…
This manifested as extreme fatigue, at least that’s how I experienced it. I’d workout hard in my boxing class—plenty of energy for that—and spend the rest of the day in bed. I tried not boxing, but missing out on the aerobics made me almost as lethargic as taking the classes. The thought of teaching another online workshop (which I’d done happily and successfully in the first part of 2021) made me seek solace in streaming—British detective shows, my genre of choice.
At last I swallowed my pride (I can do this all on my own!) and consulted a neurologist.
It’s a dopamine problem.
For us PDers, dopamine is in meager supply. It turns out that I had been using up my allotment doing all that exercise. What was beneficial in the long run (retarding progression) was, in the short run, slowing me way down. So what I experienced as ordinary muscular fatigue was actually a chemical deficiency in my brain.
The solution—at this point I was ready to go medical— was a tiny dose of dopamine.
Living with Pharmaceuticals
Instant relief. No longer dragging my spirit around like a bulky suitcase. All the household chores that had become increasingly draining (doing dishes, making the bed, feeding Sensei and Pearl) were back to being ordinary. And I can enjoy whaling away on my heavy bag with only a short rest afterwards. The tremor is unabated (for now) but really, that’s not the worst part of PD. The worst is watching your creativity circle the drain.
If you had scurvy, a Vitamin C deficiency, you’d certainly take Vitamin C. The same logic applies to dopamine replacement. PD involves a deficiency in the brain’s ability to generate dopamine, so even though the cause of that deficiency is not yet understood, it’s only logical that you’d want to give your brain what it needs. Besides my prideful can-do attitude, my reason for avoiding medicine to this point was fear of side-effects.
Dread of Dyskinesia
The medical/pharmaceutical world is band-aid oriented. Dopamine drugs do nothing to reverse the disease, they only minimize the symptoms. PD is, at present, a progressive disease so the need for symptomatic relief progresses too. I was especially fearful of dyskinesia, the side-to-side wavering you see in Michael J. Fox (bless his soul!). The writhing is not his PD, it’s the side-effect of too much dopamine replacement. I’d love to avoid this. What to do?
I started searching. I got lucky. I found Dr. Laurie Mishley, a naturopath who has dedicated her career to helping people manage Parkinson’s. (It’s her analogy between scurvy and PD that I mentioned above.) I quickly made an appointment (flying to Seattle in September) and signed on to her “PD School” webinar series. I’m now armed with information about what type of diet is associated with slowing progression; what specific nutrients/supplements are missing for people with PD; how to time my dopamine dosage to make it more effective; how to keep it from making me nauseous; and how to avoid the dreaded dyskinesia.
Surrender
The wind seems to be picking up, letting me navigate out of the doldrums —I think.
PD makes you humble about your possibilities. Which is a fine way to think about life anyway.
Elucidate your dreams
Sincerely do the work needed to fulfill them
Release outcomes to the Consciousness beyond oneself
For decades I thought I understood this process. But having PD has taken my understanding several notches deeper. I’m grateful.
© 2021 Mary Bond