[Editor’s Note: Please join us in welcoming Gavin Mogan of Your Move Fitness as a contributing author.]
I informally call this ridiculous little road show, Carbidopa Laughadopa: repurposing PD symptoms to treat other symptoms. If it feels a bit odd as you read it, that is intentional as this originated as speech/monologue.
Someone once told me that laughter was the best medicine. I think it was the claims reviewer at my health insurance provider. I realize this is by no means the only application for this concept, but thanks to carbidopa/laughadopa therapy, I can repurpose so many of my Parkinson’s symptoms to treat other symptoms, that the worse my PD gets, the better I feel.
- ‘Off’ time can be repurposed as meditation time.
- Soft voices give an excuse to shift attention and become better listeners.
- Loss of smell/taste can be useful, if not absolutely essential, in eating healthier.
- Periods of freezing can be research/self-analysis of how fear holds us back in other areas of life.
None of us chose PD, but we can choose ways we respond and adapt to it. Pursuit of interests, passions, and new experiences provide me awareness of beauty and joy all around. I never would’ve expected I’d be here doing this. But PD has opened my mind to anything.
Everything that happened to me up until now doesn’t matter anymore. Here, now, is actually the only life I’ll truly ever have. I try to live earnestly, but not too seriously.
I think maybe the funniest thing I could do today would be to go around the room and get your names, then try to repeat them all back to you. But, I’m not gonna do that.
Instead, I’m gonna try to remember a bunch of jokes and stories that show that while we may not know each other’s names, we actually do know each other like family.
When did remembering names get so hard?
Those fancy-tasking little punks and their shiny, non-deteriorating hippocampuses….
I’d love for one of those multi-tasking punks to challenge me to a single-tasking duel. An ice cream eating contest would be good.
What the hell is it with me and ice cream?
I have never in my life been so passionate about ice cream – not even as a little kid.
Honestly, it’s easier for me to eat a ½ gallon of Butter Pecan than to remember the name of the guy whose house I am at, inhaling all his ice cream.
What’s going on with my handwriting? One benefit is at least is that it used to be challenging to make two hundred fifty and 33/100s fit in the written-out amount out on my check, but now I do it with room to spare. I try to see opportunity.
It cracks me up that handwriting is actually sometimes a consideration in a PD diagnosis. Does the doctor submit our writing sample down to the lab? Does the lab receive one of those biohazard bags with our handwriting and start analyzing it with their tiny diagnostic tape measures?
Pretty cool, though, that’s almost like a cured symptom since we hardly ever use handwriting anymore. Can’t quite take that one off the list of symptoms yet, but sure beats being a calligrapher and coming down with PD.
What other jobs can we pretty much cross off our list? Food critic? Tightrope walker? Comedian? Neurosurgeon, for sure.
There’s a lot I’d never be able to understand about being a doctor anyway. What do they get out of watching all that foot and finger-tapping, fist clenching… when do I ever do those things outside the neurologist’s office? And yanking me from behind? All those tests seem so primitive with today’s technology.
Are these tests a big part of the neurology course in medical school? Lots of film study on what is and what isn’t quality tapping? Do I score that fist clench a 4 or a 5??? Crap, he said this is definitely on the test!
And in today’s me-too environment, should the neurologist really just be watching us walk up and down the hall and back? I’m kind-of uncomfortable with this.
Love & Marriage
I could be wrong about all this. I do make a few more mistakes than I used to. So naturally, I get blamed a lot more.
At my house, they all automatically assume Dad forgot to lock the door; Dad must have eaten the whole carton of ice cream last night after we all went to bed. Dad must have tracked in that poo on the floor leading straight to the liquor cabinet. Always Dad to blame.
But they’re angels, aren’t they? Our care partner, life partner, howdy partner, I’m not really sure of the proper title, they can’t be thanked enough.
We’re so fortunate that they never tire of hearing about PD, or of our whining about PD, or our hearing about some wine that’s supposedly good for PD. PD wine enthusiast says this malbec will knock 2 points off my UPDRS, I just had to try it.
Amy wondered how they get rats with PD for these studies…does anyone actually know? My guess was, well, hit a few support groups for rats with PD and you’re off to a good start.
Imagine those poor rats…there to support each other in the fight of their lives. There’s no safety net in rat society for rats that fall through the cracks. At least not that I’m aware of.
But those little suckers do have far more job opportunities than we do! They’re being hired left and right.
I would love to sit in on the interview process for the lab rat job…the negotiations over cheese, running wheels, maze design, and health care coverage. I’ll bet pre-existing condition legislation was huge for them!
What’s ideal treatment for PD? Exercise.
Not just exercise, but high intensity exercise.
It’s been reported that as many 60% of us have apathy as a symptom of Parkinson’s. About the only thing we’re doing at high intensity is swallowing pills. Or maybe pushing out a bowel movement. Can that suffice as our exercise requirement? Probably not, even though some days, it certainly feels like it should.
Even when ready to start getting some exercise, we can be overwhelmed with questions about appropriate exercise. Is it strenuous, but not too strenuous? Is it cognitively stimulating? Do we look more ridiculous in the bicycle shorts or yoga pants?
It can be pretty hard to exercise when you’re not getting any sleep though.
Anybody else ever wake up during the night, where you know pretty quickly that you’re not going back to sleep? You start to wonder what time it is…
I always like to take a few seconds and observe my symptoms as I lay there. Then I can take a pretty good guess at what time it is.
It’s crazy how we can learn to function on so little sleep. Anyone else here get the crippling afternoon fatigue? Ever had it happen while driving?
That could be the toughest PD battle of all. Fighting that wave of fatigue while barreling down Interstate 35…It’s 30-something degrees and you’ve got your window down…music blaring…guzzling water to try to swell your bladder…
I think I scared some people last time I told those jokes. Nobody left the parking lot until my car was long out of sight.
Behind the Wheel
I was training a client recently at the tennis court. In the middle of hitting balls she started cracking up, then doubled over in laughter. I couldn’t figure out what could possibly be that funny. She said she caught a glimpse of how she’d parked her car in the lot.
There were like 7 or 8 cars in that lot. It was a no-brainer which two cars were parked by people with PD.
I have a theory that we park in alignment with our posture.
Anyone else hear a car horn and now just automatically assume it’s directed at you? What am I doing now?
Okay, I veered into your lane for second. I had a power nap go a little long waiting for the green light. I get it, I left my coffee mug on the roof of the car…and my glasses…shit, my phone too, really???
Deep Brain Stimulation
My brain is…interesting. I’m not really sure what’s happening up there. After DBS, I could no longer get an MRI. So, no more pulling back the curtain on my brain.
That’s comforting to my brain, which I have no doubt just lays around without pants most of the time. In fact, I’m pretty sure that’s what it’s doing right now. And I’m cool with that. A chill brain means a chill me.
Pre-DBS, I envisioned being the life of the party with DBS. Turning my device off and on as people watched in shock and awe…
That’s not really how it’s turned out. There is an on/off distinction, but it’s much less dramatic.
So I’ve had to come up with other party tricks, like an ability to doze-off mid-sentence, or to disappear completely undetected when feeling symptoms come on. My favorite is probably, “Hey everyone gather ’round Gavin. We’re gonna see if he can remember even one person’s name.”
I freeze from time to time, so I thought about getting those laser shoes. Have you seen those? They seem like a kind of a party trick. They act as a visual cue for taking steps. But wouldn’t all the cats jumping out in front of you sort of defeat the purpose of the laser-pointer shoes? Guess that would add to the spectacle for party purposes though.
Social interactions are hard, man. Any of you ever faked symptoms, or at least exaggerated them to get out of doing something? Yea, me neither!
Hey, 10 years in, I’ve earned the right to play my PD card from time-to-time! At 10 years you also get access to better cusswords, and the right to use them more frequently. Trust me, it helps.
Anybody have any good cuss words they use to treat symptoms that they’d like to share? No consequences…this is a safe zone…just release the tension…
I also tell it like it is – no holding back. I have less fear of what people might think. I already have Parkinson’s, what else do I have to lose???
One thing I am sure of, we have got to have each other’s backs.
How do you handle it in public when you see another person with a resting tremor similar to yours? You want to relate with that person, right? Offer support…
What our community needs is a secret handshake.
Hold it… most of us already have a secret…hand…shake… so I see my error now. So, yea, we need the opposite of what I just said we need – we need to eradicate our secret hand shake!
I’m fortunate in that through medication, exercise, and DBS, I have quality ‘on-time’. I recently had a lady kind of grilling me on my PD details. I think she thought I was pretending to have PD for immunity in telling jokes about PD. She was ready to call me out…report me to the PD police.
Diet and nutrition is fun too. Here’s a typical example when some community members want to bond over lunch together: “Let’s see, can’t be too meaty, too wheaty, too carby, too fatty, too sugary, too spicy, too dry, or have too much protein. Preferably organic.” After discussion and negotiation, we end up eating Tex-Mex.
Laughter is the soul’s nourishment. I like mine spicy, please.
It’s actually the best medicine too (especially after the Vicodin kicks in).
I think Merck still holds the rights to laughter, though. Ask your doctor if a generic is available, just to be sure. Don’t operate heavy machinery while on laughter.
And if your laughter lasts for more than four hours…well, for God’s sake where were you when I gave this presentation in Shreveport???