An interview with a tremor

Mark: So what should I call you? Mr. Tremor? Trey: I like the name Trey, sort of after Trey Anastasio, who was the guitarist for the band Phish. I know your son Michael, also a great guitarist, spent part of his youth chasing down his concerts. Mark: OK. Trey works, but how do you know that stuff about my son? Trey: Remember Mark, I live in your brain, and have been there a lot longer than you think. What else would you like to know? Mark: Let’s not go there, Trey. Maybe we’ll chat some more after we’re done with the interview. Trey: Works for me. By the way, I try to keep everything I learn in your brain confidential. Mark: Much appreciated. Let’s move on. It’s been more than two years since, on my 71st birthday in fact, that I heard the words “I think you have Parkinson’s disease” from the friendly but clearly apologetic neurologist. So my five year so called “honeymoon period” is half over. I had been expecting a diagnosis of essential tremor, which is what I thought I had for at least a year or two. It sure teaches you that you shouldn’t be your own doctor. That said, I was lucky to see my amazing family doctor within a week during the pandemic, and my community neurologist a week later. But I won’t get started on wait times and doctor shortages. Suffice it to say I am glad that I was a doctor. I’ve heard of friends waiting for months and months to see a neurologist.” Trey: Don’t be so hard on yourself, Mark. A resting tremor, which I understand you were taught about in medical school by the renowned Dr. Oleh Hornykiewicz, would have been more typical of PD. But people with PD can also have an intention tremor, or a kinetic tremor, both of which are types of action tremors. I see you now have both a resting and action tremor. You know, up to 30% of PD patients never have a tremor. Consider yourself a bit lucky, in that those who are tremor predominant have less likelihood of developing dementia. Even seasoned neurologists can struggle with figuring out tremors sometimes. A clue or two. Essential tremor is usually symmetrical and isn’t associated with the stiffness and slowness of PD. And ET, not the alien from the Spielberg movie, more often has a genetic component or positive family history. A gin and tonic might be helpful as well. Too complicated for you, Mark? I can email you some good references. Mark: Thanks for your words of encouragement. No, I follow you, and I wish I would have known that sooner. I can remember giving travel lectures before my diagnosis and retirement. I would use that cool red laser pointer and I would be zigging and zagging all over the place. I thought it was my nerves. Trey: Well you’re right about that, Marko. Stress, anxiety, a.k.a. your nerves will aggravate an essential tremor or one related to Parkinson’s. Sort of a vicious cycle, isn’t it. PD is associated with anxiety (and depression) and anxiety worsens the tremor of PD. Mark: You’ve got that right, Trey. I just have to allow certain thoughts to enter my brain and my right hand is off to the races. Makes me think about the recent president who claimed he could declassify secret documents just with his mind. Having said that, it can also shake when I’m at my most relaxed, like during a yoga class or just watching a movie with my grandkids.” Trey: Just curious. Have you found anything that can “turn off” your tremor? Mark: I tried Cabernet Sauvignon, CBD oil, marjoram tea and flavinoids, but none of them helped. Sometimes just turning over my hand, or scratching my chin will work. Medication, I mean meditation, sometimes helps, but paradoxically, it can be when I’m at my most relaxed that my rhythm section kicks in, as I said before. And then I can always clasp my fingers together or flee to the safety of my pocket! I suppose I should be thankful my tremor, that is you, only affects my right hand. By the way, how’d you decide which side you’d attack first? Trey: Be patient, Mark. I’ll get to your left hand sooner than you think. Check closely. I might already be there. But let me ask you, if I can briefly be the interviewer. I’ve watched you play squash and piano. How do you manage that, in spite of my best efforts? I love everything by Cole Porter! Mark: Well, Trey, I think, at least for now, that doing something purposeful, can override your intention to be a disabling tremor. Yes, I can be seen shaking between squash volleys, but I don’t think you affect my swing, or my ability to play an A flat7th#11th jazz voicing on the ivories. In fact, I entertain retirement home residents every week with my renditions of Fly Me to the Moon, Misty, and Some Other Time, by the great Bill Evans, another favourite. They think I’m pretty good! Trey: That’s great to hear Mark. I am glad you’re keeping busy and involved, and fit. I hear that exercise is in fact the best thing for Parkinson’s. Mark: No doubt, Trey. Exercise, whether it’s boxing, dancing, yoga, ping pong, or plain old walking, is said to be the only thing that actually slows down the inexorable progression of PD. The studies on pickleball are not yet in, but I think they will be encouraging. I imagine it’s more than just the exercise itself. Having somewhere to go, socializing, challenging oneself, having a laugh or two must be good for almost anything that ails us. Trey: Absolutely Mark. And I don’t begrudge people trying to improve their life in the face of this chronic, degenerative disorder lacking a definitive cause, a diagnostic marker, a disease modifying treatment or a cure. Mark: “Trey, that was a pretty profound, but accurate statement. Thanks. Let me change direction. As you probably know, Parkinson’s disease was first described by Dr. James Parkinson, a British surgeon, in 1817, more than 200 years ago. To quote his description, “an involuntary tremulous motion, with lessened muscular power, in parts not in action, with a propensity to bend the trunk forwards, and to pass from a walking to a running pace: the senses and intellects being uninjured. The agitation continues in full force whilst the limb is at rest and unemployed. Of late years the action of the bowels had been very much retarded.” I can sure relate to the unemployed limb and the retarded bowels. But I think the good doctor missed out on most of the non-motor symptoms of PD, especially the “senses and intellects.” Trey: Ahh, those non-motor symptoms! I try to downplay those. I’m just the tremor guy. Mark: Not surprised. Most people identify Parkinson’s with a tremor. But when you actually ask PD patients to identify their greatest concerns, it turns out to be fatigue, anxiety, depression, sleep disorders, constipation, overactive bladder, hallucinations, falling, pain, drooling or dementia. Loss of sense of smell and an arm swing . . . not so critical. I could go on and on. And not everyone actually has a tremor. Trey: Yes, I mentioned that, and point well taken. I realize that Dr. Parkinson was a little bit premature with his description. Are you suggesting PD be classified as a psychiatric disorder with a tremor and stiffness, or constipation with a shuffle? Mark: Well I might not go that far, Trey. Difficult to rebrand a disease, and probably very expensive. But I would like people, including doctors, to know that PD is much more than a movement disorder. I think the other point worth emphasizing is that many of the symptoms I mentioned can predate the typical motor symptoms of PD. Mine sure as hell did. Maybe some day we’ll have a decent screening test or diagnostic marker. But that will help mainly if we have a treatment that can alter or halt the course of the disease. By the way, who’s doing the interviewing here? Trey: You are Mark. Ask me anything. Mark: Well in spite of the fact that he is a threat to your livelihood, what do you think about Michael J. Fox? Trey: I loved him in Family Ties, and especially Back to the Future. And you should see his latest documentary, Still. Do you have Apple TV? I hear he developed symptoms when he was just 29, just a twitch in his baby finger. I wasn’t around back then. He managed to conceal his symptoms for about a decade. Not unusual, especially for those who develop their PD at a younger age. Around 10% of PD sufferers are diagnosed under the age of 50. Probably a bit more genetics involved, and they can face different problems than older guys like you, considering they may be in the middle of raising a family and pursuing a career. I can’t think of anyone else who has been as critical or crucial as the face of a serious disease. His foundation has raised more than a $1 billion for PD research. Do you know where the J in Michael J. Fox came from? Mark: I do! Borrowed from Michael J. Pollard, the sidekick in Bonnie and Clyde! Anyway, I’m glad you feel that way. I saw him speak in person last year. He was a symphony of tremors and dyskinesias and difficult speech, but his impact was tremendous, and his sense of humour and timing unforgettable. And I did see Still on my Michael’s Apple TV. I found that my tremor would act up in sympathy and unison with Michael J.’s. I particularly like this quote from one of his books,“As a result of the lack of dopamine, the brain’s owner (in this case me) is no longer the final authority over the movement of his body. Like a car without oil, a brain without dopamine is going to slowly but inevitably break down.” Trey: What a great description! I think his first book was called No Time Like The Future. I’ll download it to my iPhone. Just thinking, you must find it challenging hitting the right keys on your various devices. Mark: How true. Lots of unintended double and triple letters. Last week, when paying a restaurant bill at the table I accidentally added a 118% tip! Thankfully the observant server caught my mistake. Which brings me to my last question, which you forgot to answer before. I’m right handed, though when it comes to baseball I’m a switch hitter. You could‘ve been a bit kinder and started on my left side for the first few years. Why not? Trey: Another great question, Mark. I can see why you’re a bit pissed off. But you’re not alone. The majority of righties are affected first on their right side. Maybe a case of having depleted that side’s supply of dopamine over all those years of extra usage. Don’t quote me on that! Had it been up to me, I would have started on your left. Mark: Makes sense. Thanks Trey. Well, it’s been great getting to know you better. I hope we can chat again. Maybe next time you can tell me how you feel about deep brain surgery and focused ultrasound. Right now, I’ve got to get ready for the Blue Jays game. They’re adding Jose Batista to their Level of Excellence today. Trey: Oh ya, the bat flipping guy. Should be fun. Mind if I watch it with you? Mark: No problem. Just pull up an armrest!

An interview with a tremor

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