Everything I Didn’t Know
That's my Grandpa with his wonderful smile. He had Parkinson’s Disease. Although all the available medical science told me that our genetic link had nothing to do with my own diagnosis some 10 years after he died, it remains a frustrating coincidence. My grandfather could have done nothing to prevent my current reality, of course. When I was first diagnosed, I was somewhat surprised and amazed at how little I knew factually about PD, despite spending time with him. Like most people, I really just thought of PD as old people with shaky hands. Even while watching Michael J. Fox, whom I’d had a crush on since “Family Ties," I really only saw tremor, and if I thought more about it, maybe some slowness. Five years into my journey I now know so much more. I hope what I've learned will help you too.
The four classic symptoms of PD I first displayed were:
Tremor – usually occurring in the limbs while at rest. In my case, I had an attention tremor, meaning when I went to point or reach or grab something I would start to shake.
Rigidity – I thought I was stiff because I spend my life on airplanes and sleeping on crappy hotel mattresses. Only years later did a friend tell me he had wondered why I was walking like a robot.
Slowness – or bradykinesia, if you want to be fancy. For me this is one of the most frightening symptoms, and one of the things that convinced me to see a doctor. I would sit at the dinner table and reach for a water glass, and realize I was moving in slow motion, and that I could not physically make my arm move faster.
Balance or gait issues – still my worst symptom, and the one least controllable with meds or therapy. At the time of my diagnosis I would find myself walking along and suddenly be thrown off balance because my foot would miss the message to move, and remain in place like it was glued down, while momentum carried the rest of my body forward.
I often describe the feeling of these strange symptoms as your mind and your brain having a fight. Your mind is the conscious thought that can override the brain’s largely unconscious execution of most bodily movements. In a person having normal production of the brain chemical dopamine, if you decide in your mind to walk down the hall, you don’t really notice that your brain kicks in, walking you to your destination. And if you decide mid-way to turn around and go upstairs, you can instantly make the shift. But for someone with PD, often my mind commands, "Let's go walk into the kitchen," but my brain replies, "yeah, not gonna happen." The other tricky bit is that every person experiences these symptoms differently, and in different ratios. And from day to day, hour to hour, that mix can change. Because dopamine is the brain chemical that controls PD, by the time you have symptoms bad enough to be diagnosed, typically 80% or more of your dopamine production is lost. Despite the fact that you can still produce some dopamine, it is at an inconsistent and unpredictable rate, which makes planning your meds an educated guess, at best. And about the meds. I take a cocktail of prescriptions six times a day. I’m lucky to be on the less-effective medications, and still at relatively moderate doses. The most traditional medication used to treat Parkinson’s is Levodopa, and it’s very effective. But you can quickly build up a tolerance, which requires you to increase your dosage. That, in turn, can start to cause dyskinesias, or involuntary muscle movements, which can then become as disabling as the bradykinesia. Most people don't know that none of the relatively few drugs prescribed for PD have any impact on the disease itself. So far, we can only treat symptoms. The one thing that does seem to slow progression is exercise, which is free and has no negative side effects! Sleep, good nutrition, and adequate hydration all help too, and really, we should all be doing that anyway. There’s also a host of lesser, but super-annoying symptoms. They can occur simultaneously, intermittently, or even as early warning signals that are easily ignored. Your sense of smell diminishes. Your handwriting becomes tiny and illegible. Chronic constipation is a fun one, as is having to pee every five minutes. Others are insomnia, compression socks for the swelling in your feet (from the meds), a lowering of the volume of your voice, and a slowing of your speech cadence. (Although if you have ever heard me talk, speaking slowly is not a symptom I have!) And there are more: a super-attractive shuffle, uncontrollable sweating, and rigid facial muscles locking you into "resting bitch face" until your next round of drugs kicks in. These are just some of the reasons I want to write a book one day and title it, Parkinson’s: As Sexy As You Imagined. So you might think, why is she telling you all this? It's for many reasons. It’s not to make you feel bad, or make you feel sorry for me or for anyone else with Parkinson’s. It’s simply to let you be aware. Because maybe you know someone with PD who isn’t comfortable talking about it. Or maybe you yourself have weird symptoms and hearing my story will lead you to a diagnosis, whether it be PD or something else. Finally, I'm telling you this because I know many people who can’t talk about their PD for fear of losing their jobs, and along with it, their health insurance. Yes, Parkinson’s can be scary to talk about. But the only thing scarier is not talking about it at all.
Resources that can help
This is by no means an exhaustive list, but you may find some useful information.
The Michael J Fox Foundation for Parkinson’s Research - https://www.michaeljfox.org/
Great source for information on drug research and treatment advances.
APDA (American Parkinson’s Disease Association) - https://www.apdaparkinson.org/
Focused on education and patient support.
Rock Steady Boxing - https://www.rocksteadyboxing.org/
Find a local gym where you can participate in this amazing workout transforming the lives of PD sufferers.
110 Fitness - https://110fitness.org/
Weymouth, MA based gym focused on wellness for people with disabilities, featuring Rock Steady boxing classes and Pedal for Parkinson’s spin classes.
I cannot recommend Michael J Fox’s three books highly enough, particularly for caregivers struggling to understand what PD feels like from the inside.
The Michael J Fox Foundation YouTube Channel is a wealth of information, but this video is an absolute must watch on what it’s like to be diagnosed with PD.