Shake It Off: Parkinson's w/ Larry
I have never been a fan of doctors. I mean, yes, I love what they do. I just never had a need for them. Well, I may have needed them, but I avoided them whenever possible. Even as I type the words it seems like a ridiculous thing to admit. I am not saying that my stance on medical professionals was rooted in anything rational. Suffice to say, I’ve gotten past my aversion to doctors. In the past three years, I have seen more doctors, undergoing more tests and taken more medication than the 45 years prior combined.
Six years ago, I started walking with a clomp – a limp. It was a bit of a draggy foot that I credited to being overweight and out of shape.
Three years ago, I could no longer read my handwriting, because it was too small and sloppy. I could barely type. I could no longer summon my right hand to fetch items from the front pocket of my jeans. I noticed my fingers shaking. I stared at them willing them to stop. They refused to obey. After a while, my whole hand and arm began to vibrate, shake and tremor. That sent me to the doctor.
Turns out, I have Parkinson’s disease.
I was 45 years old, still climbing the corporate ladder, married and the father of young kid. Parkinson’s disease? What the hell!?! How did I get Parkinson’s? Better yet, how do I get rid of it?
I knew of two people who had Parkinson’s; Muhammad Ali and Michael J Fox - yet I still thought of it as a shaky, old man’s disease.
Turns out 10% or so of cases of Parkinson’s are classified as Young Onset Parkinson’s disease (YOPD) involving the diagnosis of Parkinson’s under the age of 60.
Parkinson’s is a degenerative motor disorder, though many non-motor symptoms are involved too. Everyone’s Parkinson’s is different, but it can include issues with swallowing, depression, anxiety, apathy, neuropathy, constipation, bladder issues, insomnia, acting out dreams, expressionless face, mumbled, soft voice, and many more seemingly disparate symptoms. And not all people with Parkinson’s have a tremor.
In the three years since diagnosis, I’ve gathered quite a few symptoms and every six months my meds are increased and new drugs are added to combat new or progressively distracting symptoms.
It’s a sucky disease. In essence, my dopamine producing brain cells are dying. You need dopamine to do anything. It is the grease for your gears. By the time I was showing symptoms, 80% of my cells were likely killed off. Now I take synthetic dopamine called Carbidopa-Levodopa. A drug that is more than 50 years old, but is still the best we got.
It is estimated that ten million people in the world have Parkinson’s. That figure has doubled over the past 25 years and researchers project it will double again by 2040.
It is not known what causes Parkinson’s though most agree it’s a combination of lifestyle, environmental factors and genetics. There is no cure. And that sucks because, while I’m still working and active and “look great”, I am also slipping, progressing, degenerating. I will likely live a long time with PD, but with more days and years comes more pain, more complications and more suffering.
It has been more than 200 years since Dr. Parkinson’s discovery of the disease. It is long past due we find some solutions and eradicate this nemesis of the nervous system.
Wait.
Yep, there is another diagnosis. Someone gets the news every seven minutes.
It could be anybody. Parkinson’s doesn’t discriminate. It could be you. I know, because it happened to me.
Find out more or donate to research at www.michaeljfox.org
Larry Gifford
Host, When Life Gives You Parkinson’s podcast
Member, Michael J Fox Foundation Patient Council
Ambassador, world Parkinson Congress 2022 in Barcelona
Board Member, Pacific Parkinson’s Research Institute