Random Thoughts on YOPD
So, you have been diagnosed with Young Onset Parkinson’s Disease or YOPD for short. As one talk therapist told me as he sat back in his comfy chair, fingertips pressed together and in his most professional voice “That sucks.” Indeed it does.
According to the neuro line drawers, you must be between the ages of 21 and 50 to gain membership in this exclusive 4% club. That is the percentage of Parkinson’s patients who have a YOPD diagnosis. I was 39 when I found out and that was 19 years ago. Hmmm. Now that I am thinking about it, I never received my ten-year pin but I do know the secret handshake. Pardon the easy pun.
As with typical Parkinson’s Disease, the symptoms felt by a YOPD patient will be as varied as the individuals who have them. The following are general observations of YOPD gained through my own individual experience, both good and bad.
YOPD is the marathon of neuro-degenerative diseases.
Doctors who claim that we are just 10 years away from a cure are irrationally hopeful.
Develop a relationship with a neurologist who will take the time to listen to you.
Find a good talk therapist.
Address the symptoms that you have, not the symptoms that might happen.
Dopa-meters do not exist. No one can tell exactly how much dopamine your brain produces or your body consumes at any given moment.
PD medications are formulated for the average patient. If you have YOPD, you are in the 4% group of those with PD as you learned above, but it bears repeating. You are not average.
Do not be afraid to alter your medication schedule, but do tell your neurologist, of course.
The goal is to achieve fluidity when moving while maintaining lucidity when thinking.
Consider that the fewer the meds, the better.
Consider that the lower the dose, the better.
Consider Deep Brain Stimulation (DBS) sooner rather than later.
Work with your PD, not against it.
Do not be a victim or worse, a martyr.
Be selfish about your sleep.
Find a daily schedule that works for you regardless of others. In the long run, you will be happier and so will those around you.
Be disciplined in your diet.
Refine your expectations, desires, demands, and life goals. Replace those that you can’t do with those that you can. Do not limit yourself with negative expectations. Remember that you are in a marathon.
Remember that no matter how badly you feel right now, you will most likely feel better in a couple of hours . . . and vice versa.
Fine-tune your sense of humor.
Exercise. Exercise. Exercise. The best way to confront a movement disorder is to move.
Beware dopamine and/or dopamine-agonist driven impulse, unless you . . .
Follow dopamine driven impulses toward artistic expression. If you feel like throwing paint, have at it. Who knows if Jackson Pollock’s brain was dopamine rich?
And the hardest thing that I have learned . . .
Don’t overthink it.
I like this list! Very helpful and witty!
Hi Tommy
I get a profound sense of frustration from much of the above...am I right?
Made realise how fortunate I've been to live until 75 before PD was diagnosed.
"Doctors who claim that we are just 10 years away from a cure are irrationally hopeful."
But this surely all to do with money rather than the complexity of the disease itself?
If PD were to get the same kind of funding as cancer there would be progress?
Develop a relationship with a gifted neurologist who will take the time to listen to you.
This sounds like a great idea but how on earth do you do this if you are not on private medicine?
Listen to Movers and Shakers recent episode it seems that in the UK there is a shortage of neurologists because it is such a hard medicine to study!!
Find a good talk therapist.
Again money money - virtually impossible to get on NHS
As in most areas of life there will be huge gulf between the experience of relatively privileged PWP's like us and those with lower income lower social capital...no surprises there but a dismal thought.