Diagnosed with Young Onset Parkinson's Disease YOPD in my 40s. Here I share my experiences with Parkinson's Disease, Along the way I'll share some interesting tips I come across and occasionally some of music that moves me. Hopefully something I share helps others dealing with their own PD battle. Remember that everyone experiences YOPD or PD differently, what helps one person may not help another person with the same diagnosis.
Robin Williams' son Zak got candid about the effect of his father's misdiagnosis and how he dealt with the trauma after the actor's death in 2014.
Zak, a mental health advocate, spoke with host Max Lugavere on his podcast The Genius Life to discuss Williams' "frustration" and discomfort before his death. The episode was released on what would have been Robin Williams' 70th birthday.
Zak talks of the frustrations faced by his father, Robin Williams, as he struggled to cope with the symptoms of Lewy body dementia after being misdiagnosed with Parkinson's disease—and a completely different set of expectations and treatments.
I'm hesitant to share that I have PD with people. Most or all of my relatives know, a few neighbors and a few friends.
The worst reaction is when friends drop me from their lives like I'm dead or contagious. Others range from tears, hugs, articles (so many articles), to dumb shit like, "oh okay" as if I said I just stubbed my toe. Best response was someone I hardly know, "So sorry, if you need a hand with anything, do not hesitate to call. I mean it."
I slowed down telling friends, can't handle the dumb or disappointing responses. My advice is try not to personalize dumb reactions if you share your diagnosis. It is hard but so is this illness. I want to hang out, even if I have to sit down, don't speak much and struggle with things.
i miss the change of venue, walks, sunshine. I miss seeing friends, feeling wanted / included, a feeling of value for my smart ideas.
Before I told people, even before my diagnosis maybe, I thought it was just stress or something like that. I made a GoFundMe page with the fantasy a billionaire would hear my pleas and help. I still could us a few hundred thousand, send those wealthy friends to my gofundme.
Okay I am not waiting for a box of gold bars to show up, and while 3 or 4 hundred thousand would cut down stress, it wouldn't cure me. I need to get motivated and shake off the self pity for compassion and understanding. Start walking again, find a slow beginner yoga group, eating better, etc.
The battle of medications, dosages, frequencies versus PD is an ongoing battle. My meds and off times went in a spiral in March 2021 right about the time I got the vaccine for COVID-19 (see PD and COVID-19 Vaccine). A coincidence? Maybe. Whatever the cause, I've been like a newborn horse trying to stand and walk, on a sheet of ice.
My team of neurologists and their staff have been helping. Changing meds, doses and yesterday (June 30th) was the first day I didn't go to a 4 or 5, the red zone.
I rank the PD symptoms on a scale 1=good to 5=bad,bad,bad and symptoms were not over a 3 for two days. A couple more days and I'd say we made progress! Whatever spun my meds, vaccine or random, I hope they're getting back in control now.
Anybody else have medication struggles after getting a vaccine?
UPDATE: There were 2 good days but back to mostly off times. Meds not optimized yet.
My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50 years old).
The day I started Sinemet in May 2012, I felt euphoric. The Sinemet helped all non-motor issues (listed above), as well as gait, choking, arm swing, facial masking, etc.
I have one big favor to ask here, PLEASE tell me I am not the only person where weird psych behavior preceded the motor symptoms (like gait, arm swing, etc), and by so much time. THANK YOU.
I hope this sincere idea helps the disabled get out of their confinements to enjoy some music and social time around others.
I had an idea. Instead of someone living on social security disability checks awkwardly asking venues and musicians for guest list to shows and festivals, which impacts the business income, how about a government grant (or a biz/individual philanthropic) for people with brain illness where live music has a documented huge positive impact on their brain health.
Music is scientifically shown to stimulate neuron activity. And fund the cost of the admission for them? At least one of my friends know about grants, can you lend a hand?
Besides Rytary's price and failing to last more than 2 hours in my system, I've been having off-times and dosage failures with Rytary. So I switched back to Sinemet and the MDS added Amantadine which seems to be creating anxiety, not sure if it's actually the new med or something else.
UPDATE: After a week taking Amantadine anxiety settled a bit but on/off times still an issue 😿
As an Amazon Associate, I earn from qualifying purchases. If you choose to purchase after clicking a link, I may receive a commission at no extra cost to you.
