Dealing with Parkinson's Disease

At first, I didn’t want to tell anyone. When I was diagnosed with Parkinson’s disease, it felt like a private earthquake—my world shifted, but from the outside, everything looked the same. I thought if I just carried on as usual, maybe people wouldn’t notice. But Parkinson’s has a way of showing itself. The the frozen face, the slow movements, the voice that gets softer without me realizing it—it all adds up. Eventually, people began to ask if I was okay. That’s when I started telling the truth, at least privately to closer friends and family. I’d try to sound calm, even casual. “Yeah, I’ve got Parkinson’s,” I’d say, “but I’m doing all right.” I didn’t want sympathy or a sad look. I just wanted people to understand. Most of them reacted kindly. They said things like, “You’re strong.” “You’ll beat this.” “Let me know if you need anything.” And they meant it—at least in that moment. But as time went on, the calls slowed down. The texts got shorter. Invitations stopped coming. It’s not th...

I've been going back and forth whether I wanted to 'go public' with the news of having Parkinson's.  This week, after a lot of thought, I did it. And received so much positive support from Facebook friends. No regrets.    Here is what I posted to my Facebook timeline. I'm guilty of posting a vague reference to my health.  Not sure why but for a long time I've avoided telling many people that I was diagnosed with an illness.  I still don't feel comfortable talking about it, mostly because it has gotten negative responses or reactions from the few friends I've told. It seems every time I open up and tell a friend, it's the last time I'll hear from them.  A few wrote to me that people don't want reality contaminating their Facebook fantasy world so I've been hyper-selective about what audience I expose to my postings that don't eude toxic positivity.  Since I broke character yesterday and posted a vague message seeking a time machine to ...

The music is not specific to PD. I'm a music fan and some mornings I share a few songs. This morning I'm just feeling invisible, misunderstood and missing. Friends have moved on with their lives, With a look of ease drawn on my face, it's easy to misread my feelings as lack of concern. I do worry and I do care. Stuck inside myself.  Stiffness and pain. Frozen.  I miss me.   

I'm not very comfortable discussing Parkinson's with close friends and family. Many friends don't ask.They talk to each other, word gets out that I have "something wrong". Friends I do tell? They drift away and say to each other they think I had a stroke, or something.  Online is a little strange, many people don't want to deal with real life events or friends crisis--so I don't post on my own FB page about real struggles. Maybe I should but I don't. As for gofund, etc. Once in a while I post a link to ' relaxsteve '. Imagine if everyone could afford to give $50 to every friend's gofundme. I only setup the gofundme page with the hopes a billionaire might drop me a hundred thousand or two.  But I never campaigned for donors or asked friends/family for help day-to-day struggles. When I first made the gofundme page I wrote "$500,000 minimum" that will filter my close friends and family out and hopefully get $ from a wealthy kind sou...

How to help loved ones with chronic illnesses enjoy the holidays [The Washington Post] For many people with chronic illnesses, the holidays can be a lonely and exhausting time. Health limitations may keep them from joining celebrations, and participating in the festivities can quickly tire them. The Washington Post asked people with chronic conditions for advice for family members, friends and colleagues to help make the holidays an enjoyable experience for everyone.   https://www.washingtonpost.com/wellness/2022/12/23/chronic-illness-holiday-tips/

I am raising money for the Parkinson's Unity Walk via Facebook fundraising .  I've chosen this nonprofit because their mission spreads awareness of Parkinson's Disease and distributes to the research organizations listed below. I hope you'll consider contributing. Every little bit will help me reach my goal. I've included information about Parkinson's Unity Walk below. www.facebook.com/donate/468755728571510/ The Parkinson’s Unity Walk is the largest single-day grassroots fundraiser for Parkinson’s disease research in the United States. Our mission has always been to raise money for Parkinson’s disease research. Thanks to our supporters and sponsors, more than $26.5 million in donations have been raised since the first Unity Walk in 1994 -- 100% of which has funded hundreds of research studies, taking us steps closer to finding a cure for Parkinson’s disease. All donations are distributed to the following four organizations for the sole purpose of funding ...

A few meds changed or added seem to be helping me.  Never follow my medical scribblings, consult your doctor before changing or stopping any medications. Changed first dosage of the day of carbidopa/levodopa (C/L), here's what I'm doing... instead of one and a half pills at 9am, I ramp up with 1/2 a pill at 8:45am and half at 9:15. My analogy of taking 1 1/2 pills at once is a tsunami pulls the tide out (stiffness and freezing) then the wave hits me (a brief on time) before receding back into the sea (wearing off).  Splitting the dose is more subtle of a wake up for my brain-like the tides. Yes my meds are still wearing off and I still get dose failures but somehow they seem a little less intense. Last night I met up with one of my friends from Miami for dinner, then to go hear music! Dose failure and I'm sure it was totally due to taking C/L during my protein filled meal (hard to time this right). So nobody got to see my signature bad dancing at the show–but my next dosage...

 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 ...