PD Open Message on Facebook

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 get a cure, I decided to be authentic and share the news here.  Twelve years ago I was diagnosed with Young Onset Parkinson's Disease. I am not seeking emoticons of support, just letting friends know what's up. Parkinson's Disease has a very long list of symptoms, it's like the menu in a Chinese restaurant when talking about symptoms. One person suffers from B1, B3 and G4 the next person suffers from B3, C1 E22 and p5. And do you want shakes with that? No two people have the same path. If you want to read more, I'll add a blog link in the comments.  I know it is hard to understand that one illness can take so many directions but for now it's all called Parkinson's, maybe it will have sub classifications in the future, who knows. Hopefully this message doesn't make you too uncomfortable. 

One thing to remember, the illness is both chronic and progressive with no cure.

So here it is, now on Facebook. You can click an emoticon, post a GIF or send thoughts and prayers, it's all good. Phone calls or email are welcomed.   I don't like Facebook messenger and try to avoid text messaging when possible.

TGIF and have a great weekend.

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Keep Me In Your Heart (song)

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. 

 

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Have you told friends and family or accepted help with expenses?

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 soul. Not yet, but I have hope :)    to be continued, check back...

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How to help loved ones with chronic illnesses enjoy the holidays

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/

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Fundraiser for Parkinson's Unity Walk (Facebook fundraising)

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 research grants: American Parkinson Disease Association, Parkinson’s Foundation, The Michael J. Fox Foundation for Parkinson's Research, and The Parkinson Alliance.

Our Walk is held every April in New York City’s Central Park. In addition to the 1.4-mile wheelchair-accessible walk route, we are a comprehensive event for Parkinson’s disease information and resources.

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Meds Adjusted and actually feeling a bit better, for now

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 worked and after the show, besides feeling exhausted, I felt good! Keeping my fingers X'ed. 

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Afraid to tell people I have PD

 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.

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