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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PD Medication - Optimizing Gone Wild

 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. 

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Psych issues years before Movement Disorder issues?

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.

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A grant for therapeutic healing with music?

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?

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Parkinson's Disease: The Song that's Sweeping the Nation

Three intro to psychology students attempt to explain PD through song.

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Amantadine 100mg Capsules ?

 Anything good or bad to share about Amantadine? 

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 😿

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Living in Mexico with Parkinson's Disease? Living in MX with any Chronic Illness?

We're serious about moving to Mexico. I watch videos withpositive and negatives, read stories of others experiences but not much including moving with chronic illness.

Unfortunately, Parkinson's has gifted me with anxiety about anything new. So to help my spiraling "What If" anxiety, I'm looking for other's with PD who are living in Mexico that will share their experience. I need to get past the anxiety.

I found one blog post about a woman who moved to Mexico. She's living in the retirement community, Lake Chapala. Not exactly looking for Lake Chapala right now but I liked her story because there are many positives to focus on; from the exercise group to the neurologist in Guadalajara specializing in PD and other movement disorders. 

Yarnie Journey with Parkinson's (10/2019)

Being rational, all the movement disorder specialists I've encountered are making educated guesses about the medications.  None have a box of magic pills or secret spells that will fix the symptoms.  Maybe a specialist in another country will have better results than these highly touted New York City hospitals/universities. Something non-invasive but effective? Doesn't sound so far fetched for a plant that Mayans or Aztec used to detox kept the gunk in our heads from building up and causing many neurologic illnesses.

Initial logistics- We're thinking renting in a beach town for the winter, and if it's very hot, move up to a place in the mountains during the summer months.

I'd like to get a few names of recommended neurologists and the medication used better, worse, same as in the USA? It would be great if some ex-pats are reading this blog post and can share their support network. 

Share your experience of moving to Mexico with a chronic illness.

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PD and COVID-19 Vaccine

I have to start with, "I'm not a doctor and any mention of medical or science is my opinion"

About 4 weeks ago I received the second COVID-19 vaccination. My memory of events may be a bit hazy, but it seems like the effectiveness of my Parkinson's medications changed shortly after the vaccine.  

This is my personal opinion and others will confirm I have been complaining about off times and dose failures for a long time. Can you tell I am emphasizing this is a personal opinion of a lay person, not the results of medical science.

Pfizer 💉💉

First shot -

2:00 PM - First dose of the vaccine had.a brief warm/burning sensation.

7:00 PM - The arm which got the vaccine was very week a few hours after the vaccination. 

Day 2 - 9:00 AM - The next day I could barely lift the arm.  This only lasted about a day and a half. 

Day 2 - 2:00 PM - 24 hours after injection, I felt slightly sick, like a mild flu.

Pfizer 💉💉

2nd shot - 

4:00 PM - 2 hours after fell asleep sitting upright for a few hours.

Day 2 - 7 PM - 27 hours after had a throbbing headache followed by aching legs and arms

Day 2 - 10 PM - 30 hours in, fluish. Funny he doesn’t look fluish. 

Day 2 - 11 PM - After a brief battle headache and flu stopped. 

Day 2 - 11 PM - Arm pain. This may just be my regular day to day pain. 

Day 3 - 1 PM - approaching the 48 hour mark and eyelids feel very heavy. 

Strength in arm is okay with 2nd.  No extreme weakness like first dose.

A day after the vaccine I was definitely falling asleep during the daytime more frequently.  The off times were more pronounced, 30 to 60 minutes after taking PD med, it hit me like a boomerang. The stiffness and freezing was extreme. I tried reducing the medication and it seems to have helped the extreme off times for a while.  

Since my experience, I have read stories of others with a similar response to the vaccine. Any PD experts tracking this data to see if there are side effects from COVID-19 vaccine that changes effectiveness of levadopa/carbadopa?  It would be a nice project for a medical professional to start.

Since March, when I got the vaccine, I've also been having extreme anxiety, mostly when I wake up but also associated with the mediation off times and my vision is blurred.

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