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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PD question: Shaking or Stiffness?

You may have heard, "everyone's Parkinson's is different" a few times by now. In my case I don't typically have shaking. When my meds wear off, I get slow and stiff--at times it is to the point that I cannot get upright if I am laying down or out of a chair.

I usually need to hook my foot under the couch or seat and pull myself up.   It can be painful and led to some awkward situations when I really need to visit the toilet and can hardly move.

 

I try to remember it will be okay once the meds kick in.  If I'm in a store, most cashiers give me time or even offer to help me manage. I bring this up because the cashier's attitude yesterday. He saw I was obviously struggling, and kept saying 'three dollar' over and over. I started to get anxious but quickly turned his obnoxious three dollar ballad into a game (while I continue struggling to get my wallet).   ?How much is it on Mars?",  "Can I pay for just a bite?", etc. 

One trick that works for me sometimes is flick my fingers or shake my wrists for a bit of relief.

Do you have tremors, rigidity or both?

Tremors (shaking)

Rigidity (stiffness)

Both tremors and rigidity

Create a survey

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Keep moving, move big!

A few years ago I went to a LSVT "Move Big" physical therapist that focuses on the movements like arm swing and gait while walking. LSVT BIG trains people with Parkinson disease (PD) to move more "normally" using big movements and steps.

People living with PD or other neurological conditions often move differently, with gestures and actions that become smaller and slower. They may have trouble with getting around, getting dressed and with other activities of daily living. LSVT BIG effectively trains improved movements for any activity, whether “small motor” tasks like buttoning a shirt or “large motor” tasks like getting up from sofa or chair or maintaining balance while walking. The treatment improves walking, self-care and other tasks by helping people “recalibrate” how they perceive their movements with what others actually see. It also teaches them how and when to apply extra effort to produce bigger motions – more like the movements of everyone around them.

The only reason I stopped going was because the place hired a new person to help with the movement exercises and he caused me to fall and bruise my hip. Otherwise it was pretty cool.

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Pandemic Social Isolation, a familiar feeling

Some of you with chronic illness will relate. When you are forced to stay home due to your illness, cannot make long range plans, often forced to cancel last minute. 

People do not want to stand too close to you just in case it is contagious.  

Assholes talk behind your back, “do you think he has it?"

Say insensitive comments, "Looks like he had a stroke" or "He’s so full of shit.” 

Your usual support network is cut off, spending days, weeks, even months at home. Anxiety. Depression. Fear. Loneliness.  

POST PANDEMIC and the world gets the green light to go.

After the pandemic your life goes back to ‘normal’ which is pretty much how it’s been during the pandemic. Only getting out to go to doctors or pharmacy. Phone calls are trying to get prescriptions covered or make doctor appointments. 

And there are those lists. "If you make a list, it might be easier to accomplish things". I'll add that to my list right now.

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5 PD Symptoms Nobody Talks About

 from parkinsonsdisease.net:

Most people think of Parkinson’s disease (PD) as a neurodegenerative motor disorder. When you picture someone with Parkinson’s you imagine someone with a tremor, slowness of movement and difficulty controlling movement. But in recent years more has been learned about the non-motor symptoms of PD. There are a broad range of symptoms that range from anxiety to weight management and beyond.

read more on parkinsonsdisease.net

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PD Awareness Month - thank the caregivers

 PD is shitty, we all know this. What's worse is the treatment of ignored caregivers.  24/7/365 thankless job dealing with the PD psych issues, non-motor issues. The motor issues suck, but doctors have a specialty in neurology for the shaking, stiffness and freezing.  What about the nasty moods, paranoia, and other psych issues specific to what is inside our Parkinson's heads?  Anybody?

here is some stuff for caregivers, on parkinsonsdisease.net/caregiving

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Preparing for a 5K race

I’m preparing for a 5K walk to raise money!  Yesterday on my walk I discovered it’s exactly 5K or 3.1 miles from the apartment to the East River and back.  Today I took a different route only walked about 2.3 miles probably because there were more food options. What takes so long to prepare pan fried dumplings anyway? 

I’m going to plan a route with faster service so I can pick up the pace a bit. The event is in a few weeks and I’m supposed to be able to complete a 5K walk in about an hour.   I know I can do it!

SUPPORT my 5K Walk, even better JOIN ME on the walk, virtually. 

Please visit my personal page https://foxtrot.michaeljfox.org/spring/yonewyork.

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Exercise

You’ll start hearing this a lot. Exercise is the best way to slow PD progression.
Join a gym, do yoga, boxing, dance, etc. PD specific exercise classes work better for me.  Even if you’re not feeling so great, go to the class anyway because just getting out into the social setting is good for your mental health.

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I'm more likely to have an excuse to avoid exercise than go do something so the PD specific groups are smaller and more supportive to go even if I'm not feeling so good.  Going to a gym tends to be a negative experience for me, too many "A Type" exercise people saying things like "it hurts but it's a good hurt."

A few Parkinson's specific exercise programs I know about near New York City

• Rock Steady Boxing
• Edmond J Safra National Parkinson's Wellness
• PEP! (Parkinson’s Exercise Program) PEP! (Parkinson’s Exercise Program) 
• Wellness in Motion: Dance Therapy for Movement Disorders
• Dance for PD
• Sing for PD

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