PD Fatigue, Apathy and Covid

The Covid plague had a lot of invisible effects on people. Two of the Parkinson’s symptoms that ht me very hard are fatigue and apathy.  If you haven't experienced this combo, it's not easy to imagine having good "on time" when meds are working pretty good and having to decide what you will do during this "on time" window that may close at any moment or stay open for a couple of hours. 

I have a list in my head and on paper of things to do when meds are working. In no particular order: Take a shower, cut my nails, pay bills, vacuum, pick up medication, buy some groceries, reply to email, call a friend or relative, shave, do dishes. While I sit frozen in my body, I also think of huge projects, getting physical therapy, replacing appliances, home and auto repairs and moving to more affordable home. Oh I left out one ingredient. Anxiety. Add anxiety to apathy and fatigue. It's not good. And it is horrible for a spouse / partner / care giver who frequently gets ignored and zero support.

During Covid some people learned, built, discovered. During Covid my PD symptoms grew and my routine was suspended.  Daily walks, yoga, exercise, movement classes and being a volunteer at New York Cares where I helped elderly learn to navigate their computers and the internet stopped. It is very hard for someone with a chronic progressive illness like PD switching gears "just" start new routines.

So I have a new prescription for physical therapy and started going to a movement class. That's 2 things. I'm slowly adding to my weekly goals but it's always a battle with fatigue and apathy.

I'm not sure how many read through this blog but if I can help even one person, it's totally worth it. Post Covid is hard. Writing this blog post this morning was my choice of things to do when my meds are working, "on time" 

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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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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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