Parkinson’s and Post-Covid Syndrome

Some days you’re kickin’ it and other days it’s kickin’ you.
Today was an “other” day.
And its timing stunk.

I don’t think I’ve shared here that I was “officially” diagnosed with Post-COVID Syndrome in early March. In my mind and in my limited COVID-related medical interactions, this really means nothing more than medical offices now have an ICD code to use for billing and insurance. So much is still unknown about the ramifications of a COVID infection and answers are fleeting. It is very difficult to get some professionals to listen…really listen. And one-sided conversations don’t ever lead to treatments and solutions. Take those obstacles and partner them with a Parkinson’s patient who is overweight and needless to say…I am getting nowhere. Every provider I’ve tried to work with wants to chalk any symptoms up to either my Parkinson’s or my weight. But, here’s the problem with that reasoning…I had Parkinson’s and was overweight before COVID and had NONE of these symptoms I’m trying to explain. If you’re sensing a bit of anger and bitterness…you’re right on.

This is SO damn frustrating. With Parkinson’s Disease, my “baseline”, even pre-COVID, was not all that desirable. But, I would give just about anything to be back to that baseline right now.

giving out…

Just one of the lingering effects I’m dealing with since I had COVID in November is significant weakness in my legs. I deal occasionally with some balance issues because of Parkinson’s, but not necessarily any weakness issues yet…at least in my legs. On the days when my balance feels off, I use a cane for extra support and things are fine. But, shortly after the first of the year, my legs started giving out on me…sometimes with no warning.

The first time it happened, I was fortunately near a chair. Unfortunately. I was facing the chair and did a not-so-graceful deep faceplant into that chair. Fortunately, it was that chair that provided my landing and not the floor. And, also, fortunately…I stumbled away from that fall with minimal damage. Just a few bumps, bruises, and sore muscles.

I’ve had a few other falls since then, but again…the damage was minimal. Until today. Today was a doozy. Today was an “other” day. I wasn’t kickin’ it today. Today…PD/Post-COVID kicked me.

for the first time in forever…

For the first time since October…I had plans tonight. Actual plans. In public. With other grown-ups. At a venue. These days, having plans requires some strategic, well…planning. It means laying pretty low the day before and planning a recovery day the day after. It means adjusting the timing on my meds a bit so they are at the maximum efficacy while I’m out. It means knowing what I’m going to wear the night before and making sure it’s laundered and ironed. Because…I can’t do laundry and take a shower on the same day…it’s too much. And it means taking breaks while getting ready before going out. And this is where I got kicked today.

I had finished my shower this afternoon and thought I rested my legs long enough after. But, I was brushing my teeth and they just gave out. You know how when you’re a teenager screwing around with your friends and one of them sneaks behind you and buckles your knees? That is what it was like. No warning and, while brushing my teeth in the bathroom, no place to land but the tile floor. I landed kind of sideways on my hip/lower back. They’re both pretty sore and I can’t really distinguish where exactly the majority of the pain is originating from. And, I must have stretched my arm/shoulder/neck weird too because that hurts, as well. I’m going to be okay…just not right now.

And those grown-up, in public, first time in forever plans…?

I had to cancel.

Today was definitely an “other” day.

but not giving up…

So, my legs may be giving out…but I’m not giving up. I feel like it. Some days I really want to. I have not felt good for even a one-hour chunk of time since November 8th, 2020. I’m tired of feeling like this. I’m tired of fighting. I’m tired. So, what I will do is allow myself to feel this. I will cry it out. I will scream it out. I will write it out. And then I will get up and kick back.

After that picture-perfect faceplant into the chair a while back, Mike and I talked and decided that it would probably be a good idea if I looked into getting a walker. Just for a while. I cried when I ordered it. I cried when it arrived. And I cried the first time I used it. But slowly…I’m learning to accept it. So much so…I just named it. Gustafson. From the movie Grumpy Old Men. Seems appropriate.

adjust, modify, repeat…

That’s how I’m doing it and that’s how I’m getting through.

Adjusting. Modifying, Repeating.

And even though I am not currently kickin’ it…even though today was an “other” day that kicked me good…I’m NOT giving up.

Because tomorrow is another day.