Tag: #medsontime #parkinsonsdisease #dopamine

Progress

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“How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder?”

– Me

Over the past month or so, I have noticed that the tremor in my left hand/arm has gotten worse.

I don’t like this.

At the first indication, I chalked it up to not getting enough sleep, eating too much sugar, or not getting enough exercise. But even as I have attempted to correct for these, the tremor is persisting. My MDS (Movement Disorder Specialist) has suggested upping my meds from 3 pills/day to 4 pills/day.

I don’t like this either.

Generally, since D-day in 2017 (Diagnosis Day), my symptoms have remained rather steady. The dosage of levodopa has not changed in all that time. And now, I am facing the reality of Parkinson’s…it is progressive.

I am incredibly resistant to the idea of taking more Levodopa;

  1. The side effects of increased and continued use of Levodopa are not pretty. The nastiest is the development of Dyskinesia (involuntary purposeless movements). Not good. I have already observed some mild Dyskinetic movements – I don’t like it. How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder? Read more here: Medication side effects
  2. The idea of taking pills four times a day is ridiculous. Currently I’m on an 8-2-8 clock schedule. Upping would mean 8-12-4-8. Add to this the requirement to take meds either 30 minutes prior or 2 hours after protein intake and I think I’ll need a personal assistant! Seems the entire day is planned around meds. I do have a handy little med app on my phone to remind me and I’ve stashed pills everywhere to try to make it easy…but it’s not.
  3. Ultimately, the hesitancy is rooted in my realization that things are progressing (not the good kind of progress). I am a competitive person (some of you are giggling right now because you’ve witnessed this firsthand). I do not want to ‘give in’ or lose to PD.

Contemplating the addition of that tiny extra pill for my brain is a mind game where there is no winner!

Image by Racool_studio on Freepik

The Good, the Bad, and the In-Between

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This past week has been rough. And that prompted me to write about my struggle. But when I logged in, I realized that I hadn’t written since June! I questioned my purpose for writing. It seemed I had fallen into a habit of only writing from a negative lens. Easy enough since Parkinson’s is lousy, but if there is ‘good’ then it needs to be acknowledged.

The Good

* I planned and went on a 13-day Mediterranean cruise! We had never been outside of North America so this was the trip of a lifetime! I was very aware of how PD could make this difficult and planned accordingly. I gave myself permission to alter plans as required, rest when needed, and I repeatedly checked my med count and multiple med packing spots so I would never be without (been there – not fun A Day Without Meds). Planning paid off and the trip was incredible. We logged between 8-10km of walking per day (which as I’ve said before is my best medicine Exercise is Medicine and Exercise is Medicine #2 ) and saw everything that we had hoped to take in. PD took a back seat and I was incredibly grateful.

* I picked up a new hobby! What started out as painting an old dresser turned into a new hobby of refinishing old furniture. There is something very rewarding about stripping off old worn-out furniture, finding the treasure underneath and giving it new life and purpose that provided me with tremendous joy. The energy that I found seemed endless – furniture rescue operations provided me with a natural hit of dopamine that had me on overdrive. I refinished over 10 pieces of furniture. I renovated the laundry room. I refinished and painted my kitchen cupboards and renovated my kitchen. I was unstoppable – obsessed. Not a bad addiction to have though as I’m truly enjoying my living spaces! As the winter weather moved in, I had to stop working. It became too cold in my garage, for both myself and the wood, to continue.

The Bad

* As soon as the kitchen was finished, I got sick. Just a head cold, but it knocked me off my game. My low blood pressure kicked in and poof – I’m on the couch. Fatigue, worsened tremor, rigidity, apathy, dizziness, restless sleep/dreams. It all came back like a wave and I went down.

Why? Well, it could be really simple and I just picked up one of the many viruses that are circulating and this triggered all that defined PD. But I’m starting to think that once I closed up my little woodworking operation, the extra hit of dopamine was sorely missed.

Increased my salt and magnesium intake, and getting my meds on time is working, but at a very slow pace. I know what I need to do; move, get outside, eat well, and find a new purpose. But it is so crazy-hard to do that when your battery is dead.

The In-Between?

There is no such thing. Seems that it is all or nothing. I prefer all.

Santorini, Greece

A Day Without Meds is like a Day Without…

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“Friendship is a wildly underrated medication” – Anna Deavare Smith

I started taking Levodopa five years ago immediately following diagnosis. Right from the start, I didn’t notice a significant impact. Other PWP spoke about their on/off times and how they watch the clock in anticipation of their next dose and intended relief. I have never felt that way – in fact, if I didn’t have a reminder set on my phone, I might likely forget to take my meds! I’ve mentioned this to my neurologist, but she felt that the meds were having an impact and that my low dose was beneficial.

I have often toyed with the thought of going off them just to see how they work or don’t work, but have never followed through with my curiosity.

Well, purely by accident, this curiosity was unfortunately answered.

I went away for a weekend with the best-ever lifelong friends and when I looked to take my 8pm dose, I was alarmed to realize that I had forgotten my pill pack. Oh my! I kept this information to myself. I knew this wasn’t life-threatening and I also didn’t want to alarm my friends. The meds were a two-hour drive away and I didn’t want to upset the weekend.

All remained relatively ‘normal’ for the first 24 hours. Time was spent hiking outdoors in the sunshine with two of my favourite people. Laughter, sunshine, and exercise are all producers of natural dopamine which is what I will credit for the initial feeling of normalcy. Without these, I predict I would have felt the ‘off’ period much sooner. But after a full day unmedicated, all hell broke loose.

I did not sleep…all night long. My left side was tremoring just enough to wreak havoc on my ability to calm. By morning, my body was crying for dopamine. I was emotional, stressed, and physically and mentally exhausted.

Upon arriving home, I took my meds and within 30 minutes, calm was restored.

Did I survive? Yes

Did I have fun? Absolutely

Do I need medication? 100%

Now I know.