I have always had mixed feelings about rollercoasters. They thrill and excite with slow, climbing ascents to vistas with beautiful views at the top, and can be terrifying with steep and sudden dropoffs. There is very little time in-between the extreme highs and lows to enjoy a peaceful ride. I can't help but make a comparison to my journey with Parkinson's. I am fortunate that Carbidopa/Levodopa, the gold standard treatment for PD, works well for me. I swallow those little yellow gems with the anticipation that slowly my symptoms will go away leaving me with a peaceful trek through my day. Seven years ago, when I was diagnosed, the peaceful ride lasted a lot longer. My highs and lows were more like gentle, winding curves in the road with the occasional speed bump thrown in to trip me up. Today, the peaks and valleys have gotten steeper while the time to enjoy the view in-between has gotten shorter and shorter. I have tried to smooth out the ride with various combinations of extended release medications that promise to give me an hour or two more of peace. As I slowly climb the hills each day, I pray, and I devour research articles and podcasts with the hope of finding something solid to grab onto, and give me hope that my journey in the future will be something to look forward to and not dread. It is those little glimmers of hope that keep me on the rollercoaster, belted in for the ride of my life. One thing I know for sure is that scary rides are much more tolerable when accompanied by friends and I am fortunate to have many along for the ride.
At the end of a year, it is common to look back and take stock of what has been working and what needs to change. This past year, 2024, marked the eight-year anniversary of my Parkinson’s diagnosis and the seven-year anniversary of being a dedicated, passionate, leader in my local Parkinson’s community. It also was my most difficult year living with the symptoms of Parkinson’s. I ended the year exhausted, sick with Covid, and beyond frustrated with the status quo of Parkinson’s treatments, and our current healthcare system. People with a neurodegenerative condition like Parkinson’s should not have to fight so hard to get treatments they need. Even with all the research being done, and money being spent, Parkinson’s remains the fastest growing neurological disorder. It is still progressive with no cure. We are still having to fight to ban substances that we know cause Parkinson’s. The scale has tipped for me this year. In 2025, I will spend more ...
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