Reflecting on 11 Years With Early-onset Parkinson’s Disease
Columnist Samantha Felder recalls the highs and lows of her journey with PD
Every November brings a rush of emotions for me, and Nov. 1 and 21 are the most emotional of all.
On Nov. 1, 2011, my grandfather passed away. We had a close relationship, and losing him was absolutely devastating.
Twenty days later, I was diagnosed with early-onset Parkinson’s disease at age 21. I was in complete shock, considering that nobody in my family had Parkinson’s — at least not that we were aware of. In the coming years, I found out through genetic testing at Northwestern University that I had mutations on both copies of one of my genes, which means that both of my parents are carriers. It’s important to remember that being a carrier doesn’t mean you are destined to develop the disease.
The past 11 years have been full of ups and downs. I am grateful to have such a supportive family that has come together to raise funds for the Parkinson’s community in Wisconsin. We started a fundraiser that has raised over $85,000 for the Wisconsin Parkinson Association.
Finding my people
When I was diagnosed, I thought I’d never fall in love. I didn’t believe any person in their 20s would want to be with someone who has a chronic, incurable disease. To my surprise, one man actually saw me for me. Derek and I got married in October 2018.
I have also made amazing friends who are in similar situations as me. I felt like I’d finally found people who wouldn’t judge me. They’ve taught me so much, such as how friendship can stretch beyond borders, as my best friend, Hillary, resides in Canada. They’ve also taught me that Parkinson’s patients are not weak or incompetent. One friend competed on multiple seasons of “American Ninja Warrior.” Another competes in CrossFit competitions, and yet another won “The Amazing Race Canada.”
But Parkinson’s still sucks, and nothing makes up for the downsides of the disease. For example, I’ve suffered some unpleasant side effects of Parkinson’s medications, including loss of impulse control. My addiction was gambling, and I would spend way more than I could afford, which took a major toll on my relationship. Derek and my mother wound up taking over my finances for a while until I could get my act together.
Since then, I have successfully avoided gambling. A few weeks ago, while visiting family, I was able to sit in a casino for over three hours without being tempted to gamble once, which was a huge improvement for me.
At one point, after switching doctors and medications, I struggled with dyskinesia and hyperkinetic movements, which were as frustrating as they were debilitating. I am preparing to start taking some new medications and hope they will not have the same side effects.
I can’t believe it’s been 11 years since I started this journey. As I reflect on the years since my Parkinson’s diagnosis, I think of the trials and tribulations, the positives and negatives. It’s been one heck of a ride. I hope you take time this month to reflect on your own journey toward embracing the shake.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.