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.
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Sydney Kubica
Hi! I believe I have symptoms of Parkinson's disease, but I keep getting dismissed as having anxiety or having a heavy period. These are my symptoms.
7 years ago: I worked out and lifted weights 4-5 days a week. When I would do cardio, I started getting light-headed, losing my vision, getting dizzy, and eventually passing out if I kept going. I passed out twice at the gym, but after that, I stopped doing cardio and only lifted weights. light cardio continued to trigger this response for years. When I would go to the doctor for this, I was told it was anxiety.
2 years ago: My issue of getting dizzy and near-fainting spread into my work life, but I did not like going to the doctor for it because it always got dismissed as anxiety so I avoided going. However, I started falling frequently. I feel outside my apartment and sprained my ankle. I went to the doctor for it, and she asked how I fell. I didn't trip over anything. I just fell. She took my blood pressure and my systolic blood pressure was 84. She asked if that was normal or if I felt dizzy frequently. I said I felt dizzy frequently and she made me see a cardiologist. Everything came back normal from the cardiologist. He told me I have anxiety.
1.5 years ago: Dizziness and symptoms coming from fluctuating blood pressure worsens. I would get nauseous, lose my eye sight, my voice would weaken, my finger tips would get numb, and my fingers would stiffen. It all came on when I would exert myself. Sometimes I would throw up from nausea. I go to therapist for anxiety and am told I don't have anxiety. My hands freeze a lot and won't respond when I'm trying to move them.
1 year ago: Move closer. to my parents because I'm getting sicker and the hospitals where they live are better. Family friend suggests I have dysautonomia/POTS. See cardiologist at highly regarded hospital: she agrees that I probably have dysautnomia or POTS.
8 months ago: I go to a neurological therapy clinic to treat my dysautonomia. They use an EMG on me and figure out I have no gaze stability in my eyes and they say this is causing my dysautnomia. They do tilt table therapy on me for 1.5 months to help my brain relearn how to regulate my blood pressure. At some point during my therapy, I get horrendous pain in the left side of my body in my head, shoulder, and hip. They say it's being triggered by dystonia. They tell me I have issues with my gait and that one of my arms isn't swinging. I'm also having very bad brain fog. Zero concentration. They test my memory and say I have no immediate memory. I'm also slurring my words and having to put a lot of extra effort into annunciation when talking.
7 months ago: Tremoring starts in my feet and toes at night when I'm trying to sleep. Soon after, slight tremoring starts in right hand, lower lip, and jaw. Involuntary movements around my mouth and eye brows start occurring. Facial muscles are stiff, and I lack facial expression. Extreme joint pain is on the left side of my body, mostly in my hip, shoulder, and jaw. I also have burning in my skin in my hand.I can hardly walk so I get a cortisone shot in my hip. Go to the dentist because I can't open my jaw. She says it's not being cause by anything orally and that I must have an underlying condition. I tell my neurologist all of this. Tells me I'm either having a heavy period or that I have anxiety. Also asks if I'm an alcoholic.
6 months ago: Tremoring in hand worsens. Slow rhythmic tremoring in my thumb and index finger. Happens when I'm resting or if I'm doing a motion that triggers it (scrolling on my phone triggers it). Crippling fatigue all the time. All I want to do is sleep. I have constant internal tremoring at some point in my body at any given time. I also get a sensation some nights of feeling and acting completely drunk even when I'm sober.
3 months ago: Tremoring in my hands is worse now. It has spread into both hands. My doctor has never seen it in person because it only happens at rest. I have videos that I show them. I get headaches constantly only on the left side of my head. Goes in my eye and down my face. No sensitivity to sound or light, though. I now live with my parents because I'm too sick to work steadily and have a lot of medical debt.
Currently: Everything is starting to smell and taste like potting soil or cough syrup. I don't have covid. I am on Cymbalta for my joint pain. It dulls it, but it isn't gone. It also got rid of my neuropathy. My doctor still insists I'm anxious. I fell in the driveway around Christmas and sprained my wrist. I fell down my stairs two days later and messed top my back.