A Personal Journey Through Young Onset Parkinson’s Disease

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“Why do you shake?” “Have you ever noticed you shake?”. I was pouring a glass of water after finishing a run and my dad expressed genuine concern and slight curiosity on my shaky hands. The answer I gave was along the lines of “I don’t know. Maybe because I just finished working out and sometimes that happens”. I didn’t answer the second part of his question, I just thought to myself, “I have but didn’t realize other people did”. At that time I thought it was very subtle which is why I never thought much of it, and I think looking back right now, I still didn’t. I continuously justified my symptoms with other things…”I just finished working out”, “I drank too much the night before”, “I’m dehydrated”, “I’m just a little anxious”. Granted, all of these things can elevate symptoms, looking back at it now it is easy to say the signs were there but a tremor isn’t enough to jump to conclusions. I was 26 years old at that time and wouldn’t be diagnosed for another two years after more symptoms had developed. Even then, at 28 years old, no one would think, “Yup. Parkinson’s”. So, to even think I should have known would be far-fetched.

Young guy sitting in restaurant

I will be 30 in just a few weeks and I was diagnosed with Young Onset Parkinson’s Disease when I was 28. The symptoms seemed to have escalated a year prior when I was living in Boston. I had moved out of my parent’s house for the third time (and honestly probably not the last as we are all so underpaid and everything is so expensive). I went from seeing my family members everyday to once every couple of weeks or months and I think that is when things had become more noticeable to them. When you live with someone, I think it is harder to pick up on changes as they usually develop gradually. If you see someone every couple of weeks or months, their changes would have escalated three times since the last time you saw them becoming more noticeable. Slowly, I began to hear from them “why are you shaking”. We would joke “he’s hungover”, “maybe you should drink some water”. I knew I didn’t even drink the night before and instead of saying that, I would just laugh it off as I think maybe I didn’t want people being concerned. But this was becoming just one of many other symptoms. There were times it seemed I was moving in slow motion. My movements were so over-calculated and deliberate, just doing something like grabbing a slice of pizza or taking money out of my wallet looked like I was doing heart surgery. My family then began picking up on my speech, saying it seemed softer or like a mumble at times. By this time, my lease was ending and I was preparing for a bigger move to Minnesootta. I went to see one doctor just before leaving for which he expressed concerns but thought it was more related to anxiety and prescribed me a very low dose of propranolol and lexapro. I moved to Minnesota and now am only seeing my family members once every several months. I came home for Christmas and when I look back at the videos and photos, it is actually kind of scary. I looked like I wasn’t even in the room and was moving in slow motion as I helped my niece open her present. I went back to Minnesota after that making it more of a priority of finding out what was going on and about a month later I had my diagnosis, Young Onset Parkinson’s Disease. 

I want to share my personal journey with Parkinson’s disease, from getting diagnosed to any advice I think up along the way. Join me as I open up about my experiences. Personally, I know there is not a ton of information out there so I hope my story can help someone find what they are looking for, as I was. I definitely don’t have all the answers but I think if we share what we are going through we find a lot of people are going through something similar and that can be comforting to know you really aren’t in it alone. Yes, we have great support from friends and family but those going through it only know how hard some days can be and how amazing other days can be.

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