YOPD. Sounds pretty cool, doesn't it? Well, it's not. But it did bring some cool things into my life, though. It changed me, not just physically because it is a disease, but as a person. The way I see things, the way I live, think, and organize my life. It changed my social life, my plans, and how I spend my time.
YOPD - in case you didn't already know - is short for YOUNG ONSET PARKINSONS DISEASE. You are considered young if you are under 55 at the time of diagnosis. I was 38, so I am in the younger group of YOPD'ers. I had never heard the term YOPD before I got it myself. I had heard of Parkinson's, though. It was something I associated with old age, like most people. There's some level of shame connected to that, being young and getting diagnosed with something "old". I always wait for a reaction when I tell people. Will they look at me differently? Do they know what it is? Will they mistake it with Alzheimers or ALS?Many people have relatives who have or had Parkinson's and they may have a certain experience with it that is very different from mine.
And then sometimes I wonder, is it even the same disease? There are many things about Young onset Parkinsons that's different from regular PD.
Here are some examples:
Slower progression of PD symptoms over time, staying functional and cognitively intact for longer duration
Less frequent cognitive problems such as dementia
More side effects from medications, such as more frequent dyskinesias
Earlier and more frequent dystonias (cramping and abnormal postures)
And socially, there is a difference too, in terms of where you are in your life when you get diagnosed. Most young onset patients are still working, many have young children living at home, and also, a diagnosis like this may come more as a shock than if it happens later in life. It may be harder to disclose the news to family and friends, to know when to tell your boss and colleagues. It may affect your ability to work, depending on your job.
And while no one, healthy or not, knows what their future holds, knowing that you have a progressive disease of the brain, that eventually leads to misery can be stressful. I remember thinking, at the time of diagnosis, about the time I "had left" and the things I needed to sort out before it was too late. But soon after, I stopped thinking that way. I try to focus on the now - and honestly, that's all I have energy for anyway. And seek support in my fellow YOPD'ers. Friends who I feel like I could not live without at this point. Incredible people who came into my life - and keep coming - who make this situation much more bearable. Finding support in people in a similar situation is great, whatever it is you are going through, and it seems that many people with YOPD agree because you could get lost in the jungle of support groups out there, there are so many.
Here are some of the fellow YOPD'ers who inspire me:
Allison Topperwein was of the first people with PD I got in touch with. She was diagnosed at the same age as me, she has competed on American Ninja Warrior, and she fell in love with another Parkinson's fighter. When I saw how Allison was handling her situation, it helped me to see that it was going to be ok.
Jimmy Choi is another inspiring PD patient advocate whose story is truly inspiring. Jimmy was diagnosed at 27. I love watching his TikTok videos and will hopefully meet him when he's in Oslo next time :)
John Riley is an artist who I met on Instagram and who has become a good friend - because of the time difference (and possibly insomnia), he's always online when I can't sleep. This summer, we finally met in person in New Jersey, where he lives. I am so grateful for our friendship and so glad we managed to meet up :)
Vivek Puri was diagnosed the day after his third child was born; he was 38 like I was and has lived with PD for nearly ten years. Vivek helped me write my coming out story - I reached out to him after he commented on one of my posts in a support group, and since then, we have become good friends and realized we have a lot in common both in terms of symptoms and sense of humor. What we don't have in common, however, is our rock climbing skills. Vivek uses climbing as his main form of exercise, and I think he kicks ass!
I have also been lucky to meet Anders Leines a couple of times. Anders is an excellent filmmaker who lives in Oslo. Anders was diagnosed in 2010 and has since made several films about PD. If you haven't heard of Anders or seen his films, you should.
And the list could go on and on. So many cool people have Parkinson's!
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