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Diagnosed at 33

I was diagnosed with early onset Parkinson about 5 years ago, when I was 33 years old. I’m tired of taking medication. It seems like that’s all I do Sinmet 25/100 4 X a day, Mirapex ER .375 2X a day, and Benztropine 0.5mg 2X a day. I also get Botox injections every three months in my shoulder, neck, and behind my ear. Anything to try and get relief from pain and stiffness. My neurologist said I have to limit the amount of dopamine I get because I am so young and I have to space it out over my lifetime. I don’t share with my employees whats wrong. Even when it’s really noticeable. I know people don’t understand and they are quick to say why are you shaking or are you nervous? REALLY!!

We had a team building day at work and one of the stops was a game where you had to be blindfolded and they turned you in a circle. (I wasn’t going to be left out) You had to put a sticker on a board being guided by only your teams voice. Well not only being twirled around, but having my arm out, I was a stumbling mess (bad move thinking I should try). My gait was way off and my tremors were very noticeable. I had cut that game off before I fell in front of everyone. So being 38 now and seeing myself slowly getting worse sucks. My true friends understand and we can laugh at things. We went for drinks one night and the bartender brought my drink out and it was almost to the brim. My girlfriends looked at me, the glass, and back at me. I asked for a straw and sat it on the table. We laughed knowing if I tried to drink from the glass I would be wearing that drink for the rest of the night. Same with makeup my husband walks away when I put on my eyelashes. He thinks I’m going to poke my eye out, when I’m applying them. I have to assure him I have it under control. It might take me a bit and pure concentration but I will get those damn things on.

Thank you for letting me share.

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Comments

  • Bella
    6 months ago

    i was diagnosed 7 yrs ago and like you i have not told my colleagues at work and it was easy to keep it a secret then because i don’t shake or tremble; i just get very weak and stiff especially in the last six months. i can hardly do an hour zumba now but i still try. let’s keep on moving and being positive for disease modifying treatments (gene and stem cell therapy) for PD are really on the horizon!

  • Jessica.Hall moderator
    6 months ago

    Hi @bella– we appreciate you being here and sharing with us. You seem to have a positive attitude, and are dedicated to keep moving, which is so inspiring! It is totally understandable to not want to share with colleagues. I thought I would share this article, if you do decide you want to start a conversation-https://parkinsonsdisease.net/living/talking-about-pd-with-others/. Wishing you well. Kindly, Jessica-Parkinsonsdisease.net Team

  • Chris H. moderator
    6 months ago

    Hi, @mistiew – Thanks so much for sharing your story! It sounds like you have a great support system with your friends. Being able to laugh and find humor can be really impactful. I can understand not sharing your PD with your employees. In case you do want to start that conversation, I thought I’d share this article: https://parkinsonsdisease.net/living/talking-about-pd-with-others/. Take care! – Chris, ParkinsonsDisease.net Team

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