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Young onset

I'm adding to this discussion more out of fear and not a diagnosis as of yet. My father and grandfather both have/had parkinson's disease. My father was diagnosed at 59 years old. I am 40 years old and have begun to see symptoms in myself. I have an appointment with a neurologist at the end of october. Has anyone else been diagnosed with young onset parkinson's and if so what were your first symptoms? I realize it effects everyone differently, just wondering if I should be concerned. Thanks in advance.

  1. Hi, @cbl40 - Appreciate your post! I can definitely understand your concern here. Several of the advocates who write for this site were young-onset, and we have some more articles to read about young-onset here: https://parkinsonsdisease.net/?s=young+onset. Hope you can keep us posted after your neurologist appointment. Take care! - Chris, ParkinsonsDisease.net Team

    1. I’m also 40 w a finger tremor, stiff, extreme fatigue, constipation.

      Wondering if anyone has started w one hand with pruned fingers as if you just got out of a pool. I have this and I read an article suggesting this is an initial sign of Parkinson’s that people get way before being diagnosed.

      My neurologist is waiting for the postural/intention tremor to be at rest or more symptoms before diagnosing it. Any initial symptoms for young onset be helpful. Not sure how to post my own thread. Thx

      1. My first symptom when I was 47 was my right arm stopped swaying when I walked. But if I thought about it then my arm would start working. But my right hand, at about the same time, felt like I couldn’t flex my hand as quickly as before. I attributed it to the fact that I hurt my right shoulder doing lat pull downs. But also around that time there were moments when I couldn’t type with my right hand very well. My fingers were a little stiff...wouldn’t do what I was telling them to do. This was all two years before I was diagnosed. Or about 5+ years ago. So was diagnosed with young onset two years later but I was old for young onset (if that makes sense since I was 49). Am 53 and it is still on just the right side for the most part. Hope it stays over there for a while.

        1. Thank you for your reply. That is helpful to know. I also feel flexing my hand has changed. Also, my arm is exhausted just from writing a small note. I have lots of muscle spasms throughout my body. Definitely my back, neck and shoulder are always stiff. I'm had a negative MRI and EMG. So, because I also have periodic limb disorder in my sleep which was identified by a sleep study, it is looking like the onset of Parkinson's with an atypical kinetic tremor to start.

          I am just not sure if I should push for a DatScan or if I should start meds if they do determine I have early onset. I've read conflicting info as to whether they can actually prevent you from losing more neurons and prevent more disability.

          Do you have any thoughts on this? 49 is still young for Parkinsons. Are you able to do most day to day activities?

          Thanks again. The community is a real help. It's so anxiety producing to not know for sure what I'm experiencing. But I do know none of it is normal.

          Jennifer

        2. Hi Jennifer!

          Yes I can do most things but my typing is still slowish. I also don’t go on super long hikes but I do still work full time. Writing with a pen really sucks though so I don’t do more than sign with my shaky signature. Lol.

          I went on ropinirole pretty early and ramped up to a therapeutic dose in a few months. It helped with my symptoms so that confirmed the diagnosis. Then after a year I went on carbodopa/levodopa and have been on that since as well. The literature is a little messy about if you should start sooner. But by the time symptoms begin you have lost a majority of the cell bodies in the substantia nigra already so I am glad I went on the meds sooner. I can use my right hand now and I am right handed! I do have an increasing amount of resting tremor that comes and goes.

          I would suggest getting more than one opinion from a neurologist. I eventually went to the movement clinic at U of Virginia and they were great. The younger physicians there encouraged me to being open to starting therapy earlier so that is what I did. My Dad also has PD and he was encouraged to wait as long as possible. But not sure that did much for him as he has had it 17 years and can not walk anymore (hardly). He is 80. Bottom line, get advice from a movement disorder specialist preferably from a university based neurology practice. They will have the latest data.

          Jeff

      2. Hi,
        I am in disbelief that I am writing this. I believe that my 12 and 10 year old daughters have either PD or god forbid MSA. They have not been dxed as of yet.
        They have had a strange history. They both started about a year and a half ago completely out of the blue with tics, visual and auditory hallucinations. They are now both symptomatic with orthostatic hypotension. They both have these odd events very so often where they can’t move their legs and/or speak. It can last anywhere from an hour to 8-10 hours when they regain use of legs and speech.their toes also twitch in their sleep.
        My oldest has a tremor in her right leg at rest. My youngest keeps telling me that her eyes are so dry and burn. I have also heard her slur her speech.
        My oldest has been treating with a neurologist at a children’s hospital . She is finally seeing my youngest on Monday.
        She has kept telling me that she thinks these are FUNCTIONAL neurologic symptoms along with the OH. She last saw my oldest 3 months ago telling her to drink more fluids and eat salty snacks.
        I believe she will realize when she sees my youngest this Monday. I am sure part of it is that children are not supposed to get PD or MSA!,,,,who would ever think?...
        I am praying for PD but it is sounding like MSA
        I donT know where to 5urn. What kind of life can they possibly have at such a young age with PD and god forbid MSA.

        1. Hi Kim32 - Thanks for taking the time to tell us more about your situation. I can't imagine how you're feeling right now. You have this community's support whatever the outcome may be. It's heartbreaking to not know what's happening to a child. Please keep us posted. Thinking of you and your family. Chris, ParkinsonsDisease.net Team

        2. As a parent, I can imagine your fear and concern for your kids right now @kim32. I hope you get some answers and a plan soon for helping them. Please let us know what happens. April - ParkinsonsdDisease.net Team

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