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    • #20167
      Ian Carter
      Participant

      This is my first post (ever on any forum lol so bear with me while I try to make sense)… but I have quite a bit of history of Parkinson’s Disease in my family, my father being the most recent to be diagnosed. I’m starting to show some signs (I’m 41 y/o) and will be meeting with a neurologist soon. Along with the excessive fatigue, depression, rigidity, confusion, etc, that has progressed over the past couple of years, I’ve quickly developed a resting tremor in my left hand (mostly thumb) over the past couple of months. I know many of these symptoms can be a sign of so many other things so I’m often second guessing what my gut is telling me. With that said… My question is: In the very beginning of showing signs and symptoms, is your resting tremor a constant thing or does it sometimes go away or not seem as bad? Like in the mornings when I first wake up, it’s almost like I don’t have a tremor, but it gets worse throughout the day.

    • #20170
      Jeffery Hill
      Participant

      Hi Ian.  A flutter of a tremor in my left thumb was the first symptom that caught my attention.  Because my father had had PD I started digging into the list of symptoms and realized that I also had lost my sense of smell years earlier (I did not know this was a PD symptom) and was not swinging my left arm when I walked (while tightly clenching my hand). Like you, my tremor was not constant.  It really responds to stress, and disappears as I sleep. I was officially diagnosed just over 4 years ago.  Over that time my tremor has expanded to my whole left arm from the elbow to the hand, and I believe it’s now going into my left thigh.  Exercise and stress avoidance are the best therapies for me…

      • #20180
        Ian Carter
        Participant

        Hey Jeffery! Thank you so much for responding… that was very helpful for me. I have also lost my sense of smell (it’s probably been a couple of years now since it started), and like you, I did not know it was a symptom. Since digging around and doing some research, I’ve found that I’ve had a lot of these symptoms for years. I feel like I’m finally starting to find all the pieces to this puzzle. The next step is hoping that the neurologist I’m being referred to will actually listen to me and take me seriously. Whether it’s PD or not, I just want some real answers.

    • #20171
      Ian Carter
      Participant

      Hey Jeffery! Thank you so much for responding… that was very helpful for me. I have also lost my sense of smell (it’s probably been a couple of years now since it started), and like you, I did not know it was a symptom. Since digging around and doing some research, I’ve found that I’ve had a lot of these symptoms for years. I feel like I’m finally starting to find all the pieces to this puzzle. The next step is hoping that the neurologist I’m being referred to will actually listen to me and take me seriously. Whether it’s PD or not, I just want some real answers.

    • #20177
      John Carter
      Participant

      Ian, I was diagnosed with PD in 2017 at the age of 70. Of course now I realize I had PD motor symptoms much earlier. As I recall I had some type of resting tremor with my left hand; it was most noticeable when I awakened in the morning and then it would diminish and go away in an hour or so. I still have it, but the morning tremor is a little worse now, but still goes away in an hour or so (as soon as I become fairly active in the am). I don’t know if this helps, but please continue to document your symptoms as they will probably be useful to others in the future; hang in their fellow Parky…

      • #20181
        Ian Carter
        Participant

        Hey John,

        Thank you for your response! I’m definitely keeping track of all of the symptoms that I’ve been experiencing over the past number of years. The tremor was really what made me seriously take a look at all of this. It’s interesting that the two folks who have responded to me (you and Jeffery) both had tremors starting in their left hand like me… And I’m glad to hear that this is something that comes and goes. Does any of the PD medication help you?

    • #20188
      Russ Hudson
      Participant

      I had all of your symptoms, including the left thumb tremor. They are all gone now, after taking butyric acid supplements. I highly recommend it.

      • #20189
        Ian Carter
        Participant

        What’s with the left thumb?? lol So interesting. Thank you, Russ for your input.

    • #20194
      Beth T Browne
      Participant

      I am 84 this month.  No history of Parkinson in my family.  When I was 80, I had shaking in my right hand.  I also had sleep problems which I didn’t understand.  I moved 60 miles when I was 80 to be near my daughter.  That as when I really noticed the shaking.  I could barely get the food to my mouth.  I thought it was too much thyroid, but my doctor checked me twice and she is the one who said I need to see a movement doctor.  That doctor said I had two kinds of tremors, and sent me for an MRI of the brain.  When I went for the results, she said I had no Dopamine.  My daughter asked about the rest of my brain and she said it was okay.  I told her I was not pulling up name I knew very well, laying things down, constantly, and not remember where.  So, I am still concerned.  I just did a DNA test to see what diseases are genetic.  I can hardly wait to hear the results.  I am thinking I may have got this from something the condo I owned and lived was using to spray for insects and plants.  Perhaps Paraguay, that the news letter spoke about yesterday.

      • #20195
        Ian Carter
        Participant

        Sounds like you’re really in search for some answers, Beth. I hope you find them. Has this forum been helpful for you?

    • #20196
      Beth T Browne
      Participant

      Hi Ian, I have been on here a lot trying to learn how I got this so late in life, and asking questions.  I lost my sense of taste 2 weeks before Thanksgiving.  It was awful.  I did not have COVID, was checked.  My movement doctor said it was Parkinson’s.  I am starting to get some back, and she said I would not.  I did ask on here about lost of taste, but got no response.  I still walk, but I can tell the legs are starting to get a little funny.  I walk daily. I am thinking it might be a chemical where I once owned a condo, but maybe the DNA will tell me more.

      • #20204
        Ian Carter
        Participant

        I really hope you find the answers you’re looking for, Beth, so that you can have some peace of mind and can know the best path for you.

        • #20205
          Beth T Browne
          Participant

          Thank you Ian.  Have you every heard of  Bill Bucklew?  He has had Parkinson’s a long time, but you would not know seeing him.  My son just sent me a YouTube.com TEDXChicago show of him, and he is an amazing man.  I tells a story you find hard to believe, but with some humor.  He is saying some great things.  Hope you can pull it up.

    • #20199
      John Carter
      Participant

      Ian, it is curious about the commonality of the left-hand and the early motor symptoms; I am right handed by the way. I’m taking carbidopa levodopa. I don’t seem to derive a significant benefit from it, but I know when I don’t take it, I tend to get cramps in my legs, particularly in the evening. One Motor symptom that was pretty obvious before I was diagnosed with PD was that I noticed a definite weakness in my knees when I would start writing my bike in the morning.

      • #20201
        Ian Carter
        Participant

        Hey John. What did that weakness in the knees feel like? If you can describe it…

        • This reply was modified 4 months, 2 weeks ago by Ian Carter.
    • #20200
      Andrew L.
      Participant

      Hi Ian:

      Am a young 64/athlete. Diagnosed 2 years ago. First noticed tremor in left hand 3 years ago. Followed by what I thought was a frozen should (in hindsight it was PD onset.) Followed by tremor in right leg/ esp foot. Was then diagnosed (had decrease L arm movement, no facial expression, emotional lability.) First neuro I saw told me the only way to get rid of tremor was DBS. Wasn’t true, Carbi/Levo + Selegiline did it. Now only tremor when agitated/stressed or after significant exercise. Not noticeable by anyone but me. However all symptoms are worse at night when tired.  It is what it is, my advice would be to stay positive and get into the best physical shape of your life if your overall health allows it.

      • #20202
        Ian Carter
        Participant

        Thank you, Andrew! I do workout quite a bit as I’m a former athlete and know the importance of staying healthy and fit. My guess it’s going to take a lot of self-advocacy to get the care I need.

      • #20217
        John Carter
        Participant

        Hello Ian, I began noticing weakness in my knees two to three years before I was diagnosed with PD. When I got on my mountain bike and began to ride, usually with my wife, I would feel a distinct weakness under my patella on both knees. The faster I would pedal, the more noticeable the weakness would become. I wasn’t too worried about it, because after my knees got warmed up I was fine meaning I did not feel any weakness; it disappeared and I felt strong on the bike. Also, after I was diagnosed with PD, I was taking spin classes with my wife and I began to notice something else. My legs were getting progressively weaker meaning I could not maintain the RPMs I was used to maintaining. Also I could not achieve the maximum RPMs as I had obtained one to two weeks earlier. I suspect this is a common early motor symptom with PD (if you’re a bike rider). I say this because as part of my diagnosis for PD, I had a brain CAT scan. And after getting the scan, the radiologist technician ask me if I ever experienced weakness in my knees. I think he asked me that based on the type of prescription for the scan; he did not know anything about my history riding bikes. The scan turned out to be normal; nothing to suggest I had PD.

        • #20248
          Ian Carter
          Participant

          Hey John, thank you for sharing your experience. I’m so sorry to hear that this has affected something, that I assume, you love and enjoy doing. I asked about the experience with your legs because I sometimes feel a weakness when I’m going up or downstairs that no one has ever really been able to explain to me, I always just chalked up to some sort of nerve thing. I still kind of think it’s a nerve thing, but I’ll keep this in the back of mind as I progress through the phases. Thank you again!

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