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What's working What's not

Diagnosed 18 months ago

Mild tremors left arm and hand

Controllable and not affecting lifestyle (yet)

What have I noticed?

a) Coffee amounts seem to have an affect on tremors both good and bad. About a pot of coffee a day seems to be the most effective amount. Any more or any less seems to increase tremors slightly

b) Out patient surgery on scalp when local anesthesia applied to scalp my shoulder, arm and hand tremors were uncontrollable. To the point nurse had to secure my shoulder and arm to allow physician to complete surgery and apply stiches. After surgery shoulder and arm tremors returned to the normal controllable mild level. I can only wonder what the connection is

c) Active work using my hands and arms keep tremors at bay to a point I do not notice them at all

d) Every night when relaxed in bed my left arm and hand default to super mild continuous tremor. Funny thing is when I rest the side of my head on my hand I feel and hear a rythmic humming vibration. Tried to explain it to my neurologist but he could not comprehend my description.

e) I suspect I had PD much sooner than I was diagnosed. For the preceding couple years I suffered with severe hand cramps when driving for substantial amounts of time. Also had noticed that my left foot frequently felt numb when sitting in recliner.

f) Seems when I'm stressed with a close ball game on TV the tremors increase in frequency and intensity.

g) I'm really interested in what others are experiencing. Good or bad and the actions leading up to the change. In other words what actions do others think they performed when noticing a change in the norm.

h) Who's been stung by a Bee, bitten by a snake or a jellyfish, taken a new medicine or tried a new excercise that affected the norm.
I've been bitten by spiders and aggressive fire ants working in the garden and had not noticed the tremors during that time but of course it could have been just focused on the local pain distraction.

i) Noticed that when I ride my Harley Motocycle I do not notice any tremors. Maybe tied to the vibration of the motor but I paid attention and the tremors are not apparent when riding

It would be naive to think there isn't a cure or an effective medical treatment out there somewhere that couldn't either cure or at least hold the symptoms at bay.

But it's going to take a lot of research and a lot of individuals noticing, acknowledging, recording and sharing information.

Who wants to test a jelly fish bite or Bee stings to further the cause 😀
just kidding (Maybe)

I'm waiting on the person who is willing to stand up and say:

"I know this sounds crazy, makes no sense and I sound like an idiot but when I did this or when this happened to me my symptoms ......................"

  1. Jimo, your observation about riding the Harley is correct: vibrations lower tremors!
    I am actually working on a vibrating wearable harness to make this happen, and on the first two people to try it the results were good on the first to amazing on the second one.
    If things go well, this could lead to making a very affordable solution to tremors, talk difficulties and probably other symptoms.

    1. thank you so much for taking the time to share! Just wanted to check in and see how you have been doing lately? We're here for you. Kindly, Jessica, Team Member

      1. Working at home on the computer helps me, but not sure how long that will last. I can still drive with no issues. Legs getting tingling, pins and needles, or legs feeling weak are new symptoms I have been getting lately (not sure if it is something else like lack of sleep). I have started playing Pickleball and my symptoms are gone for the most part during play, but trembling starts after I finish.

        1. Yep, tingling both legs and arms when in relax mode.
          I'm almost 3 years in since diagnosis and confirmation.
          In hindsight the symptoms were showing up before I was confirmed.
          Still not on any meds and can troll symptoms pretty well with only my wife noticing.
          But..... good attitude considering.
          I've pretty much ignored the symptoms so far.
          I do notice a slight progression though.
          But if I had to aquire a disease PD isn't the worst scenario, could have been much worse.
          My thoughts are to avoid meds as long as it doesn't affect quality of life but not sure that's the best approach.
          Seeing neurologist every 6 months so thinking he will advise when to start meds.
          It's my understanding that effectiveness of some meds wear off over time.
          Coffee .... (lots of coffee) seems to have a positive affect on minimizing symptoms.
          Good Luck
          Keep me updated on anything that you experience that has a noticeable impact

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