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helplinedonate

EAN

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About EAN

  • Rank
    Newbie

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  • Gender
    Male
  • Location
    Colorado
  1. EAN

    How did you talk to others?

    To Melissab- In case I wasn't that clear, the best release I had with talking was with the therapist- I don't worry about burning them out. They're good sounding boards. otolorin- I just say I have a tremor disorder, but I also do the MJ Fox trick and keep my hand in my pocket or in my other hand when it is bad. I got a lot of comments about my immobile neck, but I just said it was stiff.
  2. EAN

    How did you talk to others?

    New member, first post- Diagnosed at 46 last year, with noticeable bradykinesia, 15# wt loss, bad spinal dystonia, and tremor. I work as a hospital physician/group leader, and had to tell my direct reports and supervisors what was going on because they all thought I had cancer. I don't tell the patients at this point ( bilateral GPI DBS has perfectly straightened my spine), but the nurses know as well- I looked like hell before the DBS, and worked between the procedures- shaved head covered by a baseball cap. I haven't had any repercussions, but since I am in a somewhat difficult to replace position, I'm not too worried about who knows. I let my HR department know (ADA protections, potential disability, and all that). Had to tell my parents/sibs/aunts&uncles going against my sense of privacy (same reason- they thought I had cancer, and my wife made the point that we would want to hear from our kid if they had a major medical issue) Had to tell my kids (tough to hide the exhaustion, spinal tremors, and DBS surgery), a bit tougher conversation- perceptive little bastards. Talked twice with a therapist early on, it helped and I recommend it. You can break down completely in that safe space. All in all, not a pity party now, but I do get tired of my parents asking me how I am doing every week after almost 2 years...(helicopter parents at age 47 is annoying) And I just saw a checkout clerk at the hardware store with a tremor and DBS scars- we swapped stories. If you look well, expect an initial wave of concern that wears off over time as you stay (hopefully) functional for years to come. Honestly, people usually can't tolerate feeling sad for someone else forever, the newness wears off I also struggled with overthinking every little symptom, but am more accepting now, making it more comfortable to divulge the diagnosis when needed, without boring the other person to tears with the details. It is what it is.
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