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Melissab last won the day on November 24 2017

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About Melissab

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  1. Melissab

    Just got the news 😕

    Welcome! I’m 38 and was diagnosed in July, with a 13, 11, and 2 year old. I had been having troubling issues for more than a year so a diagnosis actually was a relief-validated I wasn’t crazy! Now that time has passed I can’t lie and say I don’t have my doom and gloom moments, but things are ok with a few meds and a pretty positive attitude and, of course, exercise. I work full time as a school district asst. superintendent and am 1/2 done with my doctorate which I will finish early. I don’t want to be studying away family time and I do think this disease has made me see priorities a bit clearer. I wasn’t a pro athlete, but I ran several marathons prior to diagnosis and am still running. You’ll be okay! Some people took the news worse than others (of those that know) but with time they’ve gone onto normal again.
  2. Melissab

    New guy here - a journey I'd like to avoid

    What does PWP mean? I’m sorry!
  3. Melissab

    New guy here - a journey I'd like to avoid

    Don’t know if I get shakes at night while sleeping, but they are bad when I wake up. What I do get at night is strong “twitches” as I fall asleep from time to time. I’ve been told by one neuro that this isn’t typical of PD and my MDS didn’t comment on it at all, so this may be totally unrelated to my PD and just my own weird thing!
  4. If you read my post on frustration finding PD supports that are actually accessible for young, working people, then you probably understand I’ve had to find alternatives to programs that work balance, core, strength, and stamina that fit into my schedule and that are comfortable to do. Tried yoga but for me that wasn’t enough movement. I run multiple times a week (though I’m far away from my marathon person of four years ago, sadly). Anyway, I stumbled on a program available online since there are no studios by me and it’s pretty inexpensive. The best part is that they encourage shakes!! So I could probably attend an inperson class and not feel self conscious:). It’s called Barre3 and it incorporates Pilates like movements but also light weights, lots of repetition and a ton of balance work! Been doing it for almost a year and my MDS said my exercise regime is really a good one. Every time I do a workout I think of you guys that are on my boat so figured I’d share. Hopefully this doesn’t come off as a promotional thing, as it definitely isn’t, just want to share something helping me fill a gap. Take it or lose it :).
  5. I live in a pretty large city just a few hours south of Chicago. We have several large hospitals and a neurological institute. From the very beginning of this journey I have found that young onset PD is just not the same in terms of access to services. First, I had to go to Chicago to actually get a MDS to diagnose me correctly. I want to do all I can to slow this process down and would love to do Rock Steady Boxing, but it’s only offered during the days and I work. I need to do LSVT Loud, but again...no way with a working schedule. As if this disease isn’t isolating enough, I feel like because I’m not in the older group of people there is not any support for treatments I need. I really am just venting. Anyone else finding this to be the case?
  6. Melissab

    Photography and Parkinsons

    I am! It started as a hobby and has sort of become more (weddings, newborns, seniors, families). I am a little self conscious about the tremor but I doubt people notice too much. You can see my latest work on Facebook @bloomphotosforstjude
  7. Melissab

    Similarities between Essential Tremor and PD

    I think switching to a MDS is the best plan! Good luck to you; it can certainly be a frustrating road!
  8. Melissab

    Similarities between Essential Tremor and PD

    I’ve read some articles about the possibility of a connection,but at this point they are different diseases and require different criteria for diagnosis. To make things even more complicated, they can occur together. I have a resting tremor, but I also have a postural tremor, for example. This is a really good article explaining those overlaps and differences: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475963/
  9. Melissab

    Official diagnosis today

    Just a quick update...I did end up doing genetic testing and discovered my early onset is due to a Parkin mutation (PRKN gene). It doesn’t really change anything though I did inform my siblings so they are aware and it does give me some info to pass along to my own kids when they are older. Did anyone else have this done?
  10. Rick, best of luck with DBS this week!!!
  11. Stump, you are right; sorry for the mix up but thanks for the correction! Yes, I am right handed but tremors are on left. My concern was the shaking foot on right side!
  12. I was diagnosed with early onset PD a few months ago. Always, my tremor has been left side only and that's also where the MDS notes rigidity and bradykenisia. I am only on amantadine. I've noted my right foot tremoring a few time but usually it was after exercise so haven't thought much of it. Today on my way to work,while driving, my right foot was quaking on the gas pedal and I couldn't get it to stop without moving my whole leg away. I really hope this is coincidence and not progression. In my left side, my hand is most affected, so is it even normal to "skip" to another limb when it does start to progress?
  13. I am newly diagnosed with early onset PD (38 years old). For some time before my diagnosis I had vivid dreams of trying to run but being unable to move my legs quickly enough. Since diagnosis I have had several dreams of similar nature and even some of falling and being unable to right myself. I'm not concerned about these dreams, as my dreams are almost always vivid and somewhat scary, but I find them interesting, both in that they preceded a diagnosis and that they continue. Anyone else?
  14. Melissab

    How did you talk to others?

    Thanks to all for your comments. Even a week later, I feel better overall. A therapist is a good suggestion that I should probably look into more. I appreciate all the suggestions and support!
  15. Melissab

    Official diagnosis today

    I'm an avid runner, have been for years. It's actually one way I realized something was going on...I was so tired and just felt stiff and like my legs wouldn't "go". I plan to keep this up especially now! I do a low impact weight class a few times a week as well.