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xaxa last won the day on July 31

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About xaxa

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  • Birthday 03/21/1970

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  1. xaxa

    Newest DBS system st Jude's

    Infinity/st jude device here, too. More later—need to sleep!
  2. Hi mark it’s been along time since I’ve posted I hope you are well I’m writing about Stalevo and Comtan and would like to know why they make me freeze. I am certain about this and realize that most would argue that it’s probably from the increase bioavailability of levodopa, which may be the case in part, but I think that there’s more to it than that and that somehow something intrinsic about this COMT inhibitor is making me freeze. perhaps a different neurotransmitter? what are your thoughts? Thanks and take care xaxa
  3. xaxa

    Timing of Sinemet vs increased dose

    Agree! My "sliding scale" dopamine works best for me....
  4. xaxa

    Parkinson's and tic disorder

    Thank you Dr. Okun! So in those patients that had a childhood onset tic disorder that later developed Parkinson's disease, do you know if there was a familial tendency or was it sporadic or both? Any relationship to ALS? Thanks ps my 10 year old daughter has Tourette's, my mom has bulbar ALS, and my mother-in-law has Parkinson's, recently diagnosed. Lordy. Lol.
  5. xaxa

    Timing of Sinemet vs increased dose

    Dr Okun I am very interested to know why you recommend what sounds like strict adherence to a Med schedule (ie despite meal timing etc). I have heard this before. Do you think our bodies get "used" to a med schedule and therefore perform accordingly? ((If so then maybe it's better not "train" our bodies to be off lol)
  6. Hi dr Okun! I hope you are well. I would like to know what your thoughts are regarding Parkinsonism and dystonias (mostly OMD & torticolis) in the setting of tic disorder. It would seem that I have an imbalance of dopamine rather than a pure loss of dopamine. Somewhat of a dilema, methinks.... have you seen patients like this get relief after DBS? If so, what was their "target" and why? Thank you for your time and effort, as always. Mary
  7. xaxa

    question to the ladies

    This also happens to me around ovulation. It's like clockwork! And insomnia worse at those times as well....
  8. xaxa

    Houston YOPD Support Group

    Hi! Just sent a join request to the group. I live in Austin but travel to Houston often for medical care as well as to Spring to visit my in-laws. Desperate to meet fellow YOPDers! Mary
  9. xaxa


    Hi Mark! Wondering if you might have a pharmacologic explanation for the following "phenomena" I recently had. Last Friday I had general anesthesia. Versed, Fentanyl and Propofol were given to me. I currently take my Sinemet every 3 hours and the procedure was expected to last 3-4 hours. I took a dose at 9am. Got out of surgery and thankfully had set aside a little pill case that I labeled "post-op" that had my PD meds in it and apparently I took that around 4p. Then they also apparently asked me if i wanted one more dose of Fentanyl before I left. Well I'm no dummy so I said yes lol (ask a drugged up person if they want more drugs what do you think they'll say? Haha). Anyhow that snowed me and I slept all the way home and then took a six hour nap! . When I woke up I was sluggish and so a bit slow but walked perfectly normal! Now, this happens sometimes when I wake up from a very deep sleep as well. It's like the part of my brain that tells me I have PD hasn't woken up yet. Bizarre! What do you think about that? I should have been crawling by then. Lol. I mean, 7 hours without Dopamine...
  10. xaxa

    The GI connection

    Hello ! Soon I'll be having an upper and lower GI endoscopy as part of a work up of iron deficiency anemia. I don't know too much about this but I have read here in there about some possible link between G.I. tract and Parkinson's or parkinsonism, so I am wondering: when I get this procedure are there any tests that my gastroenterologist might perform while he's in there, so to speak, that might be useful information related to Parkinson's? As always, thank you for your time. Mary
  11. xaxa

    Celiac disease and Parkinsonism

    Hahaha touché! Love it; thanks.
  12. xaxa

    Celiac disease and Parkinsonism

    Thank you yes that's very helpful Just out of curiosity have you seen ANY dietary modifications help symptoms of PD? Thanks again, Mary
  13. Hi Dr. Okun, I am being worked up for celiac disease, so I am curious: in your experience, have you ever seen Parkinsonism alleviated by strict adherence to a gluten-free diet? How about dystonia? Are you aware of any case reports as such? Or any legitimate studies that might be related? Thanks for your time as always Mary
  14. Sounds like dystonia to me. Probably need to throw more Sinemet at it and/or adjust your settings. I have anterocollis that feels just like you described. Good luck! -mary