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spaxter last won the day on August 7 2016

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About spaxter

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    Burlington, WA

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  1. this seems exciting! ttps://thenewdaily.com.au/life/wellbeing/2018/11/08/michael-j-fox-parkinsons-therapy/?fbclid=IwAR25zL8Cj2jKkzU_lfelEnuepIHNd7_jhAQkJX5-6papeBQrq2yNMUewidM
  2. thank you, i was curious as to the process of DBS, this was enlightening.
  3. i, too, have experienced phantosmia. usually it's kind of a compost smell, but it sometimes changes. i can smell some essential oils so my sense of smell is not entirely gone, lemongrass oil kind of becomes my smell du jour when i remember to put a drop near me, i don't know if that would help someone else that smells a phantom bad odor, but it works for me.
  4. Hi McCall, I think my dyskinesias are from the C/L, they kick in about an hour after i take it, unless the restless movements, tics and grimaces i experience are not dyskinesias! In the morning, when i have not taken C/L for 10 to 12 hours, i have none of the above, in fact, i feel pretty good but for the rigidity in my right arm and hand, which is what i take the C/L for. This involuntary movement kicked in after i had been on Sinemet for about three years. Curious as to why you believe that it is just the progression of the disease itself and why you want to know if someone believes otherwise.
  5. Hi Ellen, I've been experiencing inexplicable sharp pain in my affected leg that has awakened me from deep sleep, also during the day for no good reason, it doesn't seem to be related to the tension of the muscles, in fact it seems like it's on a neural pathway of its own, i was wondering if it was typical of MS, but i felt somewhat comforted by your post, it can happen with PD! I recently started Amantadine and thought it could be related but i see that you are on Sinemet alone. i hope you get some answers as this does not seem to be subsiding.
  6. i find the trekking poles give me the confidence to set out on a long walk. so much better than a cane which skews my posture.
  7. My DH works at a teaching hospital where research on Niagen was brought up enthusiastically during one of their grand rounds. The MDs involved in the research told him that they think one to two grams is therapeutic, whereas the 250mg per day is a maintenance dose in the absence of disease. i am at the "what the heck i'll give it a try" stage with my PD, which is progressing but i am still functioning, When i first started the Niagen, i felt the positive effects immediately, but like with Ashwaganda, it gradually became unnoticeable, but i've kept it up, in case, like with Azilect, it gives me some neuroprotection. is anyone else taking Niagen? Glutathione?
  8. i have been taking Niagen (nicotinamide riboside) for at least 6 months now, along with N Acetyl-L-cysteine, started Glutathione spray sublingually a few weeks ago...all because of the mitochondrial research..recently i have been getting "peak" dyskinesia, tics and grimaces, etc. When i get up in the morning i feel pretty good, do my exercise routine for an hour before taking the Sinemet..then a couple of hours later the tics etc begin...i am wondering if maybe i should cut back on the Sinemet as this could indicate that i am manufacturing more of my own dopamine, or am i kidding myself? it's likely from being on the Sinemet for four years now....My neurologist prescribed Amantadine to mitigate the dyskinesias...my right arm and leg are still trying to curl and my dexterity is still poor., executive function makes me a whooping Olive Oyl, sometimes i actually spin 360 degrees in my indecisiveness.....acch, i don't know why i am writing this.....it's not helpful at all...i thought i would throw it out there because there is so little buzz, perhaps someone out there has been taking Niagen and has had similar responses?
  9. Thank you for the enlightenment and uplifting thoughts, Quietstill, and genden69, you are both knowledgeable and articulate. and visionaries.... i just froze into freakout when i saw the headline. MM, i agree that there are doctors that are less than stellar, but i think that the biggest problem with healthcare monies are the CEOs of the insurance companies! the money is going to their incredible lifestyles rather than the patients, and they give themselves bonuses when they deprive patient care. CEOs of clinics and hospitals do not deserve to be paid more than surgeons etc who are on call and save lives, i think a decent salary is fine, but these millions? absurd! they do not have a tenth of the education, expertise, and knowledge that doctors have (unless they are one as well of course). Single payer programs have problems, but what we have is the improper use of funds, apparently insurance companies profited under Obamacare, just as despicable as the wall street folks that were bailed out and went right back to their old practices and used the money from us to pay themselves bonuses!!! what has happened to civic duty and integrity?
  10. spaxter


    Waruna: When do you take it? morning or nighttime? both?
  11. Did i misread the news or is Paul Ryan going to take steps to get rid of Medicare? there is so much fiction bandied about these days. please tell me this is fiction!
  12. This is an interesting subject. i tried cutting back on the midday dopamine by a quarter tablet, which did seem to mitigate the dip in spirits, but actually felt the rigidity in my arm and leg more keenly that afternoon. and another day i felt the sadness before that dose anyway. i read somewhere that dopamine is a pleasure hormone, so it makes sense that a dearth of dopamine is less pleasure. my neurologist says the timing of the dip means it's drowsiness from the sinemet, not depression. perhaps that's semantics. My recent trips to Chicago and Vancouver Island involved a lot of socialization and that seems to distract me perfectly and the dip was skipped entirely. i think those of you that recommend we ponder less and do more are on the right track. i am overly self-absorbed and reading every signal anxiously. i am fortunate in that there is enough distraction in my life these days to help me snap out of it....in the no stone left unturned department i am definitely going to order some Ashwagandha! now that i have experienced it my heart goes out to all of those that suffer or have suffered from clinical depression...what a brutally crushing disorder! Thank you so much for your input.
  13. Daily nasal irrigation with a Neil-Med or a netty pot. Breaks up the mucus in the nasopharynx..water must be preboiled then cooled to a tolerable heat, tepid is too cold, add a packet of saline/soda...lean forward for first part then tilt back and let it go down the back of your throat...that helps clear up a great deal.. ..although i must say the whiskey sounds way better!
  14. Thank you, Peace, Golden and Swamper, i will give it a try! i forgot that i hadn't added Comtan to my signature, will get on that...i don't know if that would make a difference...it definitely makes the C/L last longer. tomorrow we are flying to Chicago to visit my DH's family, so i will attempt the 1 1/4 midday dose when i get back home to "normal" routine. I so appreciate your feedback!
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