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About fire1fl

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    North of Disney in UF Health Country
  • Interests
    PD Cure. Reading. Outdoor sports when the weather suits.
  1. Hiccup

    https://www.nytimes.com/2017/07/20/magazine/why-couldnt-this-man-stop-hiccupping.html?rref=collection%2Fsectioncollection%2Fmagazine&action=click&contentCollection=magazine&region=stream&module=stream_unit&version=latest&contentPlacement=8&pgtype=sectionfront As the title suggests there is a lot about hiccups and the nerve origins that create them. Near the end of the article the "sugar cure" seems to be effective.
  2. Seen this? : https://blogs.microsoft.com/transform/feature/my-god-its-better-emma-can-write-again-thanks-to-a-prototype-watch-raising-hope-for-parkinsons-disease/#sm.0001hhmaddi3leb1z0u1vfh39zjap&WT.rss_f=At
  3. Next up - a unified theory?

    There seem to be multitudes of genetic and microchemistry events producing new research results. How can all this closely parallel research get conjoined to produce one theory with (perhaps) multiple entry points... but nevertheless a global picture? Here are two papers published in widely disparate publications and showing two disparate approaches to the same illness (though not the same symptoms being studied). How do these researchers and their knowledge cross over barriers? Are the patent wars of big pharma hindering synergism in the next discoveries? https://www.scientificamerican.com/article/cell-therapy-2-0-reprogramming-the-brain-rsquo-s-own-cells-for-parkinson-rsquo-s-treatment/?WT.mc_id=SA_DD_20170411 and ...http://ir.prothena.com/releasedetail.cfm?ReleaseID=1019672...
  4. The article https://theconversation.com/how-i-used-math-to-develop-an-algorithm-to-help-treat-diabetes-69606?xid=PS_smithsonian mentions other chronic diseases as potential targets of this approach. Are you aware of any big data projects that research the variability of PD symptomology versus the spectrum of possible treatments? Would this approach provide any added benefit or is anyone even building the requisite large sample database?
  5. A Little Help Please

    You did not mention (or I missed) your location. If you have not explored the National Parkinson's Foundation site for "Centers of Excellence", here's the place: http://www.parkinson.org/find-help/resources-in-your-community?_ga=1.65420590.1638494502.1484682351 This would be a way to see how many advanced treatment centers are within your reach.
  6. This thread seems disconnected from its title. Too bad, because I was looking for any anecdotal connection between flouroquinolone (one form is Cipro) toxicity and damage to the gut microbiome sufficient to cascade into Parkinson's. ( http://www.cell.com/cell/fulltext/S0092-8674(16)31590-2 ). Until someone investigates whether there is a common path, I remain in my mind a suspected case of one data point, often dismissed until much later when data finally proves otherwise (see H. pylori http://www.cdc.gov/ulcer/history.htm ) Any other PD cases out there with history of antibiotic treatment shortly prior to tremor and other symptoms?
  7. NY Times item by Tom Friedman

    "As much as I like you and value your opinion, this political post does not belong in this forum." Stop
  8. Can anyone relate to these leg symptoms?

    James, I was gearing up to offer some advice when I saw that your neuro appointment was September 2nd. Any outcome you'd like to share?
  9. Promising new treatment around the corner

    At first I was resistant to the idea of accelerating FDA approval to Phase 3 Trial - but two things persuaded me that the risks are weighing too heavily. First, it is not really a drug to use stem cells.. They are genetically identical to the donor=recipient - just without a certainty of being clear of unknown disease-causing mutations that seem to arise in adulthood (i.e., if PD has a genetic component then re-introducing identical cells with those same genes would do nothing). Aside from being living human cells, there is no difference in this from fecal transplant insertion in which the patient's own intestinal biome is reintroduced to treat bowel diseases and restore that critical colony in the intestines. (Given all the effects of wrecking the internal biome with antibiotics, poor diet, chemical exposure - it wouldn't be surprising this also has a role in the onset of PD.. Bacteria, fungi, antibiotics,and viruses can all either cross the blood-brain barrier or produce chemicals/toxics. that can.) And that brought me to the second reason I support shortening the approval regimen - I read the list of medications currently in use by "Dianne". Each of those drugs passed the more rigorous FDA protocols - but it's anyone's guess how they interact with each other especially long term.. If people are going to be pharma experiments they should be allowed to choose stem cells as just another risk factor in the combined elevated risk of being a living medicine cabinet.
  10. Your post indicates that you live in Maryland. Use "Parkinson's support group" as a search term to find local chapters of various kinds, one or more of which may be close to you or close to what you're looking for. I don't have a lot of advice because I'm relatively new to the disease but a theme that resonates with me is the more exercise, healthy diet, and in-depth research I can do about the disease the more I will forestall intensification of symptoms. There are some interesting exercise programs showing results (slowing progression) available as illustrative YouTube videos. One shows that a test in which the non-Parkinson's partner rode a tandem bicycle with the Parkinson's partner the NPP was able to drive the pace and distance farther than would otherwise have occurred. Likewise, there is some research in something called "Rock Steady Boxing" in which noncontact sparring for exercise is showing some positive results. Group exercises and classes will tend to escalate your participation in your own care. If your introversion or possibly lack of results from joining an exercise support group get in the way of your future exercise then start your own support group that is more to your liking. In my community there are exercise groups of every kind one can think of, and many of them have overcome the shyness and introversion of new members. It's not clear what your health insurance options are. Lucky for me, I am Medicare eligible and have expensive but broad-based secondary coverage. So far that means I'm able to see a physical therapist once a week for a 45 minute-one hour appointment. It is right next to the gym where I regularly work out. The PT has been gradually increasing the amount of exercise with which I am being challenged. I also volunteered for a research study on cognition effects that included a free MRI brain scan, which I view as establishing my personal baseline for some future point when I may need (or be evaluated for) deep brain stimulation. Whether the MRI or cognition test show anything at all is still open-ended, but it helps to keep engaged with what's going on especially if you have a research center like the NIH close by. The original post was about how to get motivated to exercise. I think the hardest part is considering (and making the decision) that daily serious exercise will be the new lifestyle (I call mine Parkinson's+).. And what is so totally awesome is that my partner/caretaker joins in and motivates me mightily with her expectations that it's not a chore, but rather a lifestyle. Hope this helps.
  11. Whole body vibration machine

    March 2016 "Scientific American" shows mechanisms of the glymphatic system (surrounding the brain) and its enhanced activity during sleep(flow rates 3 times higher than pressure gradient alone). However it's all mouse modeling. Responding to neck and shoulder muscle freeze/spasm, I have started (x2 as of today) using electromechanical vibratory massage to relieve neck/shoulder pain and any blockage of the glymphatic flow (I hope) prior to night sleep. In theory the glymphatic system "washes out" the trash from the brain - expended neurotransmitters, chemical fragments, metabolic wastes, anything not adhered to a receptor site. Has anyone studied the 24X7 liver and kidney output of residue for alpha-synuclein or other related residues, PD vs. control? Could PD be exacerbated by mechanical failure of the brain flushing, among the many chemical interactions occurring? I know that's a big picture question and I'm only a case of one, but the total body shaker seems to have a similar intent. (Massage has helped my sleep even though I still need a lot more (10-12 hours) than I'm used to getting.).
  12. Question about Medications and DBS

    I was diagnosed three months ago (in your clinic!) and have not reached the point of requiring medications or other treatments. I am still on the exercise end of the treatment spectrum (although experiencing the early onset fatigue that others have said). Nevertheless, I have of course been reading everything I can get my hands on including both of your books. In the 2013 book I was surprised to see a reference to a 70-year-old as being outside the parameters for DBS. As I am just about that age it is a concern in two ways: first, will I be excluded from receiving DBS when my time comes because of age?; secondly, since DBS seems to be the treatment of last resort, despite being touted as more effective than any of the drug treatments, should we be discussing DBS now and bypassing all the drug trials? I have plenty of other questions but I'm still researching the forums to see if any of them are already answered.