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      Línea de Ayuda 1-800-473-4636

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About fire1fl

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

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  1. Do any of you here sleep - I get little or none

    A family member just received advice from a sleep disorder specialist (physician) to use timed release melatonin. She immediately achieved relief from awakening multiple times at night. She is not PD but has had intractable sleep issues and, like you, has tried "everything". https://www.remfresh.com/remfresh-continous-release-melatonin-exceeds-target-sleep-maintenance-threshold-6-7-hours Hope this helps.
  2. Music and Parkinson's Disease

  3. Those diagnosed over 60 and their experiences

    Over 60 when diagnosed, but not living alone. My doc says using medication is the most important first step to normalizing daily life and there is no evidence that Sinemet accelerates the illness progression. Suffering without medication is a common issue with my generation schooled on the hazards of addiction and dose accommodation but neither has been shown to be an issue in PD meds. Suffering is just that, and ought to be overcome with meds, healthy lifestyle and exercise.
  4. How to increase Energy PD patients

    What is helping me: 1. My caregiver/wife starts me each day with a green smoothie (recipes in "Simple Green Smoothies" by Jen Hansard and Jadah Sellner). (All the roughage you need as part of a plant-based diet with animal protein consumed rarely and small quantities). 2. Physical therapy once per week (45 minutes balancing, opening, stationary cycling, agility ladder, special P/T program devised for torturing the PD out of me). When I started I was totally out of shape. Gradually returning to good condition and injury-free except the osteoarthritis in the knees that actually gets worse if I miss a day exercising. 3. Experimenting (this week with Zumba at local senior center, previous week with boxing). I may learn to jump rope - failed abysmally on first try. Same for banjo and guitar playing. 4. Gym workout (about 45 minutes - 1 hour) every non-therapy day (with a rare day off). 5. One-hour massage every other week. I did not start this all at once, but to have a life that's worthwhile I've found this is what gets me there. I also get fatigued and sleepy so I rest for one hour after lunch. I do not skip doses (Sinemet 3 daily 4 hours apart). The exercise can cause me to be "off" earlier than normal (3 hours or less) but I hold out to the scheduled dose time unless I REALLY need relief). That's about it. Not for everyone but then everything about this condition is individual except the endpoint.
  5. Ultrasound for tremors

    This topic should be on "Ask the Doctor". Ultrasound as a medical treatment could (depending on what it really is) have some dire consequences. Likewise, if using ultrasound as a medical treatment it should be documented research accepted by FDA as proving the efficacy of this treatment. Anything else is in the realm of vitamins and supplements.
  6. Gulf War service and PD manifestation

    I'm a recent participant in the MJF worldwide study of PD medical histories but this post jarred my thought about what is not included in the questioning - exposures. When one considers the numbers of military bases worldwide that have contaminated water supplies and/or exposures to uncontrolled chemical uses, it's surprising no one appears to be looking at "those who also served". A brief history for me includes DDT mosquito fogging (with diesel fuel vapor carrier-agent), fresh water supply obtained from aircraft runway runoff (yes, this was the fresh drinking water supply - all else was brackish well water), living in the downwind fallout area from nuclear weapons testing, etc. My sister died at 13 of Hodgkin's, brother is a survivor of non-Hodgkin's lymphoma at 18. There are many others among those military but also dependents who have much more egregious exposures. In my only "civilian housing assignment" the entire family lived in the dusty strawberry farmlands being sprayed and dusted with methyl bromide (now replaced with even worse fumigant/pesticides). Not surprisingly, there's not a real enthusiasm for lifting the lid off this. But in the catalogia of neuron killers, exposures have a claim to fame and could offer some hints on cures and prevention. If not, we need to learn how to grow replacement neurons using something more direct than exercise. And like Western Europe, we need to develop chemical-free growing methods. Soon! So in the research that continues onward, be sure to ask about these exposures and not only those to veterans. rant mode<off>
  7. 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.
  8. 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
  9. 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...
  10. 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?
  11. 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.
  12. 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?
  13. 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
  14. 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?
  15. 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.