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fire1fl last won the day on March 28

fire1fl had the most liked content!

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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. fire1fl

    Shot in the dark

    In addition to all the good advice you're getting here consider this: 1. When you "drop cigarettes" don't pick them back up. Research nicotine and PD and you'll find there is some active research into whether nicotine has a role in alleviating PD symptoms. If you need to continue to self-medicate, use a less destructive route of administration (gum, lozenge, patch). 2. Caffeine has also been shown in some research to correlate with improved symptoms and/or enhanced medication effects. The only non-medical activity that seems to matter is exercise - which you can and should do (Rock Steady boxing, mountain cycling, running, swimming etc.). No matter whether you're diagnosed or not, this will be the start of your future (protection against all manner of illness). Also you might want to go online to find Federal government PD researchers recruiting volunteers (https://www.ninds.nih.gov/current-research/focus-research/focus-parkinsons-disease ) (likewise the Michael J. Fox Foundation). It is possible to get your diagnosis refined by one of the medical centers conducting research.
  2. fire1fl


    A member of my household with chronic insomnia was cured by using "REMFresh" - a timed release version of melatonin. It was recommended by a physician sleep specialist who said it's a last resort before sleep aid CNS drugs.
  3. fire1fl

    Father with PD coping with alcohol

    Oh, and Wait, Wait! I just saw this below your post and it looks worthwhile investigating!
  4. fire1fl

    Father with PD coping with alcohol

    I hesitate to give advice bc I am not a professional and know so little about this series of unfortunate events. But I wouldn't want to leave you with nothing. Perhaps some research on loneliness would help. "Loneliness: Human Nature and the Need for Social Connection" Aug 10, 2009 by John T. Cacioppo and William Patrick and, "Leaving Loneliness: A Workbook: Building Relationships with Yourself and Others" January 15, 2014 As my own in-house professional says, your Dad is the identified patient, but you and your mom (and others) are patients too, also in need of psychological help. If he won't let you help him, help yourself in such a way that he is not excluded but can rejoin. The alcohol needs replacement with something else - a circle of friends, a volunteer job, travel with his true companion. But he will do none of these until its his own idea and not perceived as an external control. 'Nuf said; hope your wedding is a combination of happy event where dad has an important role requiring sobriety.
  5. fire1fl

    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.
  6. fire1fl

    Music and Parkinson's Disease

  7. fire1fl

    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.
  8. fire1fl

    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.
  9. fire1fl

    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.
  10. fire1fl

    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>
  11. fire1fl


    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.
  12. 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
  13. fire1fl

    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...
  14. 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?
  15. fire1fl

    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.