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fire1fl

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fire1fl last won the day on March 28

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About fire1fl

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  • Gender
    Male
  • Location
    North of Disney in UF Health Country
  • Interests
    PD Cure. Reading. Outdoor sports when the weather suits.

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  1. fire1fl

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

    Suggested this earlier. Any result? https://www.remfresh.com/remfresh-continous-release-melatonin
  2. fire1fl

    iPS in Japan

    https://www.japantimes.co.jp/news/2018/07/30/national/science-health/japan-oks-clinical-trial-ips-cells-parkinsons-treatment/#.W2IsJuSWyUk Dr., it appears that Japan, starting with a small sample, it ready to make the jump to treating PD patients with stem cells.. Do you have any insight as to whether the success with monkeys will produce similar results in humans? If this trial proves successful in a year, how long do you think the USA will take to corroborate and duplicate the research? Will this be a last resort for advanced disease at first until more success is proven? Caution is important but so is hope!
  3. fire1fl

    Tremor when nervous?

    My MDC recommended I start Sinemet almost right away at diagnosis. Balancing the dose against metabolic rate and symptoms is an interesting mind game. But yes, under stress my right arm/hand escape passivity. Likewise when I'm fatigued from exercise (the important part of PD management). I adjust dose on the fly and go on, even though it takes about an hour for full effect.
  4. fire1fl

    muscle spasms

    If physical therapy can't offer relief my suggested next line of remediation is acupuncture. Every practitioner has preferred method/school (my own interventionist uses "Five Element" but cautions about many inexperienced and not fully schooled). He is 20-year pharmacist and thus knows the practice from multiple angles. The really good ones are identified word-of-mouth and that creates the conundrum of too busy for new patients. Find referrals from a knowledgeable friends/patients. Since your injury/nerve damage is acute you may get earlier examination and remedy. BTW, in my state this treatment is covered by health insurance.
  5. fire1fl

    Peeved PreClinical Parkinson's Person

    Your described symptoms seem classic for Parkinson's. You message does not say where you are located but here's a link to the identified places you should get help. https://www.ninds.nih.gov/Current-Research/Focus-Research/Focus-Parkinsons-Disease/Udall-Centers
  6. fire1fl

    Is DBS being oversold?

    In my first exposure to DBS as a "potential future", I was not pressured in any way . In fact, hanging my hat (figuratively) on DBS was discouraged because of my age, response (+++) to drugs, and active lifestyle. My MDS spent time explaining the multi-dimensional team that would do the evaluation and judge my eligibility for DBS. There were many walls to climb over before being selected. Now, as I read the this thread about promoting DBS, I mentally substitute Sinemet or other PD drugs wherever I see "DBS" and observe the same critiques could be applied. Like it or not, we are in a profit-driven medical system. Motives will always be suspect, but my care team has never given me one iota of suspicion. I have not even thought about DBS as a personal decision - if it is presented to me (unlikely) I will decide with complete consultation with my team of experts.
  7. 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.
  8. fire1fl

    insomnia

    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.
  9. fire1fl

    Father with PD coping with alcohol

    Oh, and Wait, Wait! I just saw this below your post and it looks worthwhile investigating!
  10. 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.
  11. 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.
  12. fire1fl

    Music and Parkinson's Disease

    https://youtu.be/_D-LmRNdQiQ
  13. 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.
  14. 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.
  15. 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.
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