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Parkinsons Disease - beBee

Parkinsons Disease

~ 100 buzzes
A hive to share information, research and questions about Parkinson's Disease, managed by outthinkingparkinsons.com
  1. Lisa Vanderburg

    Lisa Vanderburg

    Dr. Maria De Leon is not only a gifted Neurologist, but a Parkinson's sufferer too. Her insights are brilliant and she never shies away from the truth!
    defeatparkinsons.com "Science may have found a cure for most evils; but it has found no remedy for the worst of them all- the apathy of human beings." Helen Keller It has been a few weeks since I have written. Why? Pure apathy or is it indifference! In our vocabulary we...
  2. ProducerGerald Hecht

    Gerald Hecht

    Another Type of Paradigm Shift
    Another Type of Paradigm ShiftTraditionally, students have been introduced to the study of Pharmacology by dividing the subject into two broad subfields; 1) Pharmacokinetics: The study of the administration, absorption, metabolism and elimination of drugs from the body, and 2)...


    Gerald Hecht
    14/01/2017 #47 Gerald Hecht
    #45 @Lisa Vanderburg "Its the bomb!"...sayeth Ganglion!
    Lisa Vanderburg
    13/01/2017 #46 Lisa Vanderburg
    #38 Thanks @Deb 馃悵 Helfrich....my brain doesn't get out much with hubby 18 years in! Great link!
    Lisa Vanderburg
    13/01/2017 #45 Lisa Vanderburg
    #44 @Gerald Hecht Had to laugh at your description of your brain cell ganglion, I expect her illusions of grandeur are based on her being legion and not single at all, or having a a name like Gang Lion! I did find her - tripped over her actually, and busted a toe. Mine's called 'Granule'. She's probably been eaten by the cat.
    I've just been studying the links. I remember etanercept and now understand the perispinal injection administration procedure/effect, which I had trouble visualizing without a...er...map? I get it now; the Trendelenburg maneuver and why it would work. Thanks for the tutoring, dude!
    Gerald Hecht
    12/01/2017 #44 Gerald Hecht
    #43 @Lisa Vanderburg If you find my brain cell along the way...that would be so awesome; she calls herself "ganglion"...I learned the hard way to just let her have her way with that one and to ignore the "delusion of grandeur aspect"...oh, and yes; the amazing thing is that the ventricular lining and the parenchyma do communicate... at the very least with regard to pro inflammatory cytokines -- (TNF-a stops "acting all crazy and shuts up") and noradrenergic auto receptors alpha 2 also are reached...and sure enough --this procedure is also working just as dramatically with all of the chronic neuropathic pain syndromes that it's been tested on, and rapid reversal of major depression that is even more dramatic than the ketamine infusion procedure!
    Lisa Vanderburg
    12/01/2017 #43 Lisa Vanderburg
    #40 Ah-ha...I did wonder if intranasal was too 'simple'. Thanks for clearing that up and all the links @Gerald Hecht, and for explaining the Perispinal entry - I get it now....brilliant! I'll be back once I've found my rogue brain cell to work on the links. Thanks so much!
    Gerald Hecht
    12/01/2017 #40 Gerald Hecht
    #37 @Lisa Vanderburg intranasal doesn't work; causes severe sinusitis...which could progress to necrosis.
    The mechanism that is allowing Perispinal Administration to work is 1) the particle size of etanercept itself, which allows it to enter the CSF in surrounding the spinal cord WITHOUT having to perform an actual lumbar puncture (Perispinal Administration is actually non-invasive 2) Trendelenburg maneuver gets it into the ventricular system., and 3 ) it doesn't actually cross the BBB (doesn't have to)...it signals neurons and glial cells "on the other side"...fast!
    Lisa Vanderburg
    11/01/2017 #39 Lisa Vanderburg
    #38 just quickly, my friend @Deb 馃悵 Helfrich, I shall read this in the morn, once I've fed & bedded the big guy! I possibly have confused the CNS with CSF, but it is another entryway? I must think. Thanks for the info!
    Deb 馃悵 Helfrich
    11/01/2017 #38 Deb 馃悵 Helfrich
    #37 You will find this new route fascinating, @Lisa Vanderburg. Right now they are excluding PD, but ultimately, this method of taking a different route seems very, very promising for directly medicating the CNS without using the highly unreliable digestive tract method... here is the site of the clinic practicing this method... http://www.strokebreakthrough.com/
    Lisa Vanderburg
    11/01/2017 #37 Lisa Vanderburg
    Okay @Gerald Hecht...you know I'm a slooooooow learner. This is absolutely fascinating (I think)! Just to get it right without pictures, do you mean an interface [of sorts] between para-vascular spaces in the human cerebral cortex - that is your way in? How is that considered non-invasive; not an accusation but you are sweet enough to understand my academic prowess. From that most impenetrable of crossings (unless you're a virus), the BBB with its 400 miles of blood vessels is a bit of a bastard to overcome, no doubt. What about intranasal induction like Prof. Frey....does it stand a chance?
    Sorry...lots of q's, like @Deb 馃悵 Helfrich. This is a real promise - I applaud you!
    Gerald Hecht
    09/08/2016 #36 Gerald Hecht
    @Joanna Hofman Let us hope that we can see this thing throug to its full potential; we all have been touched either directly or in the suffering of a loved one; and it needn't continue; the only obstacles are corporate greed, politics, etc. This is to important --as we all know...#33
    Gerald Hecht
    09/08/2016 #35 Gerald Hecht
    @Graham馃悵 Edwards Thank you for your kind words; they mean a lot coming from you. I hope that forces of darkness do not become obstacles toward seeing this come to fruition! #32
    Gerald Hecht
    09/08/2016 #34 Gerald Hecht
    @Mamen 馃悵 Delgado a Thank you so much for your kind thoughts!#31
    Graham馃悵 Edwards
    08/08/2016 #32 Graham馃悵 Edwards
    You feed the little "science guy" in me... thank you @Gerald Hecht
    Mamen 馃悵 Delgado
    08/08/2016 #31 Mamen 馃悵 Delgado
    #28 You are welcome my dear @Gerald Hecht, your post left me speechless... Kudos to you!!! ;)
    Gerald Hecht
    08/08/2016 #30 Gerald Hecht
    @Deb 馃悵 Helfrich There are clues as to potential escapes...biochemically, there is the fact that dopamine itself (ironically, and "teasingly" in the context of the Perispinal administration route) IS a neurotransmitter, which, in the periphery, CANNOT CROSS THE BLOOD-BRAIN-BARRIER...most of the "discussion" regarding this consists of avoiding the full discussion and starting another --on the role of peripheral dopamine as a QUITE SPECIFIC regulator of Renal Blood Pressure...whereas the functionality equivalent catecholamines elsewhere in the peripheral circulatory system are epinephrine (adrenaline) and norepinephrine (noradrenaline). To me, although this is so vague and intuition based as to barely qualify as a hunch...perhaps; there is some sort of (stem cell commonality?) between cells comprising portions of the kidney, and dopaminergic producing neurons in at least one of the 4 dopaminergic circuits in the CNS. We know that the dopamine in the periphery cannot enter the brain. We know that both the brain and periphery contain dopamine. To me that is "strange" --it "feels" like the disconnect there shouldn't just be left "dangling" --dismissed with a shrug (as tonsils and the appendix once were). This could be worth further exploration (in fact, it now seems to have captured my attention). #24
    Gerald Hecht
    08/08/2016 #29 Gerald Hecht
  3. ProducerMax馃悵 J. Carter
    Family and what they teach us
    Family and what they teach usMy dad has Parkinson's Disease.聽My dad's legs don't work so well and he is supposed to use a walker, he doesn't and at times it feels as though the roles have reversed. I get why though.聽As a contractor my dad was a power horse. His own boss...


    Max馃悵 J. Carter
    11/01/2017 #15 Max馃悵 J. Carter
    #13 I rarely blush.... well done @Lisa Vanderburg.

    You are too kind.

    It is unfortunate that it is more machismo that is taught than true manhood in schools. One of my ongoing efforts is in teaching men to be more manly and that means more in touch with being able to express themselves with love without fear of being thought of as a homosexual and before anyone says something there is nothing wrong with being homosexual.

    What's wrong is thinking only homosexual men can be emotional creatures who are capable of tender caring and compassion and experiencing what I call androgynous love.

    The male friends I have in my life often get big hugs and hear I love you frequently.
    Lisa Vanderburg
    11/01/2017 #13 Lisa Vanderburg
    #6 Aw..God love ya! (I'm old, you can overlook this once), what a heart you have! I so long for your love, bonding and - yes - manhood! It should be taught at school to be in another's shoes :)
    Just an aside for levity; my father's last word to me before he died (I was the carer that night) was, 'oh....SHUT UP woman'. Your Dad is a great guy and well worth your respect; just don't burn out!
    Max馃悵 J. Carter
    11/01/2017 #12 Max馃悵 J. Carter
    #10 @David Navarro L贸pez it appears to me you honor him daily in the way you live.

    I love the tile concept you shared with us and thank you for doing so.

    It reminds o the old line "The older I got, the smarter my father got."

    I agree I think our dads would have been great friends and I appreciate the friendship that you and I have been building slowly over time.
    David Navarro L贸pez
    11/01/2017 #11 Anonymous
    Sorry, I mean "My Father passed away on 2008 and there is no single day without my mind flying to him."
    David Navarro L贸pez
    11/01/2017 #10 Anonymous
    In Spain we use to make tiles with sayings or adages on it and hang them in the wall like this https://3.bp.blogspot.com/-MSbo-Mp78GA/Vy-PV9PFdlI/AAAAAAAAUBo/VNsdi7Z3EoE0FsV-2oYuackN6vsKY4mqwCLcB/s1600/azulejos%2Bcon%2Brefranes.jpg
    I remember a very good one, which I am translating for you:
    At 5 years old, Papa knows everything
    At 15, there are things Papa doesn't know
    At 25, Papa knows nothing
    At 35, maybe Papa was right in something
    At 45, I am going to ask Papa
    At 55, I wish I had my Papa
    My Father passed away on 2008 and there is no single day my mind flies to him.
    I was lucky to have him, learned a lot from him. He never was too tired to teach me something. Whenever something had to be done at home, fixing a door, painting, whatever, he always took me with him and made me help him, explaining me why and how he was doing it, letting me do it, even if wrong, to learn.
    In many ways, when you described yours, it made me think of mine. I am sure they would have been good friends.
    I believe we both have been fortunate with our respective fathers.
    I saw him going down in his health, day by day. However, he never left his spirit going down.
    I hope I will honour him. Close
    Max馃悵 J. Carter
    11/01/2017 #9 Max馃悵 J. Carter
    Yo @David B. Grinberg thank you for sharing this.
    Max馃悵 J. Carter
    11/01/2017 #8 Max馃悵 J. Carter
    #5 Thank you @Ian Weinberg wise words of advice.
    Max馃悵 J. Carter
    11/01/2017 #6 Max馃悵 J. Carter
    #3 It felt like a living eulogy as I was writing it. Kind of preparing myself in away for the inevitable.

    I found with my dad that there was this unspoken competition for alpha dominance so to speak that went on for too many years. It has done both of us a world of good to set that aside and work it out. I think a lot of fathers and sons go through it and I see it in mothers and daughters at times

    I remember the old movie THE BREAKFAST CLUB and that I am calling it an old movie is making me feel old ;)

    When a teen girl is asked why she wants to run away she says "My home life is unsatisfying."

    The response summed up was so is everyone else's or we would live with our parents for ever. I only hope to not have the same rfit with my own son and work at it with him. He's 12.

    Thank you @Lisa Vanderburg for your kind words, they are felt and appreciated.
    Ian Weinberg
    11/01/2017 #5 Ian Weinberg
    Good stuff @Max馃悵 J. Carter Savor the moments, support purposeful business
    Julio Angel Lopez Lopez
    11/01/2017 #4 Julio Angel Lopez Lopez
    I'm doing it @Max馃悵 J. Carter
    He is 90 on the 17th of this month.
    I have the impression that his gaze is lost in memories and I hear his stories repeated over and over again, giving him a face of surprise and laughter as if he told me for the first time.
    I own him.
    Lisa Vanderburg
    11/01/2017 #3 Lisa Vanderburg
    Wow...that hit home, Max. What you have so beautifully written is a living eulogy, although I can understand if you don't see it as such!
    I feel your steps, moments of watching, waiting and breath-holding regarding your father's Parkinson's - my husband is 18 years into his and is moving to a wheelchair (temporarily, of course!). You are a good son and a practised listened; your father has taught you so many great life-lessons, and I find it so freeing to hear you talk of this - even though it costs you plenty! My husband started aged 49, so our sons were early teens. They never talk about it (at least to me). I wish they did.
    Thanks @Max馃悵 J. Carter, for the love you have for your father.
    David Navarro L贸pez
    11/01/2017 #2 Anonymous
    #1 dear max, i found your post very interesting and want to add acomment later, when i have the time for it. Such a post worths taking the time to.
    Max馃悵 J. Carter
    11/01/2017 #1 Max馃悵 J. Carter
    Thank you @David Navarro L贸pez for sharing this.
  4. ProducerLisa Vanderburg

    Lisa Vanderburg

    Ode to January and another new year, dagnabit.
    Ode to January and another new year, dagnabit.It is January. This is the time when there is no yesterday, there is no tomorrow, there鈥檚 only the now. It carries the awful threat of staying that way; I empathise with our ancestors who waited in the dark with fearful longing to see if the sun...
  5. Josefina Ruiz

    Josefina Ruiz

    Josefina Ruiz
    Hacia una muela inteligente para luchar contra el p谩rkinson
    esmateria.com Un sensor que detecta los s铆ntomas del p谩rkinson y un diente artificial capaz de liberar f谩rmaco constituyen el "proyecto m谩s prometedor" de la UE para mejorar la calidad de vida de los...
  6. Deb 馃悵 Helfrich
    @Gerald Hecht - I would really appreciate it if you could offer some of your professional insights on this development and the new drug MSDC-0160, and perhaps help me translate what the drug does into some nutritional interventions for @Gary Sharpe to consider.

    Deb 馃悵 Helfrich
    New hope for Parkinson鈥檚 disease - VAI
    www.vai.org For the estimated seven to 10 million people living with Parkinson鈥檚 disease, there鈥檚 new reason for...
  7. Max馃悵 J. Carter
    CANNABIS STOPS Parkinson's Disease Symptoms
    CANNABIS STOPS Parkinson's Disease Symptoms CANNABIS is a MIRACLE PLANT from Mother Nature !! Watch Medical Marijuana's effect on Parkinson's, Part 3 of 3. Aided by a fellow Parkinson's patient and...


    Deb 馃悵 Helfrich
    10/12/2016 #1 Deb 馃悵 Helfrich
    This video shows dyskinesia calming down in under 5 minutes after sub-lingual (under the tongue usage).
  8. Max馃悵 J. Carter
    Man With Parkinson's Disease Demonstrates The Relief He Gets From Medical Marijuana!
    Man With Parkinson's Disease Demonstrates The Relief He Gets From Medical Marijuana! Man With Parkinson's Disease, Can we get 1000 likes? Here's a link to my smoking videos https://www.youtube.com/watch?v=6FuadaVXjc8...


    Deb 馃悵 Helfrich
    10/12/2016 #1 Deb 馃悵 Helfrich
    This is the video to watch for the tremor effects.
  9. ProducerGary Sharpe

    Gary Sharpe

    How To Get Moving Again with Parkinson's Disease
    How To Get Moving Again with Parkinson's DiseaseAt the core of the concepts behind Out-Thinking Parkinson's is the understanding that the pathways to movement in the brain are manyfold and hence that, with the aid of the right diet and supplements together with the optimal environment and...
  10. ProducerLisa Vanderburg

    Lisa Vanderburg

    Love hurts
    Love hurtsIt's Care-giver month again....think I'll have a nap. Don't get me wrong - for other carers, I care. I'm sure they do a stellar job and remain blissful, serene and contented. Well done!Alas, I'm the other type: bemused, confused and cranky with it!...


    Lisa Vanderburg
    02/02/2017 #17 Lisa Vanderburg
    I am humbled at your considered understanding and empathy, Sir! You've clearly identified this 'dance' we're in - a little like the film 'They shoot horses, don't they'; we're both fairly knackered and probably should be melted down for soap:) I spent a few years writing about the med side of PD, but it sort of seems a little like I've run out of words for the time being. For my hubby who puts up with my endless crap, we have a lot of laughs based on the British-way-of-caustic-wit: sarcasm. That gets us through!
    Thank you kindly @CityVP 馃悵 Manjit for adding those links; especially that righteous video! I'm grateful!
    CityVP 馃悵 Manjit
    02/02/2017 #16 CityVP 馃悵 Manjit
    It altered my view of love when I first visited England and saw my aunt as a carer and all that she had to do to look after my uncle whose Parkinson's steadily got worse. Over successive years I learned how unforgiving Parkinson's is. It was made even more tough because my uncle was a naturally a fiercely independent man, who found it difficult to be subjected to loss of control.

    I tried looking after him for just one day - one day when I discovered to experience life living in my aunt shoes and by the days end I was exhausted, and it was beyond me how she did this day in day out - how can observing this not alter my view of what love is.

    The luxury I had is that I was there on a business trip and I got to get back home. Through this buzz I am learning for the first time highly detailed interventions. I checked out DBS, RBD and PLDM

    DBS = http://www.parkinson.org/understanding-parkinsons/treatment/surgery-treatment-options/Deep-Brain-Stimulation
    RBD= http://www.neurologyadvisor.com/neurodegenerative-diseases/rem-sleep-behavior-disorder-parkinsons-disease-neurodegenerative/article/435337/
    PLDM = http://www.mountain-sleep.com/index.php/sleep-disorders/plmd-rls

    So the gravity of the words "Still, my beloved 鈥 the one I choose to love daily" is that much more powerful to absorb.
    The carer is not spared but can fight back in small ways and it is a privelege to have read this buzz, for the creativity and spirit, as also shown in this video "Parkinsons is a Thief" https://www.youtube.com/watch?v=InFY3s-UgY0
    Donald Grandy
    02/02/2017 #15 Donald Grandy
    Agree @Deb 馃悵 Helfrich. As difficult as it might be. Live your life or become the next one requiring care. It's not a selfish thing to do.
    Cyndi wilkins
    16/11/2016 #14 Cyndi wilkins
    #7 The wave hit hard...an ocean of emotion...I'm still picking the seaweed out of my hair...But I'm getting there;-) Yeah, that whole sickness and in health thing isn't all it's cracked up to be...Don't get me wrong...I love, honor and respect the kind of love that it takes to be a care giver...But sometimes it hurts like hell...experiences like this will awaken that sleeping dragon in anyone...I suppose if it were easy, there would be no lesson in it...We are all our own greatest teachers...sending you LOVE:-)
    Lisa Vanderburg
    16/11/2016 #11 Lisa Vanderburg
    #10 I hear you, @Irene Hackett! It seems wimmin are bent to this role; God love the male care-givers, but they are a rarer breed....must be the anticipation thing; we corral wobbling toddlers and crashing kids, so it's just an ergonomic problem :) Just for laughs: my father died in 2010 - I had been assisting my step-mother in his care. It was my night - his last. He was his usual cranky self (not in pain, mercifully) and was struggling to get out one side of the bed which was blocked, while I tried to steer him to the other side. He got so mad he had his final event. His last words were, 'oh SHUT UP woman!!'
    Deb 馃悵 Helfrich
    15/11/2016 #9 Deb 馃悵 Helfrich
    #8 As complex as it might be, he actually needs you to make sure you keep on living a full life - whatever that means to you!
    Lisa Vanderburg
    15/11/2016 #8 Lisa Vanderburg
    #5 You called it dead to rights, @Deb 馃悵 Helfrich! It crept up slowly - all this....mayhem. I think I have come to terms with my 'lot'. I have no illusions as to what the future holds, so I set my eyes on the goal: to be in control when the proverbial really hits the fan! After that, I imagine no more - it's not of consequence. That's not a sentimental statement or plan, it's merely the truth! To think my sister (years back) used to believe in reincarnation - ha! I'd say to her, 'who in their right mind would want to come back to this world of pain??' But I could think of less-lived lives!
    Lisa Vanderburg
    15/11/2016 #7 Lisa Vanderburg
    #6 Good Lord @Cyndi Wilkins - I am so very sorry for your angst. I can totally empathise when you say, ''The only saving grace for me is that he also suffers dementia and has no memory of what has happened to him...'' You HAD to put him in a nursing home: you had no choice, and I hope you're not still beating yourself up for that. I have the dubious benefit of having to care for my spouse until 'death do us part'. That gives me the onus to be both pit-bull and dragon for him (the upside :) ), and I apologise in advance for those that will feel my wrath should they ignore or neglect my charge! The lines are just too bleary when it's your parent - it warms my heart though; you're clearly mutual love.
    Cyndi wilkins
    15/11/2016 #6 Cyndi wilkins
    "But I鈥檒l tell you what鈥檚 exhausting: anticipation. To have to be on full-alert for when he鈥檚 going to 鈥榞o鈥 (potential fall), to know when he鈥檚 going to crash into something or other requires a fair amount of following like a guard-dog." Oh dear Lisa....I feel this soooooo profoundly right now...I've been living this nightmare of dragons and demons ever since I found my dad one morning several weeks ago like a turtle on his back in the bath tub...He had a stroke as he was making his way to the bathroom in the night and fallen over...I thank God every day that he was still conscious and not severely injured, however the stroke took it toll...After several weeks of trying desperately to care for him at home I have had to make the heart wrenching decision to put him in a nursing home...The emotional backlash is like being dragged into an undertow and not being able to surface for air...The only saving grace for me is that he also suffers dementia and has no memory of what has happened to him...My heart goes out to you.
    Deb 馃悵 Helfrich
    15/11/2016 #5 Deb 馃悵 Helfrich
    From my humble perspective, embodying the dragon, for your own good, is the most sane approach. Get thee to someone who can begin to comprehend. It is isolating trying to explain something that is inexplicable.

    And self-care! I see the challenge so clearly. The need for vigilance. But that very vigilance is actually probably part of what created the situation to begin with. It will be reflected back on you at the most poignant of moments. After caring for weeks non-stop, the slightest diversion of focus will result in some sort of catastrophe either physical, or much, much worse, the allegation that insinuates that you have been selfish.

    In a very tiny, miniscule way, I can identify the cycle with my puppy days. It wasn't the damage to the objects being chewed so much as the inability to see chewing and swallowing as harmful that ravages the companion's mind, which is walking its own tightrope of sleep depravation. Wondering if there are any puppy-proofing sorts of options in your vastly more complex scenario?

    Caring about you from afar!
    Lisa Vanderburg
    15/11/2016 #4 Lisa Vanderburg
    #2 Thank you so much @Gert Scholtz! To be honest I don't know if I'm courageous, but I know a fella who has Parkinsons AND a dragon for a wife - he's got STONES :)
    Most grateful for your good wishes - I'll pass them on!
    Lisa Vanderburg
    15/11/2016 #3 Lisa Vanderburg
    #1 Oh, I am touched by your words and your wisdom my friend, @Ali Anani! I am so far from a super-anything, I look at amoebas in awe :)
    Life is one long prat-fall; a losing battle with decrepitude. It's the same for everyone - those with chronic disease (especially neurodegenerative) just KNOW they're losing earlier. Borrowing from your pensive and beautiful buzz, Adaptations to Emotional Flooding, I just have a little root-rot!
    Gert Scholtz
    15/11/2016 #2 Gert Scholtz
    @Lisa Vanderburg My best wishes to you and your husband Lisa. Your courage is truly admirable.
    Ali Anani
    15/11/2016 #1 Ali Anani
    I am deeply touched by your buzz @Lisa Vanderburg. Your story is full of anticipation and I understand fully your saying that anticipation makes us edgy. I almost "melted" like an ice cube while reading " I have strong opinions, but clearly more lily-livered about my own set of values, because the lines keep changing or blurring. They didn鈥檛 always. If it appears I鈥檓 describing a stranger; we鈥檙e getting closer"! This is a deep description of many of us and I am not sure I could ever expose my feelings so eloquently and creatively. I wonder how do you make the time to write and comment. You are a super human.
  11. Gary Sharpe

    Gary Sharpe

    Video record of first ever session with "Smovey Rings" part 2.
    Next I incorporated these into my dance therapy and walking exercise. I found they greatly assist, as I think the video clearly shows.
    Smovey Rings and Parkinson's Disease Part 2
    Smovey Rings and Parkinson's Disease Part 2 Video record of first ever session with "Smovey Rings" part 2. Next I incorporated these into my dance therapy and walking exercise. I found they greatly...
  12. Gary Sharpe

    Gary Sharpe

    Day 3 exercising with [and without] "Smovey" Rings and the day after receiving my second treatment of K.O.R.E therapy from Tessa Donovan. I doubt anyone who has not followed my Journey of Resurrection from 7 years of degeneration into Parkinson's Disease would have a clue about my diagnosis from watching this. Indeed, this is the first time even I cannot see any of the tell tale signs.

    I cried when I watched this back with my Mum.
    Day 3 with Smovey Rings and Parkinson's Disease
    Day 3 with Smovey Rings and Parkinson's Disease Day 3 exercising with [and without] "Smovey" Rings and the day after receiving my second treatment of K.O.R.E therapy from Tessa Donovan. I doubt anyone who...


    Charles David Upchurch
    10/11/2016 #1 Charles David Upchurch
    Outstanding progress, @Gary Sharpe !

    I try to keep my comments and my excitement in check as I have seen you break through (or work around) one challenge after another. Sometimes your leaps forward cause me to forget the big picture.

    I realize, as you do, that you can't expect every day to be a breakthrough, yet every day you keep hope alive that you will at least maintain most of your progress to date, and--when the time is right--make another step (or leap) forward.

    I celebrate your struggle as much as I do your progress. You have given us all a lesson in focus, a lesson in being open to possibilities, a lesson in letting go of anger and pain, and a lesson in courage, friend.

    Happy re-wiring!
  13. ProducerLisa Vanderburg

    Lisa Vanderburg

    Yup. It's all about him.....
    Yup. It's all about him.....https://www.linkedin.com/today/author/0_0-YtfauRWrgykW1NKuvu6Q?trk=prof-smAnd that's where you can find all my snarky posts about Parkinson's Disease. I'm stepping out (from LI) awhile to test the waters. All you really need to know about me is that...


    Sara Jacobovici
    01/01/2017 #3 Sara Jacobovici
    Just started to follow you @Lisa Vanderburg. A belated welcome to beBee. Now, in my opinion there's snarky and then there's snarky.....Looking forward to reading your posts.
    Lisa Vanderburg
    08/10/2016 #2 Lisa Vanderburg
    oops...think I made a mistake - what's that plus & minus button? I thought it was 'like' :) Gimme another 20 years and I'll have it sussed! Thanks for turning me onto this, Deb!
    Deb 馃悵 Helfrich
    08/10/2016 #1 Deb 馃悵 Helfrich
    Welcome to beBee, @Lisa Vanderburg. We are having a great time buzzing around over here.
  14. Paul "Pablo" Croubalian
    I don't know if Gary shared this here, but all I can say is WOW

    This is amazing! Gary is fighting and beating Parkinson's.
    Support his efforts here
    What You Won't See at the World Parkinson's Congress #wpc2016
    What You Won't See at the World Parkinson's Congress #wpc2016 Leadership on Parkinson's Disease isn't about talking about it, nor throwing good money after bad at it, nor giving us People with Parkinson's the false...


    Dorothy Anny
    30/12/2016 #14 Dorothy Anny
    My husband was misdiagnosed with PD in 2000. Very rapid deterioration and many queries eventually led to MSA (Multiple System Atrophy) diagnosis. A horrible, horrible condition robbing people of independence, dignity, movement, speech, continence, ability to swallow and breathe.we didn't know what to do we tried everything possible medically, we were waiting for his death then one day our daughter got back from work with the email of a herbal Dr saying her friend from work told her about a testimony on how Health Herbal Clinic cured her mom from PD and it truely worked, we were desperate and sceptical but my daughter told me we got nothing to loose and i decided to give it a try. 4 weeks after he started taking the herb he regained his speech and today my husband is fully rocovered from this deadly disease called PD, this isn't a BS it is real you can also contact Healtth herbal clinic on healthherbalclinic(AT)gmail(DOT)com or website on www(DOT)healthherbalclinic(DOT)weebly(DOT)com
    Gerald Hecht
    23/09/2016 #13 Gerald Hecht
    #11 @Deb 馃悵 Helfrich I don't know --regarding my related runners dystonia (much more limited in scope, I know) and in the continuing WAKE of the flood; I'm always spotting some new dust/dirt thingie which drives me crazy anyway like that last line of stuff that never makes into the dustpan...it quickly starts out as jazz bass and minimal drums with brushes...and really quickly becomes composition/choreography ; the first sweep is the hardest; but ihas a powerful draw if you are open to listening (it's not "medical medical")...but that's gonna happen when our little group finally shows 'em that emotional intelligence is a hindrance to medical progress
    Gerald Hecht
    23/09/2016 #12 Gerald Hecht
    #11 @Deb 馃悵 Helfrich the broom thingie (I mean old school floor sweeping broom) there's always something to sweep real quick inhale, sweep , exhale,...sweep sweep; that's not "medical medical". It's Fred Astaire coatrack medical/not medical fun
    Deb 馃悵 Helfrich
    23/09/2016 #11 Deb 馃悵 Helfrich
    #10 We all know it intuitively but any thoughts on how to make it clinically relevant? There are times when he cannot be prompted to take this medication as the freezing takes down the cognitive mind as well.
    Gerald Hecht
    23/09/2016 #10 Gerald Hecht
    #9 @Deb 馃悵 Helfrich indeed; that darned autonomic nervous system can lull us into forgetfulness: 1) heart and lungs: rhythm section 2) whistling and humming: melody, countermelody, harmony, all kinds of household instruments 馃幐 everywhere, glass vessels differently filled, brooms....3) polyrhythmic complexity with arms and legs... before you know it we're all "one person dancing bands"...we never stop composing either; it's a lifelong thang!
    Deb 馃悵 Helfrich
    23/09/2016 #9 Deb 馃悵 Helfrich
    @Gerald Hecht = music is pretty well known for generating emotion - but seems rather good at plain old motion too
    Jena Ball
    22/09/2016 #8 Jena Ball
    #7 Ooo let's keep in touch! Kids are great instigators in general. They bring out the child in others - however old their physical body is ;-)
    Deb 馃悵 Helfrich
    22/09/2016 #7 Deb 馃悵 Helfrich
    #4 @Jena Ball - we might have some thoughts on collaborating.... play is absolutely crucial in opening up our neuroplasticity and nobody is better at play than kids. One of the things @Gary Sharpe and I have in the hopper over the long term is a book about how kids/grandkids can help PwP's initiate movement with some mirroring - Simon says type games among other techniques.
    Gert Scholtz
    22/09/2016 #5 Gert Scholtz
    @Gary Sharpe Well done Gary! You are an inspiration. And quite a dancer too!
    Jena Ball
    22/09/2016 #4 Jena Ball
    I've been following how dance is being used to combat Parkinson's too. It's amazing how the brain will compensate given the chance. I am eager to read Gary's book and see what he has learned.
    Loribeth Pierson
    21/09/2016 #3 Loribeth Pierson
    Wow, that is a BIG change ! Keep up the great work... Sharing!
    Paul "Pablo" Croubalian
    21/09/2016 #2 Paul "Pablo" Croubalian
    Maybe we can get Lady Gaga on board. Gary seems to find her music perfect.
    Deb 馃悵 Helfrich
    21/09/2016 #1 Deb 馃悵 Helfrich
    Thank you so much, @Paul "Pablo" Croubalian! This shows a big change from only being able to lie on the couch - well if he managed to fall in the right way....
  15. Gary Sharpe

    Gary Sharpe

    Gary Sharpe
    Why There is More to Parkinson's than just Neuro-degeneration
    niume.com OK, World, here is your proof positive that Parkinson's is not just a "neurodegenerative condition" but that there is much more to it. The research results on walking with the disease which I present in this video I hope will be viewed as quite...


    Franci馃悵Eugenia Hoffman
    04/09/2016 #7 Franci馃悵Eugenia Hoffman
    Sincere, motivating and useful information. Thank you for bringing us along on your journey @Gary Sharpe.
    Lisa 馃悵 Gallagher
    02/09/2016 #5 Lisa 馃悵 Gallagher
    Wow very powerful. What a difference from January and seeing the video in the garden. I love the idea of the mosaic tiles, it seems they would/will be very helpful.
    Sara Jacobovici
    02/09/2016 #4 Sara Jacobovici
    @Gary Sharpe: "Humans can rewrite our own Stories."
    Sara Jacobovici
    02/09/2016 #3 Sara Jacobovici
    The reason I shared this in my Hive Metaphor is because @Gary Sharpe proves how his capacity to see beyond the literal can lead to transformations.
    Sara Jacobovici
    02/09/2016 #2 Sara Jacobovici
    @Gary Sharpe: "I share this for the same reason I share all my posts - to Inspire, Motivate and Demonstrate that there is always Hope and through Loving Kindness we Humans can rewrite our own Stories."
    Deb 馃悵 Helfrich
    01/09/2016 #1 Deb 馃悵 Helfrich
    These interlocking floor tiles are really great ideas for using vision to trigger movement in people with Parkinson's.
  16. Gary Sharpe

    Gary Sharpe

    Trailer for "Out-Thinking Parkinson's: The Journey", a Film by Gary Sharpe and Deb Helfrich
    Trailer for "Out-Thinking Parkinson's: The Journey", a Film by Gary Sharpe and Deb Helfrich http://www.outthinkingparkinsons.com/downloads/ "Out-Thinking Parkinson鈥檚: The Journey鈥 is a compelling, inspirational and educational film, not only about...


    Deb 馃悵 Helfrich
    26/08/2016 #9 Deb 馃悵 Helfrich
    #5 @Vincent Andrew - we are so grateful for your encouragement and willingness to share throughout your network!
    Deb 馃悵 Helfrich
    26/08/2016 #8 Deb 馃悵 Helfrich
    #3 We do so appreciate your constant support, @Sara Jacobovici thanks for sharing here and there.
    Deb 馃悵 Helfrich
    26/08/2016 #7 Deb 馃悵 Helfrich
    #2 Thanks, @Irene Hackett, we so appreciate your kind words.
    Deb 馃悵 Helfrich
    26/08/2016 #6 Deb 馃悵 Helfrich
    #1 Thanks for that pointer, @Dean Owen, I also agree that we need to shorten the trailer. We've got a lot of footage, input from others, including their own video experiments and some interesting hypotheses that will ultimtately. We'd love to get connected with anyone in the documentary business for some mentorship on next steps!
    Vincent Andrew
    26/08/2016 #5 Vincent Andrew
    This video is remarkable! Thanks for sharing your story @Gary Sharpe and @Deb 馃悵 Helfrich. Wishing you both success. I am sharing this on Twitter and Googles+.
    Sara Jacobovici
    26/08/2016 #4 Sara Jacobovici
    Compelling, Inspirational and Educational; these words begin to describe the film and the people who made it!! Bravo @Gary Sharpe and @Deb 馃悵 Helfrich wishing you both all the success!!
    Sara Jacobovici
    26/08/2016 #3 Sara Jacobovici
    Compelling, Inspirational and Educational; these words begin to describe the film and the people who made it!! Bravo @Gary Sharpe and @Deb 馃悵 Helfrich. wishing you both all the success!!
    Dean Owen
    26/08/2016 #1 Dean Owen
    A seriously important video that I hope goes viral. Nicely done Gary. I seriously hope that people will watch the whole video. Such is the weird society that we live in that many will turn off within the first minute. They need to see what happens at 1 min 14 secs, then they will want to watch the rest.
  17. ProducerDave Rynne

    Dave Rynne

    When someone you love has Parkinson's Disease
    When someone you love has Parkinson's DiseaseMy grandfather had Parkinson's Disease 聽for as long as I can remember. As I got older it got worse for him, I was still young and I remember laughing along with my cousins when he tried to sip his coffee. He always used a saucer and I can remember...


    Max馃悵 J. Carter
    23/06/2016 #11 Max馃悵 J. Carter
    #8 @Deb 馃悵 Helfrich and @Gerald Hecht I do something similar.
    Max馃悵 J. Carter
    23/06/2016 #10 Max馃悵 J. Carter
    Great piece. My dad has Pd and has seen Michael J. Fox as an inspiration that has kept him going.
    Gerald Hecht
    23/06/2016 #9 Gerald Hecht
    #8 @Deb 馃悵 Helfrich just like Todd Rundgren, actually, apparently just like me, I remembered what you remembered I was remembering
    Deb 馃悵 Helfrich
    23/06/2016 #8 Deb 馃悵 Helfrich
    #6 I am a synthesizer. I can't keep up with the pace of the internet, but once I have learned something, I can explain it and funnel it out to usable information.
    Gerald Hecht
    23/06/2016 #7 Gerald Hecht
    #5 @Gary Sharpe thank you and you're welcome , I gotta get out of this pressing yet useless meeting
    Gerald Hecht
    23/06/2016 #6 Gerald Hecht
    #4 @Deb 馃悵 Helfrich wow, I really am in a in haste situation ; how did you even do that?
    Gary Sharpe
    23/06/2016 #5 Gary Sharpe
    #4 and I am the living proof of what @Deb 馃悵 Helfrich just said. I still have bad days (having one today), but eating enough calories, keeping the blood sugar up and drinking plenty of water is so important when re-starting to move again. The problem with Parkinson's is the signals between body and brain get all messed up so we tend not to "get" that we need fuel or water or oxygen! Thanks @Gerald Hecht - back at you
    Deb 馃悵 Helfrich
    23/06/2016 #4 Deb 馃悵 Helfrich
    @Dave Rynne - what @Gerald Hecht is alluding to is some of his old research on exercise. It is absolutely, positively the case that despite all the signals from the brain to stop moving, that it is important to continually build in a routine of movement. There are a number of levels here. First of all, just succumbing causes degeneration in all the muscles, tendons, etc of the body to become rigid and weak, exacerbating the symptoms. Then there is the oxygenation that occurs when we focus on movement, which doesn't need to be anywhere near what we commonly consider 'exercise'. Finally, movement and keeping busy reduces stress at a biochemical level because stress uses dopamine.

    Movement is the Definition of Life and even though all the signals are asking him to stop moving, it is utterly important to continue moving through the stiffness, rigidity, tremors, and tics. This needs to be a conscious daily decision in the arsenal of living with PD and is something that it is crucial for the caregiver to be firmly dedicated to supporting. I would be honored to talk with your mom if she is interested.
    Gerald Hecht
    23/06/2016 #3 Gerald Hecht
    #2 @Gary Sharpe in haste, thank you for all you do!
    Gary Sharpe
    23/06/2016 #2 Gary Sharpe
    Thank you for helping raise awareness and this honest look at the impact of Parkinson's @Dave Rynne. Our resource which @Gerald Hecht mentioned is here www.outthinkingparkinsons.com - I also have created a Parkinson's Hive here on beBee and will share your post there.
    Gerald Hecht
    23/06/2016 #1 Gerald Hecht
    @Dave Rynne I have also found some EXCELLENT info from @Gary Sharpe and @Deb 馃悵 Helfrich my dopamine stuff is changing my way of thinking about this; but it's still germinating
  18. Donald Grandy

    Donald Grandy

    Cycling for Freezing Gait in Parkinson's Disease
    Cycling for Freezing Gait in Parkinson's Disease A 58-year-old man with a 10-year history of idiopathic Parkinson's disease presented with an incapacitating freezing of gait. However, the patient's ability...
  19. Gary Sharpe

    Gary Sharpe

    I was asked to share this info about a new development to help with tremors, and I am delighted to do so.
    Gary Sharpe
    Fawad Bhatti
    www.outthinkingparkinsons.com I hope you are doing well. I really appreciate the work you are doing for Parkinson's community. Sadly, my family had also been affected by Parkinson's disease, so I have been working on trying to make the lives of my family and millions of...
  20. Gary Sharpe

    Gary Sharpe

    Gary Sharpe
    Prelude to Parkinson's Disease
    www.linkedin.com Losing Myself: Gary鈥檚 Prelude Sometime in 2009 to July 2015 My name is Gary Sharpe. In 2009 (the exact date escapes me) I was diagnosed with Early Onset Parkinson鈥檚 Disease. This is the story of how...
  21. Gary Sharpe

    Gary Sharpe

    In this article I have collected together a number of resources and case studies which demonstrate unequivocally that inevitable decline is simply not true and that there is always the possibility of hope. These then are the stories of our fellow travelers who've already escaped from both Parkinsonism and the falsehoods of the medical diagnosis narratives, or are helping others to do so.
    Gary Sharpe


    Cyndi wilkins
    22/05/2016 #2 Cyndi wilkins
    An amazing collection of resources for anyone struggling with disease.
    Gary Sharpe
    21/05/2016 #1 Gary Sharpe
  22. Gary Sharpe

    Gary Sharpe

    www.outthinkingparkinsons.comGary Sharpe
  23. Gary Sharpe

    Gary Sharpe

    Learning to Walk Again with Parkinson's Disease and a Pair of Fitflops
    Learning to Walk Again with Parkinson's Disease and a Pair of Fitflops People with Parkinson's tend to shuffle when we "walk". We take very small steps, hardly lifting our feet off the floor at all. We often trip over things...
  24. Gary Sharpe

    Gary Sharpe

    Gary Sharpe
    The News of the Century About Parkinson's
    www.linkedin.com BIG NEWS! This has taken me 4 months of full time effort, knowledge assimilation, building the confidence of my own evidence. This is not something anyone can do overnight - the underlying injury...
  25. Gary Sharpe

    Gary Sharpe

    Gary Sharpe
See all