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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
Buzzes
  1. Louise Smith

    Louise Smith

    12/08/2017
    People with high mental stimulation had 46 % less risk of dementia
    Louise Smith
    Mental Exercise Nearly Halves Risk of Dementia
    www.livescience.com Staying mentally and physically active is the best way to keep the mind sharp and reduce the risks of developing dementia, two recent studies...
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  2. Lisa Vanderburg

    Lisa Vanderburg

    24/07/2017
    Lisa Vanderburg
    The Sound of Silence ~ with an exciting pd breakthrough mixed into it
    smallgirlwithparkinsons.com By Meg Bernard ~ small girl with parkinson鈥檚 I live in a noisy world and I love it. I grew up in a household where there were six kids with ages spanning the small gap of only 7 years. There...
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  3. ProducerLisa Vanderburg

    Lisa Vanderburg

    10/07/2017
    When walkabouts go wrong: Part Uno
    When walkabouts go wrong: Part UnoPhew...that walkabout is gonna go right up there with my more 'DANGER : do not repeat' ones.聽A couple that we know (not well...acquainted; old friends of a sibling that none of us had seen for 9+ years) asked us if we'd like to swap abodes for a...
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    Comments

    Ali 馃悵 Anani, Brand Ambassador @beBee
    11/07/2017 #10 Ali 馃悵 Anani, Brand Ambassador @beBee
    #7 My intuition is narrow as compared of your ny friend @Lisa Vanderburg.
    Lisa Vanderburg
    11/07/2017 #9 Lisa Vanderburg
    #5 Warning: spoiler alert! Kidding my friend @Deb馃悵 Lange, Brand Ambassador @beBee...back home now.
    Lisa Vanderburg
    11/07/2017 #8 Lisa Vanderburg
    #4 Much appreciated @debasish majumder...I have much catching up to do!
    Lisa Vanderburg
    11/07/2017 #7 Lisa Vanderburg
    #3 That's it right there! - the depth of intuition you have my friend Ali 馃悵 Anani, Brand Ambassador @beBee. Truly awesome how you can identify with such precision the exact thread that needs most repair in the web I weave, brilliant man! Yes, I sorely needed it...but did I get it? Ah ha :)
    Lisa Vanderburg
    11/07/2017 #6 Lisa Vanderburg
    #1 THANK YOU @Deb 馃悵 Helfrich....just reminded me I hadn't removed it (for reasons YOU know)!
    Deb馃悵 Lange, Brand Ambassador @beBee
    11/07/2017 #5 Deb馃悵 Lange, Brand Ambassador @beBee
    Are you there now lisa?
    Ali 馃悵 Anani, Brand Ambassador @beBee
    11/07/2017 #3 Ali 馃悵 Anani, Brand Ambassador @beBee
    @Lisa Vanderburg- great buzz and you took me into different paths of thinking. I shall focus on one here. You wrote "It would also be a great break for me; time to get on with some arty stuff I hadn't got 'round to. To me, the best bit would be the quiet we knew she lived in Southern Spain, away from the maddening crowd so to speak...what's to decide"?
    You remind me of the Walden Effect. It is about living away in isolation in nature and coming up of observations and ideas that nobody has thought of before. We need isolation because apparently we make better use of our senses as you did.
    Lisa Vanderburg
    10/07/2017 #2 Lisa Vanderburg
    haha...@Deb 馃悵 Helfrich! It's gonna get more gruesome.......... :) Thanks sweetheart!
    Deb 馃悵 Helfrich
    10/07/2017 #1 Deb 馃悵 Helfrich
    I actually believe I was so overwhelmed with the tale on LI, I was rendered speechless. You are definitely an endurance athlete in this thing we call life!
  4. Lisa Vanderburg

    Lisa Vanderburg

    06/06/2017
    When paradise is torment...lol!
    Lisa Vanderburg
    We are mere mortals...que hora del morir?
    www.linkedin.com Fools: apply here! People don't get it. Since the loss of all our worldly goods because of bankruptcy due to BOTH breadwinners illness back in...
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  5. Louise Smith

    Louise Smith

    14/05/2017
    Art helps release painful emotions even in people with Dementia !
    Louise Smith
    Creativity And Emotional Repression | Psychology of Beauty
    www.naturibeauty.com
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  6. Lisa Vanderburg

    Lisa Vanderburg

    05/05/2017
    This is the MAN who knows the status quo! Take a minute to listen of all Neurodegenerative disease. One day, it may save your life.
    Lisa Vanderburg
    Listen to the Man
    www.linkedin.com Anyone who works in the medical field; specifically in the brain-business, will know of Neuroscientist Dr. Babak Kateb, Founding Chairman and CEO...
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  7. Lisa Vanderburg

    Lisa Vanderburg

    02/05/2017
    Ben is a remarkable man - watch this space!
    tmrwedition.com A Journey Round My...
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  8. Lisa Vanderburg

    Lisa Vanderburg

    20/04/2017
    Boy...he picked the WRONG month......
    Lisa Vanderburg
    Really?....still...now.....??
    www.linkedin.com Rant time :) I was reading a comment to a wonderful article by Benjamin Stecher, who is the next M J Fox (as far as I'm concerned). In 'The Future...
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  9. Lisa Vanderburg

    Lisa Vanderburg

    11/04/2017
    I'm exhausted and I don't even HAVE Parkinson's! Today marks James Parkinson's anniverary...little to show for it, so I'm gonna dig him up and ASK!
    Lisa Vanderburg
    A Question of Semantics?
    www.linkedin.com This'll be my last post of the season - promise! In the world of Parkinson's we have a problem: how to explain to the public that this:...
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  10. Lisa Vanderburg

    Lisa Vanderburg

    06/04/2017
    Apologies...my IT slave has rather oddly taken a nose-dive out the window!
    200 years since British Surgeon/Doctor/Apothecary describes what Parkinson's is. Some progress, in you count in beans :)
    Lisa Vanderburg
    Don't just sit there for Parkinson's; # it!
    www.linkedin.com It's a ticking clock - about waiting 200 years - waiting - there's always a cure in 10 years time - we are still waiting... M J Fox started his...
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  11. Lisa Vanderburg

    Lisa Vanderburg

    16/03/2017
    This splendid fella Ben, with his enthusiasm and ability to get to where other's can't give me HOPE for Parkinson's!
    Lisa Vanderburg
    Tomorrow Edition - About
    tmrwedition.com Parkinson's disease is the...
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  12. Lisa Vanderburg

    Lisa Vanderburg

    12/03/2017
    Lisa Vanderburg
    A Remarkable Power of Observation, Steadfastness & Empathy
    www.linkedin.com James Parkinson(1755-1824) probably has a beautiful tree growing over him. That's what I'd like to think anyway; his gravestone was lost sometime...
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  13. Lisa Vanderburg

    Lisa Vanderburg

    03/03/2017
    I'm talking to a 23-year old just dx. One of dozens in the last few months. FINALLY, some serious interest!
    Lisa Vanderburg
    MEDIA RELEASE: Young Onset Parkinson鈥檚 gets its first debate in Parliament
    www.linkedin.com UK charity Spotlight YOPD, registered last year, is working with MP Nick Thomas-Symonds to highlight the challenges of those with Young...
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    Comments

    Lisa Vanderburg
    13/03/2017 #4 Lisa Vanderburg
    #1 Thanks @Lisa 馃悵 Gallagher! Now Parkinson's is afflicting our bright young people, My hope lies in their ability to spread the word to the public; by them to the politicians.
    Gotta strike while the iron's hot!
    Lisa Vanderburg
    13/03/2017 #3 Lisa Vanderburg
    #2 It is indeed a double-edged sword @Gary Sharpe; one that I've harped about before. But maybe the right combo will come along to get us over the political gate. That has to start with public perception - our sword!
    Gary Sharpe
    11/03/2017 #2 Gary Sharpe
    #1 I don't hold out too much hope: policitics and healthcare in the UK are both in crises, and the combination has become toxic!!!
    Lisa 馃悵 Gallagher
    07/03/2017 #1 Lisa 馃悵 Gallagher
    This is good news, the debate. I hope they focus more on young people being afflicted with this disease. @Gary Sharpe had younger onset too and has been doing studies for some time now.
  14. Lisa Vanderburg

    Lisa Vanderburg

    25/02/2017
    This Neurosurgeon calls it right about DBS - something I've harped on about for years :) As for TMS, rTMS, tDCS, RF and MRgFUS (because it鈥檚 ablative), they are NO substitute!
    Lisa Vanderburg
    Deep Brain Stimulation is Not Experimental
    www.linkedin.com There is a commonly held misconception that Deep Brain Stimulation (DBS) is an experimental treatment for end-stage Parkinson's Disease,...
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  15. Lisa Vanderburg

    Lisa Vanderburg

    25/02/2017
    Ben Weinstock's book 'Preventing Parkinson's' is my go-to for all things PD. It's sits on my shelf in grabbing distance.
    Lisa Vanderburg
    Can weight loss help fight Parkinson鈥檚 Disease? The amazing case of John Baumann
    www.linkedin.com In 2002, at age 41, John Baumann was diagnosed with Parkinson鈥檚 Disease. At the time, he was obese. Although he played recreational sports, his...
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  16. Lisa Vanderburg

    Lisa Vanderburg

    30/01/2017
    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...
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  17. ProducerGerald Hecht

    Gerald Hecht

    07/08/2016
    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)...
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    Comments

    Gerald Hecht
    08/02/2017 #49 Gerald Hecht
    #48 @debasish majumder Thank You For Reviewing It!
    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
  18. ProducerDavid Navarro L贸pez
    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...
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    Comments

    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!
    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
    Ian Weinberg
    11/01/2017 #5 Ian Weinberg
    Good stuff @Max馃悵 J. Carter Savor the moments, support purposeful business
    @Julio Angel 馃悵Lopez Lopez
    11/01/2017 #4 @Julio Angel 馃悵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.
    Thanks
    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.
  19. ProducerLisa Vanderburg

    Lisa Vanderburg

    10/01/2017
    Ode to January renewed in July, dammit!
    Ode to January renewed in July, dammit!It's one I wrote in January, so hell with it...we know the news:byebye baby, baby goodbyeee------------------------------------------------------------It is January. This is the time when there is no yesterday, there is no tomorrow, there鈥檚 only...
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  20. Josefina Ruiz

    Josefina Ruiz

    31/12/2016
    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...
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  21. 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.

    http://www.msdrx.com/pipeline/msdc-0160
    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...
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  22. ProducerGary Sharpe

    Gary Sharpe

    22/04/2016
    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...
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  23. ProducerLisa Vanderburg

    Lisa Vanderburg

    15/11/2016
    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!...
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    Comments

    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 馃悵 Grandy
    02/02/2017 #15 Donald 馃悵 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 馃悵 Anani, Brand Ambassador @beBee! 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 馃悵 Anani, Brand Ambassador @beBee
    15/11/2016 #1 Ali 馃悵 Anani, Brand Ambassador @beBee
    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.
  24. Gary Sharpe

    Gary Sharpe

    07/11/2016
    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...
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  25. Gary Sharpe

    Gary Sharpe

    10/11/2016
    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...
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    Comments

    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!
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