- Producer10/07/2017When walkabouts go wrong: Part UnoPhew...that walkabout is gonna go right up there with my more 'DANGER : do not repeat' ones. 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...
- 06/06/2017When paradise is torment...lol!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...
- 14/05/2017Art helps release painful emotions even in people with Dementia !Creativity And Emotional Repression | Psychology of Beautywww.naturibeauty.com
- 05/05/2017This is the MAN who knows the status quo! Take a minute to listen of all Neurodegenerative disease. One day, it may save your life.Listen to the Manwww.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...
- 02/05/2017Ben is a remarkable man - watch this space!tmrwedition.com A Journey Round My...
- 20/04/2017Boy...he picked the WRONG month......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...
- 11/04/2017I'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!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:...
- 06/04/2017Apologies...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 :)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...
- 16/03/2017This splendid fella Ben, with his enthusiasm and ability to get to where other's can't give me HOPE for Parkinson's!Tomorrow Edition - Abouttmrwedition.com Parkinson's disease is the...
- 12/03/2017A Remarkable Power of Observation, Steadfastness & Empathywww.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...
- 03/03/2017I'm talking to a 23-year old just dx. One of dozens in the last few months. FINALLY, some serious interest!MEDIA RELEASE: Young Onset Parkinson’s gets its first debate in Parliamentwww.linkedin.com UK charity Spotlight YOPD, registered last year, is working with MP Nick Thomas-Symonds to highlight the challenges of those with Young...
- 25/02/2017This Neurosurgeon calls it right about DBS - something I've harped on about for years :) As for TMS, rTMS, tDCS, RF and MRgFUS (because it’s ablative), they are NO substitute!Deep Brain Stimulation is Not Experimentalwww.linkedin.com There is a commonly held misconception that Deep Brain Stimulation (DBS) is an experimental treatment for end-stage Parkinson's Disease,...
- 25/02/2017Ben Weinstock's book 'Preventing Parkinson's' is my go-to for all things PD. It's sits on my shelf in grabbing distance.Can weight loss help fight Parkinson’s Disease? The amazing case of John Baumannwww.linkedin.com In 2002, at age 41, John Baumann was diagnosed with Parkinson’s Disease. At the time, he was obese. Although he played recreational sports, his...
- 30/01/2017Dr. 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...
- Producer07/08/2016Another 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)...
Comments13/01/2017 #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!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!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!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!11/01/2017 #38 Deb 🐝 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/11/01/2017 #37 Lisa VanderburgOkay @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 🐝 Helfrich. This is a real promise - I applaud you!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...#3308/08/2016 #30 Gerald Hecht@Deb 🐝 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
- Producer11/01/2017Family and what they teach usMy dad has Parkinson's Disease. 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. As a contractor my dad was a power horse. His own boss...
Comments11/01/2017 #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!11/01/2017 #10 AnonymousIn 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 View moreIn 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. Close11/01/2017 #4 @Julio Angel 🐝Lopez LopezI'm doing it @Max🐝 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.
Thanks11/01/2017 #3 Lisa VanderburgWow...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🐝 J. Carter, for the love you have for your father.
- Producer10/01/2017Ode to January and another new year, dagnabit.It is January. This is the time when there is no yesterday, there is no tomorrow, there’s 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...
- 31/12/2016Hacia una muela inteligente para luchar contra el párkinsonesmateria.com Un sensor que detecta los síntomas del párkinson y un diente artificial capaz de liberar fármaco constituyen el "proyecto más prometedor" de la UE para mejorar la calidad de vida de los...
- 15/12/2016@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-0160New hope for Parkinson’s disease - VAIwww.vai.org For the estimated seven to 10 million people living with Parkinson’s disease, there’s new reason for...
- Producer22/04/2016How 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...
- Producer15/11/2016Love 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!...
Comments02/02/2017 #17 Lisa VanderburgI 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 🐝 Manjit for adding those links; especially that righteous video! I'm grateful!02/02/2017 #16 CityVP 🐝 ManjitIt 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
PLDM = http://www.mountain-sleep.com/index.php/sleep-disorders/plmd-rls
So the gravity of the words "Still, my beloved – 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-UgY016/11/2016 #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:-)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!!'15/11/2016 #8 Lisa Vanderburg#5 You called it dead to rights, @Deb 🐝 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!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.15/11/2016 #6 Cyndi wilkins"But I’ll tell you what’s exhausting: anticipation. To have to be on full-alert for when he’s going to ‘go’ (potential fall), to know when he’s 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.15/11/2016 #5 Deb 🐝 HelfrichFrom 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!15/11/2016 #3 Lisa Vanderburg#1 Oh, I am touched by your words and your wisdom my friend, @Ali 🐝 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!15/11/2016 #1 Ali 🐝 Anani, Brand Ambassador @beBeeI 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’t always. If it appears I’m describing a stranger; we’re 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.
- 07/11/2016Video 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 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...
- 10/11/2016Day 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 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...
Comments10/11/2016 #1 Charles David UpchurchOutstanding 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.
- Producer08/10/2016Yup. 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...
- 21/09/2016I 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
https://www.amazon.ca/Out-Thinking-Parkinsons-Starting-Gary-Sharpe-ebook/dp/B01FJXOZUS/ref=sr_1_1?ie=UTF8&qid=1474473619&sr=8-1&keywords=out-thinking+parkinsonsWhat 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...
Comments30/12/2016 #14 Dorothy AnnyMy 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)com23/09/2016 #13 Gerald Hecht#11 @Deb 🐝 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 progress23/09/2016 #10 Gerald Hecht#9 @Deb 🐝 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 🎸 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!22/09/2016 #7 Deb 🐝 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.