As an antidote to the many insufferable and impenetrable posts that are offered here that alert us to scientific experiments that will probably end up nowhere (‘Scientists in Brazil show that PX2791 protein causes Parkinson’s symptoms in sloths’ type of thing 😂), I thought I’d offer one written in plain English and offer some practical hope. Having taken up wood work following my being inspired by the awesome Chris Lacey (an Australian who seemingly recovered in 2015 via neuroplasticity), I thought I’d write to him and see how he’s doing as we’d stopped corresponding a couple of years ago. I wondered if his new neural pathways had been sabotaged by the disease returning that once plagued his life. I pasted a section of his response below. All I can say is lucky bastard!
‘For me personally, I remain totally free of PD. I have no doubt whatsoever that I have fully recovered and that I am not going back there. In mid July it will be seven years since my recovery. For the sceptics you come across you can let them know that two years after my recovery my Neurologist put his agreement that I had recovered in writing. I live a totally normal life. I am not driven at all by the thought of having to drive myself to keep this way. I am a normal 74 year old and make no concessions to my PD past.
I am pleased to hear that you are getting into some scroll sawing. Make sure that you stick to it. It is easy to get discouraged and throw it in. My ability to put myself through thousands of hours of intense concentrated effort was one of the keys, I have no doubt. Don’t worry about your brain “getting used to the new activities”. If you are doing something that is less than easy and requires ongoing concentrated effort, it will remain beneficial for your brain. I urge you to stick with it my friend.’
Onward and upwards then 🤔😂
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jeeves19
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Inspiring. The key must be finding what I want to learn - really really want to learn. Otherwise it would come under the category of driving myself... Thinking 🤔
It’s got to be something that requires immense concentration and you have to do this every day for ideally several hours. I have to admit that I’m unsure whether I’m capable. He used to scroll saw 6 hours a day, 6 days a week.
A task that requires concentration and involves motor skills that have become impaired.
"He started making chess sets with an intense use of mindfulness to overcome the fine motor skill deficits in his fingers."
“Everything I do I do in a mindful way — ...it’s any physical activity in which you’re conscious mind is completely involved.”
Using mindfulness to do up his buttons and clean his teeth Chris says he produced a fundamental change in his brain and Parkinsons specialist Dr Frank Nicklason agrees.
“Chris’s reduction of symptoms through the use of mindfulness is compelling, remarkable and authentic.”
Neuro- plasticity! - He forced his brain to relearn capabilities it had lost. I do this myself although not nearly as well as he does - every day I relearn how to walk.
Amazing. I saw some of his chess sets scroll work. Im a crafter. I did miniature fairy worlds inside tins of sardines,☺️ inside bubbles like terrariums etc. I even got a scroll saw that i wanted to try but then i got sick and got focused in learning all i could of this illness. But i can well imagine that mindful focus on art and craft might re connect new paths in the brain...will surely go back to it as soon as some work is finished in my crafting space...use of breath, lots of breath, observing...can be fun. Great to be here surrounded by very knowledgeable adventurous beautiful parkys! Bless yoou guys!!!
I'll keep plugging away at the piano as well as the guitar then
As a small note of caution, also with other posts in mind, PD is a snowflake disease and different for all of us. It is also notoriously hard to diagnose, and has a very high acknowledged rate of incorrect diagnosis by neurologists
We're all different - the key is finding what works for us. And recognising that won't always be what works for others.
Thanks. I remember the story. It is inspirational. And a great outcome for him. At the bottom it mentions he will be appearing with John Pepper, who is a stand-out example of mis-diagnosis, and, if his somewhat vague and changing account is correct, changing diagnoses.
That isn't to say that I am sure he didn't have PD. I so not know the basis of his original diagnosis - although his condition sounds like it, from the little I have seen
It doesn't appear to be a recovery strategy that many (any?) have been able to copy - and whilst I'm pleased for Chris personally - I particularly like things with universal application - or at least that can help a decent size bunch of people.
I may have the wrong end of the stick, but I do find that doing focussed difficult tasks, such as learning new guitar arrangements, appears to help my overall wellbeing - it rolls back the PD a bit. The exception to that being to try to repair my Elite Nano helicopter - which drives me nuts cos its so bloody fiddly
The linked study is of people with Parkinson's who had initially been misdiagnosed as having something else. This does not speak to the Parkinson's being misdiagnosed. Also involved are frequent fruitless visits to a general practitioner. I had that experience -general practitioners not knowing what to make my of one-sided resting tremor:
"In a poll of people with Parkinson disease (PD), more than 1 in 4 (26%) participants reported having been misdiagnosed, with a further 21% having to see their general provider 3 times before being referred to a specialist"
Coincidentally it was playing the guitar where PD first manifested itself with erratic strumming and i was a musician for my living....still practice everyday although the fingers do not always do what i tell them so frustrating being slowly stripped of a lifetime skill
I like you. But im inclined to be truthful about my views on these things. Theres a number of conditions that are resolvable that mimic PD and result in frequent mis dx. Not millions of occurrences a year but probably thousands. I think that scenario is considerably more likely than him repairing a decade of neurodegeneration (and clearing the associated LBs) by woodworking.
Fair enough buddy, but wait until you see him walking. You won’t doubt it. I binned this film but have asked him to send again. Be patient with this. But you must understand that he achieved this over a couple of years of extremely intense focus. Almost obsessive. He’s a very exceptional man and as I said, I’m not sure that I have the ability to stay such a course. ☹️
Going on the theory that PD is the final common pathway for a multitude of pathologies I take this as a hopeful message which could work for some. Hope those Sloths are OK. 😉
At first I was depressed at the concept of multiple pathologies leading to common symptoms (if your pathology was still actively attacking neurons you are in a worse place then somebody who had a neuron attack and now just needed a way to recover from it), but then I thought: This just makes it a two pronged approach. We need to address the pathology (somehow) and work on neuroplasticity. I was pulling for the sloths too.
This is a novel explanation. Is it your hypothesis or from somewhere else?
…..if your pathology was still actively attacking neurons you are in a worse place then somebody who had a neuron attack and now just needed a way to recover from it,
As far as i am aware there is not an isolated neuron attack but just differing rates of progression. That can be viewed as pessimistic but I hold out hope of a disease or progression modifying therapy.
I am just spitballing based on my reading and High School education.
They say PD is a cascade of events like Rube Goldberg Machine. Maybe. Maybe sometimes it is latent viruses reactivating. Maybe PD is an autoimmune disease and if hit plateaus and then takes drops when there is reactivation. Or maybe not.
In the Chris Lacey case, if he has/had PD then it does not seem to be reactivating, so maybe his was one time damage and then repair?
I would like to think in terms of: Stop the pathology, stop the cascade, repair the damage (not necessarily in that order, hopefully all at once).
Anyway, the straight answer: My own hypothesis. I have a HS degree.
It may be nothing but when i got sick in dec 2019 i was in tons of pain. Had two frozen shoulders that barely swing, was dragging my foot, my depression and my anxiety were hitting the roof. I wasn't dx till 2021 because of the pandemic. The first neuro that saw me in 2019 sent me home to put my(trembling at rest with serious dystonia foot)"firm on the floor and go home". He dismissed all my questions and said it was anxiety. I knew it had to be something. I eat healthy, i exercised though not intensly, and stress was big time part of my life. My mum had had Pd. I got to research everything i could online. In 2021 i got a spanish neuro to dx me online. It was pandèmia time. No one would see me, but i had chosen well. He put me in a 50/ 50 regime of madopar and mucuna. He insisted that i keep walking, had fun, laugh alot and enjoy as much as possible. Read books, looked at hd thiamine, participated on the forums. I choose and picked what resonated with my life. I picked John Pepper mindful walk, read dr Okun, Asklog, Alex Kerten and dance and some feldenkrais movement, Bowen therapy as recommended by dr Coleman, medical chi kung from Dermot O Cnnor who cured his MS...I worked on my wounded emotions too...Finally in 2022 had a Dat scan that confirmed PD. By then big part of my symptoms had reduced. I still use medication and mucuna. I still have symptoms but you should see me dancing to flamenco, indian drums, african...with some added boxing added to the mix..😜i seriously flow. I also use John Pepper method of mindful walk with added drums for clue rythm. I believe his Pd was real like mine is but determination and doing what needs to be done contributed to neuroplasticity and keeps him well. He knows if he stops symptoms return. So do i. So he keeps going and i keep doing...I dont know if ill ever reverse it but if possible Goddess willing i will not be back to the pain and agony of 2019. I will let my body and soul and people who have made it before me, to teach me a symptom at the time, what i need to be well. I choose to trust. OMG, i never had written such a long post about my story. Thanks for being there, guys. Chelo
You describe some clear PD symptoms where as all John Pepper says is he had trouble throwing a ball! Since when was that a symptom! (I know he outlines a whole lot of depression type symptoms.)
And now JP has a new name for his therapy “mindful walking” he will adopt that no doubt. Hekate there is so much that is wrong with JP’s story, but like many before you I guess it gives you some hope so I shouldn’t try to tear it down. I do wonder why it takes 6weeks for his symptoms to reappear when he stops walking. I would have thought hours or days but not weeks. By the way when he says he stopped all pd meds he was only on selegiline an antidepressant med.
Yes and he says his tremor is both sides and an action tremor. I have a resting tremor as do all tremor dominant PwP. But you believe his analysis of his condition as you wish.
If your tremor is not resting tremor and you haven't been diagnosed with PD I doubt you have it. plenty of info on line but read research not opinions.
Thank you Hikoi! That is the nicest thing anybody has said to me in a long time. My sore shoulder and involuntary twitches are SLOWLY improving and that tremor holding a plate is gone. Thanks.
ncbi.nlm.nih.gov/pmc/articles/PMC4821931/ This is one study on the relationship between action and resting tremors in parkinson's disease. Of interest to me because of my husband's action tremor. And yes he does have resting tremor, bradykinesia , face mask etc etc . As someone remarked it's a snowflake disease .
Its an intermitttent action tremor. There's no reason it couldnt occur in PD (like pretty much anything else) but it isnt a cardinal PD symptom.
Far more compelling is that he has no bradykinesia. Or at least, he doesnt mention it in his book. Bradykinesia is the cardinal symptom of PD. It is supposed to be required for a PD dx to even be considered.
Now, i know from personal experience that bradykinesia may not be the first symptom to appear, and im sure some neuros are willing to dx PD in its absence (perhaps aided by some modern dx tests, tests that JP hasnt had) but if it hasnt shown up after 20 years then its pretty obvious what is going on. Or, perhaps more accurately, what isnt going on.
Reminds me of my first neurologists appointment. Which I asked for because I'd lost my sense of smell and the ent guy said there was no physical reason for it.The neuro told me not to worry. My sense of smell would come back. But I had Parkinson’s disease. Basis of diagnosis was "cog-wheel" motion in my wrists, worse left side, and parkinson's mask which I disputed. He made me walk across the room. No swing in my left arm.
He said "you've probably noticed that you have become slow at tasks like tieing laces or buttoning clothes". When I denied this he said my wife would have noticed. When I denied this he replied that we soon would.
My loss of smell was similarly discarded. I was sent for an MRI to look for a tumour. It still astonishes me that an ENT consultant isn’t aware of PD and olfactory retardation.
No. Sadly not. Yet. It's a bit odd because I sometimes can smell things faintly, but not properly or consistently
I got my neuro to look it up and he was astonished that smell is a symptom. It's a francophone thing. No mention of smell on french language sites. Quite a few things are different between the Anglo saxon and the French worlds
However he was right about the slow movement which progressively manifested
Such an inspiring post, Adam! It’s good to hear from you again! I firmly believe in neuro-plasticity, and every day, I challenge myself to keep myself mentally sharp, by reading and studying and doing mind exercises. Concerning overcoming some of the motor symptoms, I am always trying to find ways to accomplish tasks, that are difficult for me now, but before PD, were so easy to do, like screwing in objects to a wall, walking with a more normal like gait, doing yard work that requires bending and lifting, etc. I am at the point where all of my systems are affected by PD symptoms, so, everyday is a challenge. Muscle spasm pains, in my legs, feet, back and sides can be very painful, so I use stretching exercises, and other exercises designed specifically for Parkinson’s patients. Walking the dog can be challenging at times, for me, too! I have had blurriness, and see double with my vision at times, because of PD. This can be quite disconcerting. My autonomic system has been affected, where I get cold, when everybody else would feel warmth. Sometimes I feel extremely hot, when others feel cold. My whole digestive system has slowed down. I am on a Mediterranean diet! So, yes, I sure can relate to your frustrations about having PD. Trying to retrain our minds, and promote neuro-plasticity, is a good thing! Hope you are enjoying the Queen’s Jubilee celebrations, and wish you a happy summer! We may have PD, but we must not let it rule our lives! I will continue to pursue news about neuro-plasticity, and do what I can do to help myself, in the everyday battle, of dealing with PD! As my Doc tells me every time I see him, KEEP MOVING! Doug
Sorry to hear you’re struggling Doug. Chris is something of an outlier sadly. I have tried to do carving for many hours daily but things tend to get in the way like walking the dog, visiting my mum, keeping the garden tidy etc. I think as well that when you don’t see any obvious improvements after a couple of months you tend to wonder if it’s working and whether it’s worth pursuing? Chris has freely admitted that despite his guidance and encouragement to many, many PWP, as far as he knows, none have been able to replicate his achievement. But as I said it took him a couple of years working all day, 6 days a week. That’s going some eh? 😅
Thanks Jeeves. Inspiring. I am aware of being mindful in my moments of rash and unfocusedness is when 'it all goes wrong' and my brain closes for a split second.
I also recommend changing things
I am intergrating into french life n language, i have a swimming pool to attend too a logburner and wood to chop. I hv learnt some crochet and hv taken up pottery.
Educating n feeding my brain with new stuff
Onwards n upwards
Off for a week retreat of yoga and hiking tomorrow. 🤪
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so frustrating being slowly stripped of a lifetime skill 
Is it just me?
The brain that heals itself
WoooooooooHoooooo
A new May-December relationship with Parkinson´s - Should I deal with him as with someone with no disease NO CONTACT or not?
European Parkinsons Therapy Centre ,Boario Terme Italy
