No, this isn’t a recommendation to British PWP to listen to this very good podcast which I’m sure they’re all aware of. It’s more a question which I think somebody should ask (and presumably the man’s neurologist tunes in and isn’t responding which I find odd). One of the group always complains that Levadopa does nothing for him and has been pointing it out since the podcast began a couple of years ago. Parkies who have a few years under their belt understand that this has implications and I’m just puzzled why nobody suggests to him that he probably hasn’t got Parkinson’s?
Movers and Shakers podcast : No, this isn’t... - Cure Parkinson's
Movers and Shakers podcast
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jeeves19
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The thing that strikes me about the podcast is the passivity of the group. Something of a British trait. "The doc says this and that's the end of it. Let's get down the pub."
None show much interest in exploring the territory beyond that map provided by their neuro and gp.
The problem with that map is that it's tailored to populations and not individuals; is often out of date; is constricted by bureaucratic (NICE) guidelines; is geographically insular; is less a representation of all the science, more a representation of that science that has piqued financial interests.
This is why I don't listen to it. It's not remotely empowering.
Trixiedee! How are you? Long time no hear!
I'm OK, I spend more time on Facebook as it's more private. How are you?
So so. I’m generally quite happy with my life but own up to being a bit underwhelmed by DBS which delivered to a point but wasn’t really life changing.
Couldn't agree more, I constantly analyse and research everything.DAT scan would give an 80% confirmation of Parkinson's.
It's taken me a year to get the MD Doctor to stop prescribing Rasagiline for my who is being treated for parkinsons.
The MD who prescribed it without a 1:1
prescribed 1mg, I read that it should be 0.5mg then if, no effect, increase to 1mg max.
Rasagiline in itself, as does levodopa causes dyskinesia.
Perhaps he’s been asked to “ take the tablets with food”? And doesn’t realize!
Perhaps because the implications of having PSP / MSA are much worse? i.e. no meds help
Or just ignorance - they're not exactly a cutting edge bunch; I think we forget how unusually well informed we are on this forum. Mainstream Britain is very much 'do what the doctor says and look no further than that'.
Don’t tar ALL Britains with the same brush. I have done thousands of hours of research in the last 5 years and found success with b1 therapy and others additions. I now tell my gp and neurologist what I want to try next. We PWP know more than most doctors and nurses about our daily challenges
I did say "mainstream", not "all"! 
People doing their own research and thinking beyond what their doctor tells them are sadly not the norm, and IMO that's reflected in the podcast. Would that everyone was as empowered as you describe; that's fantastic.
I find the MD , listenens but doesn't take in what I observe and research ( 24/7) about my Wife who is being treated for parkinsons.
But thousands listen to it. Does no clinician think to point him in a different direction?
I wonder if clinicians listen to it? Bit of a busman's holiday, listening to that in your spare time!
Good for knowing your audience though and listening to what makes them tick etc eh?
A few days ago, I read that someone saw their Parkinson’s nurse and she had never heard of mucuna?! Makes you wonder
My P nurse had never heard of Mucuna and never had a patient in her 15 years that had internal tremors like mine. She said I was wrong in how I described them and it must be RLS. I haven’t been back to her!
🫤😱 That is shocking.... Glad you didn't go back. Reminds me what an Osteo said to my husband with PD 10 years ago. That his excruciating nerve pain in his back (which had him screaming with pain) was not fixable and he would have to live with the pain and oh btw - you're F#$#king unlucky aren't you to have this pain and Parkinsons.. (he laughed)... I was gobsmacked. We actually laid a complaint with the Health Board (different country than UK) about him. Fact is getting the right person for you is key. My husband had surgery on his back 10 years ago now and is cured of the 'operable' back pain which was a cyst on a disc.
You tell ‘em Bunny 😉😊😘
I do - you know me 🤣🤣🤣All about looking out for your own health, along with listening to your Dr, Neuro, but it has to be in conjunction these days IMHO...😆
How is the DBS working for you?
Hasn’t really changed my world like I thought it might Marc. It’s rid me of the debilitating dystonia which had got to astonishing levels but my bradykinesia for some parts of the day is still evident as are off times. I can turn over in bed, get out of the bath unaided and get out of bed independently. So some pluses but as for these guys who show themselves on YouTube almost as a ‘new man’:that ain’t happening mate.
Well, it seems to have provided some relief and that beats a stick in the eye. Might it continue to improve?
Per the opening post - you don't respond to Levodopa either, do you?
No, I don't.
Do not forget that after about 5 years or so of honeymoon c/l works less and less well.
Or no honeymoon .....
I have mixed feelings about movers and shakers. On the one hand it's good to raise awareness at the very least, on the other it's a very privileged subset of British society and it's very limited on actual helpful information. I'm not sure who their target audience is? It does seem popular though.
Which one of them? I never noticed bùt then I stòpped listening after half a dozen.
Maybe you should message theìr mailbag ? You might become famous for rediagnosing oñe of the privileged few.
JP?
It might be essential tremor, not Parkinson at all. We had an elderly man who found out four years later that this was the case, in a group I frequented. He took levodopa all those years, to no avail.
Whether comments above are right or wrong about attitudes to medical care and lack of enquiry over this side of the pond, I have spoken to many for whom the podcast has been a revelation.I have an elderly neighbour just diagnosed with PD who who doesn't have the computer skills to do the research many of us do, and I am grateful for the podcast as I can point him to it and it will be extremely informative for someone like this starting from scratch. He wasn't told to separate food and c/l for example, as happens for many. People have to start somewhere.
Regarding privileged status. Yes, undoubtedly. But it is that status, broadcasting experience (and contacts) which has allowed them to get the podcast off the ground and internationally known so fast.
They are very up front about it.
What they say is news to many and they are doing a grand job treading a fine line between pushing the boundaries with the information they disseminate and the criticisms of the health system they levy, and staying mainstream enough to get top NHS neurologists as guests.
We on this forum may be highly informed, but the podcast does lot of good on other groups of PD sufferers who may not even be aware they need to get more information than the doctor presents. It's not just a British trait there must be subsets of every population who are brought up to believe doc knows best/all.
Finally, they aren't passive, many find them very funny. 😊
But yes it does remind me how lucky we are here on this forum and I tell everyone I meet that this is the place to be ☺️
I agree the podcast is listened to by many people some who know us, and it’s highlighted some of their knowledge about the condition that they would otherwise be ignorant about. They have a bit more understanding with what PD sufferers go through on a daily basis.
I have signed up for Rory Cellan Jones blog, which isn’t just about PD but he is an investigative journalist who although in a privileged position, fighting for improvements to PD sufferers with research and bringing it into the public eye. it’s definitely raised the profile of PD in the U.K. I wrote about this the other day.
healthunlocked.com/cure-par....
I agree. I think it's because many of them are such well known TV/radio personalities that people listen who otherwise might not.I recommended it to my 87 year old mother, who could then learn about my situation by listening to familiar personalities whom she has seen or listened to for years. It made it easier for both of us. She understands the parameters of my abilities and energy and has realistic expectations and I feel she knows what's going on for me - without us having to waste the time we have together talking about it!
I think also that the fact that some are so well known makes it more powerful when they discuss the nitty gritty, such as constipation, attacking their partner in their sleep, becoming dependent etc.
Awareness raising for sure.
Definitely, my husband’s close friend has a realisation of some of those aspects when they meet up in the pub. He certainly understands more about the condition than he did before as you say without having to keep discussing it.
Anyone looked into the association of Helicobacter pylori and its effect on the efficacy of absorption.It's been publicised by NIH.
Eradicating HP from patients with Parkinson's disease by applying antibiotic treatment will increase the absorption of levodopa and decrease their motor fluctuations.
I've just listened to a few of these again. I'll take a stab - wild guess - at what's going on.
Everything Jeremy says about the value of the medication is probably coloured by his exasperation that no PD meds are disease-modifying and that there has been - essentially - very little pharma progress in decades. Characteristically, he's on a constant downer about that.
Much more speculatively: It's also not of out of the Q that he doesn't experience obvious ON/ OFF episodes. I haven't heard him touch on that.
My mum doesn't. Nothing transformative happens - has ever happened - when she takes her levodopa. However, there is a slow deterioration across the day if she is not given any at all.
In the absence of disastrous OFF periods and miraculous ON periods, a chap on a 4-a-day levodopa schedule could well draw the conclusion that his meds aren't doing much.
Possible that Jeremy - and my mum - retain a capacity to produce dopamine in reasonable amounts. How? Decent sleep. Possibly.
My mum sleeps pretty well and, perhaps uniquely among the group, Jeremy does too.
morning- have you been in touch with J Paxton or the podcast to suggest this?
No Annie. I wouldn’t know how to and don’t really think it’s my place to do this. It just strikes me as odd that nobody close to him has said ‘hang on a minute, let’s review this’?
Does seem strange!
But you don't entertain the idea that maybe Chris Lacey might not have/have had PD? Seems incongruent to me.
feedback@moversandshakerspodcast.com
I sent them an email and got a personised reply, including, perhaps in error, the personal email address and mobile number of one of the hosts.
You could contact them 😊
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