Like many an idea, good or bad, it was born in a pub. Over the last 18 months a group of us with Parkinson’s have been meeting in the Ladbroke Arms in London’s Notting Hill Gate and now we are launching a podcast. It is called Movers and Shakers and in those familiar words it is available wherever you get your podcasts.
You didn't say what the beer was like at the Ladbroke Arms! Anyway...
I was diagnosed with PD coming up to 2 years ago.
A question:
Have you or any of the group tried CBD products? I have heard that this has worked for some PD sufferers. Could this be a area for future discussion?
Also, one thing that affects my shakes is if I get excited!(Not too much excitement when I watch West Ham at the moment) However this can spoil the moment with the wife if my hand is flapping furiously during a moment of passion. (Another area for discussion?)
There are other things but I'm sure you will cover then during your fantastic podcast.
Fantastic Podcast! My dad has had PD for thirteen years and I’ve involved in the Irish Charity Move4Parkinson’s. Love to chat more, we facilitate research based classes dance classes, Choirs, Support Group etc … info@move4parkinsons.com
Hi my name is Tony, live in Bristol 76 years old. I have PD and hydrocephalus.
I am married to Paula, 19years younger than me, the loveliest person I have ever known.
We go to dance for Parkinson’s every Friday.
I talk to everyone about their problems and they all say how relaxed they are with me I help wherever i can, i set up restrung and cleaned a guitar for one of the lads he said it’s lovely to play now how much do i owe you, I said a cuppa and a hug
Makes me feel good, tell myself every day get on with it. Take care everyone
Thank you all for the useful and entertaining podcast.
My husband was diagnosed with Parkinsons 5 years ago and died 4 months ago. His main symptom was difficulty with speech and swallowing which rapidly deteriorated. His death was due to food entering his lungs and causing pneumonia. I think that speech, swallowing problems and all the embarrassment that accompanies this, is a fairly common problem and wonder if it may be a subject worth addressing, I’m afraid that, as his speech and swallowing deteriorated his world became much smaller, due mainly to embarrassment. My husband was a bright, intelligent retired mathematician. The assumption by medical staff, at all levels, was that as they found difficulty in understanding him he mustn’t be able to understand them. The frustration and upset this caused in his final 2 weeks in hospital was beyond measure. I have no doubt this is a problem shared by many in the Parkinson’s community.
So sorry that the live broadcast didn’t work out. I refuse to get excited about the tools for early diagnosis being explored. My husband is the sufferer and the thought of this black cloud hovering over him for any longer than necessary is not a happy one. Find a cure and then identify the sufferers early.
A quick question for Sir Nicholas. I'm a 45 year old solicitor and was diagnosed last year. I've begun to use Dragon voice recognition software as my typing is starting to suffer as a result of the Parkinson's. What microphone does he use with his PC?
My Wife was diagnosed with Parkinson’s disease when she was 52 years old 4 years ago. The levodopa did very little to help her. The medical team did even less. Her decline was rapid and devastating. It was muscle weakness at first, then her hands and tremors. Last year, a family friend told us about Natural Herbs Centre and their successful Parkinson’s Ayurveda TREATMENT, we visited their website www.naturalherbscentre. com and ordered their Parkinson’s Ayurveda protocol, i am happy to report the treatment effectively treated and reversed her Parkinson’s disease, most of her symptoms stopped, she is able to walk and her writing is becoming great, sleep well and exercise regularly., she is pretty active now
I was diagnosed with PD last August at 48yrs old. I emailed Gaynor in January and she called me on the same day. Hated the leaflets that were posted to me. The pictures of the person with Parkinsons and their carer did not represent me. Carer did but not the older person with Parkinsons. Such a relief to know that Spotlight is there for us.
I've been through every range of emotion possible. It's early days but I'm still able to work. I've been cabin crew for 29yrs. I'm working on a blog and hoping to do a skydive for charity. Onwards and upwards! Thanks for the podcast. Good to know you're not alone. Claire.
I confess that when a friend asked me whether I was going to be listening to Movers and Shakers, I said that I couldn't see the point of 'top people with Parkinson's.' That was unfair of me. I enjoyed the first two episodes. Your experiences echoed many of my own. I was diagnosed nearly 6 years ago. Life is (still) good.
I hope that at some point you will look at Parkinson UK's 'Get it on time' campaign. In 2005 my father, who had Parkinson's dementia, was admitted to hospital with nothing worse than constipation. Once there he was not given his Parkinson's drugs and he lapsed into a coma and died. His death certificate says he died of Parkinson's. It would be more correct to say that he died of the NHS. It is an absolute scandal that nearly 20 years later, people are still dying, or suffering unnecessarily because nursing staff do not understand the importance of making sure people with Parkinson's get their meds on time.
I am a former ballet dancer and Artistic Director of English National Ballet, recently diagnosed with “suspected” Parkinson’s Decease. I have been pleased to hear ENB's dance for Parkinson's spoken of on your podcast.
Here is another interesting case report from Aug21. Hope it helps.
Quote:
In this preliminary study of PD patients, a treatment with donor FMT infused via colonoscopy, was safe and resulted in improvement of PD motor and non-motor symptoms, including constipation, at 6 months. Further research is needed to assess longer-term maintenance of efficacy and safety, including in large scale randomized controlled trials, preferably in patients with moderate-severe PD.
Great podcast. Our pd group closed during Covid and never restarted. This has lifted both my husband - who has had PD for 12 years - and me. Well done.
Hi again. I'm not sure if this messaging service is the right forum for adding relevant clinal trials, so please accept my apologies in advance, if you prefer I get these to you some other way.
This particular trial, carried out in Texas, appears to highlight subjective improvement in these patients.
Parkinsonism is a complex syndrome, involving subjective symptoms such as fatigue, as well as objective symptoms such as motor issues.
You didn't say what the beer was like at the Ladbroke Arms! Anyway...
I was diagnosed with PD coming up to 2 years ago.
A question:
Have you or any of the group tried CBD products? I have heard that this has worked for some PD sufferers. Could this be a area for future discussion?
Also, one thing that affects my shakes is if I get excited!(Not too much excitement when I watch West Ham at the moment) However this can spoil the moment with the wife if my hand is flapping furiously during a moment of passion. (Another area for discussion?)
There are other things but I'm sure you will cover then during your fantastic podcast.
Thank again. Michael(Mick)Shann
Fantastic Podcast! My dad has had PD for thirteen years and I’ve involved in the Irish Charity Move4Parkinson’s. Love to chat more, we facilitate research based classes dance classes, Choirs, Support Group etc … info@move4parkinsons.com
www.move4parkinsons.com
Hi my name is Tony, live in Bristol 76 years old. I have PD and hydrocephalus.
I am married to Paula, 19years younger than me, the loveliest person I have ever known.
We go to dance for Parkinson’s every Friday.
I talk to everyone about their problems and they all say how relaxed they are with me I help wherever i can, i set up restrung and cleaned a guitar for one of the lads he said it’s lovely to play now how much do i owe you, I said a cuppa and a hug
Makes me feel good, tell myself every day get on with it. Take care everyone
Thank you all for the useful and entertaining podcast.
My husband was diagnosed with Parkinsons 5 years ago and died 4 months ago. His main symptom was difficulty with speech and swallowing which rapidly deteriorated. His death was due to food entering his lungs and causing pneumonia. I think that speech, swallowing problems and all the embarrassment that accompanies this, is a fairly common problem and wonder if it may be a subject worth addressing, I’m afraid that, as his speech and swallowing deteriorated his world became much smaller, due mainly to embarrassment. My husband was a bright, intelligent retired mathematician. The assumption by medical staff, at all levels, was that as they found difficulty in understanding him he mustn’t be able to understand them. The frustration and upset this caused in his final 2 weeks in hospital was beyond measure. I have no doubt this is a problem shared by many in the Parkinson’s community.
So sorry that the live broadcast didn’t work out. I refuse to get excited about the tools for early diagnosis being explored. My husband is the sufferer and the thought of this black cloud hovering over him for any longer than necessary is not a happy one. Find a cure and then identify the sufferers early.
A quick question for Sir Nicholas. I'm a 45 year old solicitor and was diagnosed last year. I've begun to use Dragon voice recognition software as my typing is starting to suffer as a result of the Parkinson's. What microphone does he use with his PC?
My Wife was diagnosed with Parkinson’s disease when she was 52 years old 4 years ago. The levodopa did very little to help her. The medical team did even less. Her decline was rapid and devastating. It was muscle weakness at first, then her hands and tremors. Last year, a family friend told us about Natural Herbs Centre and their successful Parkinson’s Ayurveda TREATMENT, we visited their website www.naturalherbscentre. com and ordered their Parkinson’s Ayurveda protocol, i am happy to report the treatment effectively treated and reversed her Parkinson’s disease, most of her symptoms stopped, she is able to walk and her writing is becoming great, sleep well and exercise regularly., she is pretty active now
I run a Parkinson cafe in Hullbridge Essex and if you are in the area on the first or third Tuesday in the month at 2pm pop in and say 👋 hi
Sherbert Leicester
Thanks for making me smile good to hear you Celebs! have the same problems.
My biggest hate is people asking how you are and really don't give a S......
and then saying you look well. 😀😀
Great to hear Gaynor on from Spotlight YOPD.
I was diagnosed with PD last August at 48yrs old. I emailed Gaynor in January and she called me on the same day. Hated the leaflets that were posted to me. The pictures of the person with Parkinsons and their carer did not represent me. Carer did but not the older person with Parkinsons. Such a relief to know that Spotlight is there for us.
I've been through every range of emotion possible. It's early days but I'm still able to work. I've been cabin crew for 29yrs. I'm working on a blog and hoping to do a skydive for charity. Onwards and upwards! Thanks for the podcast. Good to know you're not alone. Claire.
I confess that when a friend asked me whether I was going to be listening to Movers and Shakers, I said that I couldn't see the point of 'top people with Parkinson's.' That was unfair of me. I enjoyed the first two episodes. Your experiences echoed many of my own. I was diagnosed nearly 6 years ago. Life is (still) good.
I hope that at some point you will look at Parkinson UK's 'Get it on time' campaign. In 2005 my father, who had Parkinson's dementia, was admitted to hospital with nothing worse than constipation. Once there he was not given his Parkinson's drugs and he lapsed into a coma and died. His death certificate says he died of Parkinson's. It would be more correct to say that he died of the NHS. It is an absolute scandal that nearly 20 years later, people are still dying, or suffering unnecessarily because nursing staff do not understand the importance of making sure people with Parkinson's get their meds on time.
I am a former ballet dancer and Artistic Director of English National Ballet, recently diagnosed with “suspected” Parkinson’s Decease. I have been pleased to hear ENB's dance for Parkinson's spoken of on your podcast.
Here is another interesting case report from Aug21. Hope it helps.
Quote:
In this preliminary study of PD patients, a treatment with donor FMT infused via colonoscopy, was safe and resulted in improvement of PD motor and non-motor symptoms, including constipation, at 6 months. Further research is needed to assess longer-term maintenance of efficacy and safety, including in large scale randomized controlled trials, preferably in patients with moderate-severe PD.
https://www.sciencedirect.com/science/article/abs/pii/S0303846721003206
Great podcast. Our pd group closed during Covid and never restarted. This has lifted both my husband - who has had PD for 12 years - and me. Well done.
Hi again. I'm not sure if this messaging service is the right forum for adding relevant clinal trials, so please accept my apologies in advance, if you prefer I get these to you some other way.
This particular trial, carried out in Texas, appears to highlight subjective improvement in these patients.
Parkinsonism is a complex syndrome, involving subjective symptoms such as fatigue, as well as objective symptoms such as motor issues.
Hope this is helpful.
https://www.researchgate.net/publication/368936855_Fecal_microbiota_transplantation_in_Parkinson%27s_disease-A_randomized_repeat-dose_placebo-controlled_clinical_pilot_study/fulltext/6401dcb8b1704f343f9d2a99/Fecal-microbiota-transplantation-in-Parkinsons-disease-A-randomized-repeat-dose-placebo-controlled-clinical-pilot-study.pdf?origin=publication_detail
Another area for discussion maybe food and drink and if a particular diet benefits any symptoms.