It’s amazing how quickly the Covid vaccine was produced and made available! A little more effort and cash for other drugs would in the long-term be a good investment.
Excellent, we need to raise the profile of the condition and put pressure on government to fund research. Parkinsons is now being diagnosed in younger people so we need to discover why. Friends of Parkies, which is a local support group which is based in Oswestry Shropshire of which I am the secretary, have a membership of 48 and the shocking thing is over 50% of our members were diagnosed within 12 months of experiencing a major trauma in their life. Is trauma a trigger for the condition ?
Hi - started to read this as saw you on Saturday on the BBC. Listened to your first podcast too. Thank you.
My brother was diagnosed age 28, he’s now 44. This post is fantastic to help people know there are places that are interested in learning about the condition. My brother spent years and years doing his own personal research, measuring things, making log books and trying every sort of diet and movement therapy. I just wish he’d be able to share it with someone who can make a difference.
He lived in Paris when he was diagnosed and met so many doctors, also in Mexico and finally had to move back to the UK (for family support) to a region that I think has not served him that well. (Ny opinion!)
It’s all been about drugs, rather than trying to find out what can be gained from learning more from people (like him) who have a vested interest in what they are learning and how they live with the condition.
How can we contact centres like this ? These researchers are the way forward as the current NHS teams are under so much strain, and I think day to day neurologists are probably so overworked they cannot even contemplate the alternatives to simple drug prescription that’s easily administered and up to the patient to deal with that after affects.
Regarding Ambroxal, If you work through a timeline for the remaining developments required to get it ‘to a chemist near you and me’ , it can be seen that it will not be available until the early 30s. This. At the earliest, and assuming a good signal in the trial.
So I fear that your estimate of 2030 for the NLK drug is rather optimistic
All this goes to the bigger point that the system for drug development for PD, and I suspect more widely, is badly failing its key user group, namely us.
Rory , Thank you for participating in this trial . My late father had rigid Parkinson’s and was miserable for his last five years . It’s about time a new drug was developed, i believe it’s taking longer than it should . It’s seemingly slipped down the priority list 😬. Love to Sophie .
Enjoyed the podcast …. Really funny but with an obvious serious side to raise awareness of this condition… Jeremy you crack me up :) Brilliant humour. Paul I attended the show on Saturday night in Preston, I made reference to you and Billy Connolly:) great you took the time to meet everyone who was attending, glad it wasn’t the Albert Hall you’d still be there welcoming people in!! Looking forward to the next podcast.
It’s amazing how quickly the Covid vaccine was produced and made available! A little more effort and cash for other drugs would in the long-term be a good investment.
Excellent, we need to raise the profile of the condition and put pressure on government to fund research. Parkinsons is now being diagnosed in younger people so we need to discover why. Friends of Parkies, which is a local support group which is based in Oswestry Shropshire of which I am the secretary, have a membership of 48 and the shocking thing is over 50% of our members were diagnosed within 12 months of experiencing a major trauma in their life. Is trauma a trigger for the condition ?
Phil Bowen
Hi - started to read this as saw you on Saturday on the BBC. Listened to your first podcast too. Thank you.
My brother was diagnosed age 28, he’s now 44. This post is fantastic to help people know there are places that are interested in learning about the condition. My brother spent years and years doing his own personal research, measuring things, making log books and trying every sort of diet and movement therapy. I just wish he’d be able to share it with someone who can make a difference.
He lived in Paris when he was diagnosed and met so many doctors, also in Mexico and finally had to move back to the UK (for family support) to a region that I think has not served him that well. (Ny opinion!)
It’s all been about drugs, rather than trying to find out what can be gained from learning more from people (like him) who have a vested interest in what they are learning and how they live with the condition.
How can we contact centres like this ? These researchers are the way forward as the current NHS teams are under so much strain, and I think day to day neurologists are probably so overworked they cannot even contemplate the alternatives to simple drug prescription that’s easily administered and up to the patient to deal with that after affects.
Sorry - not you, but Paul Mayhew-Archer :)
Rory, thank you so much for your work.
Regarding Ambroxal, If you work through a timeline for the remaining developments required to get it ‘to a chemist near you and me’ , it can be seen that it will not be available until the early 30s. This. At the earliest, and assuming a good signal in the trial.
So I fear that your estimate of 2030 for the NLK drug is rather optimistic
All this goes to the bigger point that the system for drug development for PD, and I suspect more widely, is badly failing its key user group, namely us.
Rory , Thank you for participating in this trial . My late father had rigid Parkinson’s and was miserable for his last five years . It’s about time a new drug was developed, i believe it’s taking longer than it should . It’s seemingly slipped down the priority list 😬. Love to Sophie .
Enjoyed the podcast …. Really funny but with an obvious serious side to raise awareness of this condition… Jeremy you crack me up :) Brilliant humour. Paul I attended the show on Saturday night in Preston, I made reference to you and Billy Connolly:) great you took the time to meet everyone who was attending, glad it wasn’t the Albert Hall you’d still be there welcoming people in!! Looking forward to the next podcast.
John