I’m up for it! I am already part of Biobank (https://www.ukbiobank.ac.uk/) so experiment away! I am 73 and have no symptoms of Parkinson’s, but if I develop it, I would love to help people in the future.
As the ex partner of a man diagnosed in his early 40s with PD, personally I'm not convinced about exercise slowing progression. That's because, since his early 20's he has been, and still is, an almost religious 3 times a week gym and certainly doesn't live a sedentary lifestyle. Trust me when I say this guy pushes hard at the gym!
In your Movers and Shakers or Subtrack capacity, I thought I’d bring this to your attention to ponder. A way of forecasting PD is valuable but The Lancet announces something to make a real difference to those with living with PD now,
See the link to the latest Lancet neurology article below. It’s great news. How wonderful it would be for many suffers to have an even flow of medication, to have a more predictable and constant quality of life.
But…. How long will it take for this to become available? What loops and hurdles will need to be addressed? What meetings, what bureaucracy will need to be laboriously followed when real lives could be improved. I believe, if only “the system“ allowed fast tracking of winners. Thousands of Parkie people would benefit. If we had good news rolled out sooner, the NHS budget could benefit from significant savings in some cases.
I know you have found many other similar ‘all too slow’ progress situations.
I am currently hugely frustrated having been on the high profile Exenatide (diabetes drug) trial led by UCL. We are awaiting communication regarding the trial results. I believe I was on the drug rather than placebo throughout this trial (I have sound reason to believe this despite being double blind etc). I injected myself every week for two years. My symptoms didn’t get any worse during these two years but have got worse since. If I’m right, that the drug worked for me, think about that, that’s a big statement.
It’s just SO SO SO frustrating to feel the lack of energy and pace in releasing medications for the benefit of Parkinson’s patients.
I’m told staff shortages, someone being on maternity leave and timescales driven by Astrazeneca are responsible for the lack of any news/journal publication. This is not acceptable, surely?
Can we move and shake the government/research world into feeling what is like to wait? It’s a job for many of them whereas it’s my life and your life. I’m very grateful to research and progress made but let’s face it, there’s not been much for the last 50 years with Parkinson’s. Can we press the fast track button, the golden buzzer?
This would have really helped my husband. He started REM sleep disorder about 5 years before his diagnosis. I happened to listen to a podcast about sleep and sleep disorders where they stated that approx 40% of people with REM sleep disorders go onto develop neurological problems and it was best to get it checked out. He mentioned it to his doctor who didn't know what he was talking about and nothing happened. Diagnosis eventually came after a suggestion that he saw a neurologist from a knee specialist that he was seeing as he was dragging his foot. An earlier diagnosis may have helped with increased exercise and workplace stress avoidance. So yes, I think it's a plus - but GPs must be more aware of it.
Unfortunately, while this is news is probably irrelevant for Parkinson's sufferers it is good news for the insurance industry. They are gearing up to demand a raft of tests (everything from cancer to the bubonic plague) before you take up life and health insurance. These so-called pre-conditions will impact your benefits and claims and may exclude you totally from being able to access any insurance or private health cover. This particularly affects people in the US and Australia where private coverage is seen as a way around the over-pressured public health system. By the way. A shout out to Australia's public health system which treated my prostate cancer for free using a radiotherapy technique developed in the UK. Thank you all health workers.
My fella had idiopathic REM sleep behaviour disorder (iRBD) for at least 15 years before anyone decided to check him for PD, but by then he had developed many more symptoms. Unless you are a PD doctor, you will know next to nothing about it,so why would you put someone forward for tests?
My God! I can barely deal with my diagnosis now! I’m 72, it would destroy me to have known about it in my early 60’s. I’m with the comedian…unless it’s about a cure, I don’t really want to hear about it! With apologies, I’m still very angry about my diagnosis. (And yes, I’m doing everything I I can to mitigate its progress.)
I’m up for it! I am already part of Biobank (https://www.ukbiobank.ac.uk/) so experiment away! I am 73 and have no symptoms of Parkinson’s, but if I develop it, I would love to help people in the future.
If the research is right and vigorous exercise can slow progression, then the earlier you know the better…
As the ex partner of a man diagnosed in his early 40s with PD, personally I'm not convinced about exercise slowing progression. That's because, since his early 20's he has been, and still is, an almost religious 3 times a week gym and certainly doesn't live a sedentary lifestyle. Trust me when I say this guy pushes hard at the gym!
Rory and other readers,
In your Movers and Shakers or Subtrack capacity, I thought I’d bring this to your attention to ponder. A way of forecasting PD is valuable but The Lancet announces something to make a real difference to those with living with PD now,
See the link to the latest Lancet neurology article below. It’s great news. How wonderful it would be for many suffers to have an even flow of medication, to have a more predictable and constant quality of life.
But…. How long will it take for this to become available? What loops and hurdles will need to be addressed? What meetings, what bureaucracy will need to be laboriously followed when real lives could be improved. I believe, if only “the system“ allowed fast tracking of winners. Thousands of Parkie people would benefit. If we had good news rolled out sooner, the NHS budget could benefit from significant savings in some cases.
I know you have found many other similar ‘all too slow’ progress situations.
I am currently hugely frustrated having been on the high profile Exenatide (diabetes drug) trial led by UCL. We are awaiting communication regarding the trial results. I believe I was on the drug rather than placebo throughout this trial (I have sound reason to believe this despite being double blind etc). I injected myself every week for two years. My symptoms didn’t get any worse during these two years but have got worse since. If I’m right, that the drug worked for me, think about that, that’s a big statement.
It’s just SO SO SO frustrating to feel the lack of energy and pace in releasing medications for the benefit of Parkinson’s patients.
I’m told staff shortages, someone being on maternity leave and timescales driven by Astrazeneca are responsible for the lack of any news/journal publication. This is not acceptable, surely?
Can we move and shake the government/research world into feeling what is like to wait? It’s a job for many of them whereas it’s my life and your life. I’m very grateful to research and progress made but let’s face it, there’s not been much for the last 50 years with Parkinson’s. Can we press the fast track button, the golden buzzer?
Can we make a few things happen?
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00273-4/fulltext?dgcid=raven_jbs_etoc_email
Sincerely, Alison Elkin
Age 66, diagnosed with PD 8 years ago,
This would have really helped my husband. He started REM sleep disorder about 5 years before his diagnosis. I happened to listen to a podcast about sleep and sleep disorders where they stated that approx 40% of people with REM sleep disorders go onto develop neurological problems and it was best to get it checked out. He mentioned it to his doctor who didn't know what he was talking about and nothing happened. Diagnosis eventually came after a suggestion that he saw a neurologist from a knee specialist that he was seeing as he was dragging his foot. An earlier diagnosis may have helped with increased exercise and workplace stress avoidance. So yes, I think it's a plus - but GPs must be more aware of it.
Unfortunately, while this is news is probably irrelevant for Parkinson's sufferers it is good news for the insurance industry. They are gearing up to demand a raft of tests (everything from cancer to the bubonic plague) before you take up life and health insurance. These so-called pre-conditions will impact your benefits and claims and may exclude you totally from being able to access any insurance or private health cover. This particularly affects people in the US and Australia where private coverage is seen as a way around the over-pressured public health system. By the way. A shout out to Australia's public health system which treated my prostate cancer for free using a radiotherapy technique developed in the UK. Thank you all health workers.
My fella had idiopathic REM sleep behaviour disorder (iRBD) for at least 15 years before anyone decided to check him for PD, but by then he had developed many more symptoms. Unless you are a PD doctor, you will know next to nothing about it,so why would you put someone forward for tests?
My God! I can barely deal with my diagnosis now! I’m 72, it would destroy me to have known about it in my early 60’s. I’m with the comedian…unless it’s about a cure, I don’t really want to hear about it! With apologies, I’m still very angry about my diagnosis. (And yes, I’m doing everything I I can to mitigate its progress.)