Parkinson’s is the fastest growing neurol... - Cure Parkinson's
Parkinson’s is the fastest growing neurological condition in the world – and yet it is still woefully under-researched and underfunded
This is a good read if somewhat sad
Perhaps the line about us wishing we’d never been born was a premeditated tactic to ensure media coverage. But I wish he hadn’t used it.
(I wish I didn’t have Parkinson’s. I also wish I could play piano to concert standard, speak read & write Chinese, remember what I went upstairs for, etc. But wish I’d never been born? Emphatically no.)
The principles of support for PWP that they set out in the charter are reasonable. They are worthy of discussion with the wider community - particularly in the UK where we’d be expecting them to be funded by taxation.
From what I’ve seen, that wasn’t what happened in the media. They focused on Paxman’s death wish. It’s a more magnetic story.
The M&S team includes some experienced media people. So maybe this was the plan.
As the 'Man' says ' it's all about the money'.Don't cure, just keep providing the medicine to treat it.
Can't read the article without a subscription to The Telegraph.
What I read into the headline is that not enough Parkinsons sufferers donate to charities like the Michael J Fox foundation. Or if they do that organisation doesn't deem it good use of money to enable somebody like Dr Jonathan Sackner-Bernstein who comes at the disease from a completely different angle. I can't work out which it is.
However, two of us on this forum has worked it out that it would cost each individual Parkinson's sufferer a matter of peanuts ($2-3) to fund the SB theory trial if we all contributed.
The objection appears to be the fear of such an enterprise being hijacked by fraudsters! Personally I think the risk benefit equation is stacked heavily on the benefit side and at $2-3 what exactly is there to lose?
I have mild to moderate Essential Tremor and this my perspective in research, funding, and support groups.
Essential Tremor is the most common neurological condition but until 2013 it did not have its own medical classification. Prior to then, tremor research mixed Parkinson’s and Essential Tremor patients together. A practice that thankfully appears to have stopped.
M.J. Fox is a stelar spokesperson for Parkinson’s. If wishes were horses all men would ride, and Essential Tremor would have similar representation and there would be an online forum that was half as active for Essential Tremor as HealthUnlocked is for Parkinson’s.
I understand your frustration, but this is like comparing apples to oranges. I have had essential tremor for many years before developing also my resting tremor and receiving the additional diagnosis of Parkinson's as a "gift". While essential tremor can indeed be very bothersome and frustrating, it is different from Parkinson's, which is a disease that can lead to a shorter lifespan and has a less pleasant progression….
You won't die from Essential Tremor unless you starve to death from inability to feed yourself or neglect of your caregiver. 😉
Can you have essential tremor in one hand and not the other, always scared of PD, my Father had it, been tested twice for it, for different reasons, but this time left hand/arm bad reaction of AZ vaccine injection three years ago, got use of left hand/arm last February, but since then tremors more pronounced in left, extremely annoying, getting tested again but appointments for 'test' and diagnosis at least six months, slow going over here🥴🙄
I'm curious as to what "test" the neurologists would conduce for his/her diagnosis.
I have my first appointment with a Movement Disorder Specialists next week. It took about 6 months to get this appointment.
A DaTSCAN is a brain scan to diagnose Parkinson’s disease. It involves an injection into your arm of a radioactive substance called DaTSCAN, which is taken up into various parts of the brain. It emits gamma rays which will be detected by a piece of equipment called a gamma camera. Depending on how it is distributed, we can differentiate Parkinsons syndromes with Essential tremor or Lewy body dementia with Alzheimer’s disease. It sounds bad, but in reality quite straightforward! Please let them know if you have any allergies. That is what is available in Belfast, as I said before state of NHS can be a bit slow, that what happened to me before, I was negative, sorry it was once before in 2016, I was getting essential tremor effects from long term use of Epilim for my Epilepsy.
Thanks claudejgreengrass strange just gathering previous info. like that, I have epilepsy , and there are large periods of blank memory over the years, had epilepsy for over 50 years, but just there those events suddenly returned from 2016, so clearly, like a cloud lifted, weird🤫 I have been going through the worst stages of my life, seven years of pure hell, one medical disaster after another maybe another sign I'm coming through the other side, I have a personal neurologist for a very rare neurology condition Schwannomatosis, hopefully I might not need another scan. I've just emailed her about this now🤞 Good Luck👍
In addition to essential tremor (ET) and PD, I also struggle with a severe form of peripheral neuropathy (PN). Similar to ET, there are many more people who suffer from PN than PD. They do have their own community at HU, but contributions are scarce and the few replies are mostly not very constructive. It is probably the complexity of PD and the emotional impact of its uncertain progression that unites us and keeps us writing endlessly. At the moment, I face more problems and limitations due to my ET and PN than with PD, but it is the latter that will eventually wear me down and that I am fearful of.
Although PD may be more well-known, it does not mean that essential tremor is any less important. Let us support and show understanding for all conditions within our community, regardless of which one we have.
The similarity with PD is that there is no real "cure" for essential tremor and peripheral neuropathy. Although there are treatments available to reduce the symptoms, there is currently no known remedy. “Research and development of new treatment options are underway………….”
Esperanto Well said. I also suffer from both ET and PD and it has been a long time since I differentiated between the two 😩 Funny thing is that while my MDS keeps saying that I have both, there is nothing in my clinical notes that mentions Essential Tremor!
This casual approach to ET is perplexing. But I have to say that I get great relief from Propranolol whenever my tremors become uncontrollable and uncomfortable. I respond well to Primidone as well but I don't take it. One less confusing medication in the mix. The problem is that Propranolol lowers blood pressure as well, so it has limited utility for me.
