Just read on Facebook a post about Parkinson’s Disease Stuff that works. Has anyone heard of this before? I would have thought PUK forum would be the one place people would go to get information on Parkinson’s? Also local groups, but Stuff that works sound suspicious to me.
and what is the stuff that works, if I may ask
Don’t know. That’s why I’m suspicious!
I have seen the ads on facebook and did a little investigation - Stuff that Works is a tech startup (ie a new company) basically crowd sourcing ideas - so it is relying on people signing up and contributing their ideas. Personally I wouldn’t bother looking at it, I know in some facebook groups random people give all kinds of dodgy advice. I would rather take my medical advice from doctors.
On a forum like this one it is useful to hear anecdotes of other people’s experience, but what ‘Stuff that works’ is attempting is to put together lots of anecdotes and pass it off as being more than that.
Thanks for the input Kira. I thought that might be the case. They’re getting a wide berth from me then. Barge pole treatment as well.
I replied to one of their surveys and mentioned I had seen a consultant. I got a rather mean reply deriding me. What on earth was I seeing a consultant for? I don’t bother anymore.
PaddingtonB21, I was a little sceptical of them to. Haven’t had a reply from them yet but I posted on their fb page, I would rather get advice from consultant than stuff that might work. Not going to hold my breath waiting for reply though.
It’s a rule of thumb that any ‘miracle’ cure on Facebook is 100% guaranteed a scam. Any and I do mean ANY breakthrough will be headlining on major news outlets first NOT Facebook!
I take your point Craftyclara.
Stuff that works is just a group where people with the same condition discuss tips and advice on things that have helped them with their condition.
It is a support network.
There is Currently a discussion between members regarding using vitamin B1 based on research done by an Italian consultant.
I find this group both interesting and helpful.
LIkewise Littleoldme…those that are frightened by other people who kindly share their anecdotes to help others should think about how much progress the pharma companies/mainstream researchers have made in finding stuff that works in their line of lucrative business…it’s basically been the same since levodopa was discovered decades ago, so that’s why we are all so interested in anything random that might help us in our short time left before we die! If they came up with a pharma solution today it would most probably be too late for most of us by the time it got through all the red tape and became available anyway!! I watched my father deteriorate with poor quality of life from what the consultants had to offer, which caused great distress to the whole family and eventually led to his death. Maybe, just maybe, the so called experts are looking in the wrong places all these years and something simple and not patentable may just help us before it’s too late. We are not silly enough to believe everything on FB etc and after a bit of research soon sort out the scammers from the genuine. I am very interested to hear about the Thiamine high dose therapy also and there’s so much good info about it on youtube videos for similar conditions CFS Fibro ME etc and many parkies reporting benefits. It basically says some of us have problems converting thiamine and as we age the problem gets worse and they have found certain genes cause this problem…there’s a science to it and it needs to be looked into further, but this kind of anecdotal social media stuff has given rise to this being investigated further which could lead to the breakthrough we all hope for. It is almost certain now that Parkinson’s starts with a problem in the gut, leading to a lack of dopamine in the brain. A consultant from Italy (Sadly died recently) was on to this many years ago and although high dose Thiamine (B1) is not a cure, if it stops further decline of symptoms(according to him and many others), especially if given early and it is shown to be safe, then why not try it until they (the so called experts) come up with a better idea…if they ever do. Most Doctors and Consultants here in the UK would poo poo anything like this and yet if you look up “lack of B1 symptoms”, many overlap with Parkinsons in the early stages. Doctors rule this out as they test blood for levels, but that’s the catch maybe, as now it’s ruled out if you have it in your blood and it’s very difficult to test if it then gets converted and into the cell’s so that’s as far as they go down that line and start looking for other reasons and treating the symptoms. The theory is by saturating your system with B1, it somehow forces some into the cells by other methods that are far too complicated for me to understand, but I can see the hypothesis. How many of us went to our GP’s many years before getting diagnosed, complaining of the same symptoms associated with B1 deficiency…many if you look at the data. B1 is not going to make anybody wealthy, so I can deduce it may not be a scam and worth a try for those that want to be involved in their own progression and who have researched for any dangers. I hope, while we temporary fix ourselves, that the really clever people (not doctors and consultants who are only a bit clever!) who understand about the conversion part of it can come up with a fix…maybe an enzyme we lack to convert the B1 instead of forcing the B1 into the cells, we can just have that instead. In the meantime…I feel my body is coming alive again…it’s almost like the awakening where each day I have less of all my many symptoms and to me…that is defiantly something to go on!! Thanks to all those that shared their anecdotal experiences that got me looking into this and I hope to see many more get relief from whatever they may try. Good luck
I am now on day 10 of high dose thiamine and over past 2 days I’ve noticed an incredible difference. I feel in general so much better, no restless legs past 2 nights, a marked improvement in my movement. Its the best supplement I’ve tried and believe me I’ve tried everything under the sun.