A lot of research is going on PSP Parkinson. Anyone is participating ? My mother has developed PSP and her condition is deteriorating rapidly and I feel I am only a mute spectator and helpless ..
I am sharing the medical reports and short video of my mother .
drive.google.com/folderview...
Looking forward when a cure for PSP will be found .
Here! Here!
S is not taking part in any research. He would be extremely interested in doing so, but nobody has even bothered asking him his past history, much less when we think PSP started! How can they find a cure or even something that might help, if they don't ask questions to the people who actually have this "£&@&££&&@" disease or us carers!!!
Wouldn't hurt of few of these researchers to read some of our blogs, but I bet they don't even know it exists or care!
Lots of love
Heady
i understand research is going on and very soon a treatment will found. I surely hope so .
Hi
My dad has PSP with Parkinsonism (as if PSP on its own is not enough!) - and it hurts so much to see him struggle with everything that was so normal, just a year ago. He's not participating in any research - there's been no interest as far as I can see. Yet another illness to do with aging population... but younger people can get it too! Here's to some good research + a cure or at least more understanding. Everyone suffering from this deserves that.
On this last Monday of October, a shout-out to all PSP sufferers and their loved ones xxxx
Hi Lieve, the problem is, this is NOT a old persons disease! That's just when the symptoms start showing. My husband has been showing signs (with hindsight) for many years. He is now 70. This is such a slow illness, if they are right about this Tau growing around the neurons, it must take a long time for the symptoms to start to show, so who knows what age it starts. I'm afraid, my theory, for what it's worth, thinks they may of had it from birth!!! So the researchers are looking in the wrong place, if I'm even slightly right! Who knows how many people may have it, that never get to show symptoms, either they die early, how many car crashes have been caused by PSP? Or just the Tau grows at an even slower rate than our loved ones. It's a wonder S got to the age he did, with his driving, liked rock climbing and we hiked for hours on end in very remote places, I thought the falls then, was him tripping over loose rocks. It doesn't bare thinking about!!!
But who is there to tell about this? Who even cares?
Lots of love
Heady
I care ..
All of us who has seen the suffering from PSP / Parkinsons cares
PSP / Parkinson may have genetic causes, viz we may get affected tomorrow.
The protein tau (encoded by the MAPT gene) seems is responsible for the disease.
I understand research is going on .
I feel we can contribute for more and focused research in these areas rather than silent spectators . I think we can crowd fund research .
If you agree with me please help to gather support for fund research , share statistics .
I am sharing the medical reports and short video of my mother .
drive.google.com/folderview...
Internet is a very strong media to connect and help ..
My details :
Siddharth Roychowdhury
A 2/1 , Happy Nook ,
EKT , Kosba ,Golpark
Kolkata , India
Mobile +91 9883225454
email hmail4src@gmail.com
what can you do ?
Help to build up a community .
Help is crowd funding
Help in donation .
Help in sharing medical history , video , medicines used etc ..
I am not doctor but I will give my best efforts to bring out a cure ..
Lets see .
I totally agree about the disease having a long long slow development. My husband is now 72 and I know it started slowly slowly many years before any back major sign of it. Also his father died of this disease at 73 and, gee I guest it IS hereditary, Oops they are wrong about that too. I saw the first signs with my husband in 1983 and my father-in-law was struggling many years before he retired.
It would be nice if the doctors would listen to the people, us, who have the most data to share. Also I believe this illness is way under diagnosed as Alzheimer's, and Parkinson's. It is not as rare as they think. It would be interesting to go to a conference, but I am completely sure that no one would listen. I think the arrogance of the medical profession has always delayed research.
When I spoke to my husband's doctors years before he was diagnosed they just treated it like a joke..."Oh that's just how your husband is."
Jill-in-Costa-Rica
I agree, Heady - that came out wrong, I meant to point out that's how researchers (if any) see it. Especially if you have the 'extras' of Parkinson's & dementia thrown in... why would they bother looking any further - it's all part of getting older bla bla bla but yes, who knows how long PSP was present and silently lingering until the symptoms became obvious... My dad had some bad falls in the house years ago, just 'slipped' on the rug - maybe it was the rug, and maybe it wasn't...
Lots of love back to you
Lieve
But what do we do about Lieve? How do we get these researchers to listen? Nor have another generation got to go through the same? Somebody, some where, will have to listen to us, if they want to have even the slightest chance of curing PSP
Sorry, my reply just disappeared from my screen with out me finishing it!!!
I agree with rug accident, how many times over the years has that happened and to how many people? One question that has just come to me. I was listening to radio about some condition and they were talking about a spectrum for this particular illness. Is there one for PSP? On this site, everyone is full blown, but are there others out there, not diagnosed because the symptoms are not as obvious? Therefore below the researchers radar!!!
I know any research will be too late for S, but if they don't talk to him NOW, it will be too late to get any valuable information from him! We could write down what we think, but unless someone asks questions, we can't give the answers. Who knows what we could all be totally ignoring, thinking it's just S being S!!!
Lots of love
Heady
Lets try crowd funding and focus research . No need for finding faults with the system . Are you with me ?
If there is really nothing there yet, we should start something - we would be a formidable source of information for research - how to go about it? I have time right now, looking for a job, so could spend some time on this.
pl comment on hmail4src@gmail.com
done! x
sure pl connect at hmail4src@gmail.com
Ok, there IS research going on at the association level - I don't see any point to start any crowdfunding and dilute the efforts - we have to send our concerns and questions there - either in the UK or USA. I can't find anything in Belgium maybe in the Netherlands. So, I'm sorry if I have my doubt, but hmail4src, I question why we should be involved in fundraising via you.
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