Expert interview about PSP and possible cause

[GonnaMissDaddy]

I'm in shock right now, after watching the video:

uctv.tv/shows/Progressive-S...

[Joeglad]

A very interesting film. At least she offers some encouragement that research is going on and clinical trials. Interesting theories about causes too. I wonder how many on here would recognise any of them.

Well worth a watch.

[NannaB]

I'm not in shock as I'd heard/read the theories before but it is a very interesting. When first diagnosed I thought of all the causes it could have been and wondered about pesticides or something in the soil as our estate was built on what was a nursery. A friend who lived almost at the bottom of our garden in the road behind was diagnosed with motor neurone disease the same month as my husband with PSP. His symptoms, apart from the eye gaze were very similar. Sadly he died within 2 years. I've spoken with his wife, a friend, about causes and pesticides have been discussed but if they are a factor then there must be something else as well as she and I did more gardening than our husbands and no one else on the small estate is affected, I sincerely hope not anyway.

It's good to know there is much research going on around the world.

Thanks for posting.

X

[kryste]

I have been saying to Aunt Bev all along enviromental with the neighbor 2 houses down having the same thing happening to him it has to be something enviromental and they both use well water and the lady inbetween us has nuroligal problems thanks for sharing Im calling them first thing in the morning

hugs Kryste

[myjual7]

Interesting

[Amilazy]

Thanks for the link very interesting.

This is an intriguing interview, it's observation that agricultural chemicals could be a major factor ties in with personal observation in that many PSP patients in North Wales and Shropshire PSPA groups have connection with farming or close to farm land (OK we live in a rural area) has been a constant topic since M and I started going to the meetings 4 yr ago. The neurologists always disputed the claim saying no evidence but it seems to be coming out as a high correlation in the stats of admittedly a small study 300 actuals and 300 controls is something. Also her comments on antibody research is promising for future.

I have shared the link with my group of support professionals, may be PSPA should do same.

Best wishes Tim

[Glyder in reply to Amilazy]

My dad was a farm worker and he also died of PSP awful watching him detereate

[Coocoo]

My mum was agricultural and from the Meditarranean drinking well water. She avoided toxins all her life and now has had PSP for over 5 years - can't talk, hardly breathing. Just awful.

[Andyclairea1]

Goodness how interesting. We live on the outskirts of a city where there is farming, perhaps not so much now but certainly when my father was growing up. He also worked in the ship building industry as well as in the merchant navy. Just considering the metal element. They used to link Alzheimer's with dental fillings so perhaps the metal issue is also a factor. Very interesting hopefully they continue the research and find some concrete answers in the near future xxx

[NanBabs]

Very interesting. My first thoughts were that P has never drunk well water and has never lived on a farm, however he has always lived in our (used to be) small town surrounded by farmland; then I remembered that, in his youth, he visited the continent and worked in the vineyards of Southern France during his student holidays. He also worked at Harwell (Atomic Research) straight after leaving school, as a research assistant. I wonder what kind of chemicals were used then ?

[Tokki]

Interesting in as much as none of the possible causal links apply to Bugs. We moved here in 1983 and before that she had always lived in a urban environment. Her Dad grew veg. in the back garden as we did but always organically. Mains water always. Farmland around us but wheat/barley so where is the connection? 8 of our neighbours moved in when these places were built in 1955/6 and are all into their 80's and generally fit a fleas.

I hope a cause and treatment are found sometime. It is such a wretched illness.

Thanks for the link.

[ketchupman]

OMG! Dr Litvan was the doctor who determined my wife had PSP. She used to practice at the University of Louisville, here in Louisville, Kentucky. In 2011, she saw Kim and immediately determined Kim had PSP, whereas the other doctors at UofL did not catch it. We enrolled Kim in the study she is referencing and also in the Davuentide drug trial, which was not successful. But I don't think Kim had much exposure to well water, but maybe some as a child. She was a hair stylist for a few years prior to diagnosis, but she didn't use a lot of chemicals other than hair color. I really liked Dr Litvan and hated to see her leave Louisville. But traveling across the US to California is a bit too far.

Ketchupman

[Robbo1]

In 2003, my husband was weed killing the lawn with double strength weedkiller, as single strength had not worked. I told him that he should be wearing a mask, but he thought he would be OK. The next night, he woke up choking. The following day, his face had dropped at one side and he had a metallic taste in his mouth, also, he could not smile. A medical friend said he thought it was Parkinson's. Tests showed that my husband had had a small TIA and the neurologist diagnosed Parkinson's Disease. In 2011, I read about PSP and after 2 years of asking, they did an MRI scan and said that my husband had PSP. Was it the chemicals in the weedkiller, I wonder?

[Tttp]

Hi what film are you talking about? I am in the US, my brother was diagnosed a couple years ago with PSP any information about it I would read, as we all know have read the many causes that it maybe could cause PSP,a lot of speculations, I do wonder about pesticides, agricultural chemicals we live out in the country, where it's mostly farming so a lot of pesticides used here plus the fly over and spray the fields, I always wonder oh boy what they are spraying will probably harm us or we will come down with some strange disease, my brotherr was in the USNavy over in Vietnam when they were spraying chemicals, in the jungles a lot are now suffering with all kinds of things cancers, Parkinson's the Department Veterans Affairs gas now added PSP on there disability list, calling the toxins used Agent Orange. I do pray all with PSP that one day they will find a cure for this terrible disease. Blessing to all. Nettie

[Millidog]

Thank you for posting this information. Interesting to hear but I think for as many people who lived in rural areas, drank well water or worked in agriculture there are as many who have led truly urban lives. My husband lived near London, Leeds and Manchester, worked in low risk city or office roles, never did a jot of gardening or agricultural work and spent most of his time sailing, on a motorbike or golf course. I dearly hope that continued research can find a cause and a cure for this most horrid disease and I hope we can all continue to raise PSP profile and understanding so our loved ones and those in the future get the support, help and understanding they need and deserve