Hi, Don't know how many of you may have seen this on the internet so I thought I'd post it here for all to see. There is a study of PSP and CBD underway in California. It is a study of the progression of these two diseases. It consists of an initial visit then one in six and twelve months. There are other stipulations which you can read at the following web site. Hopefully it will be a productive study.
Jimbo
hi jim
thanks for that
unfortunatley i am in the UK and shall not be able to participate
good to knwo tha tresearch is beign done
lol JIll
I'm in Australia so also will not be able to participate marytea13
I'm in Australia so also will not be able to participate marytea13
hi there, do u know more about this new study? please answer back. my husband came off a study in oct. it was a nasal mist from canada. he was on the placebo but was doing much better than now. there is a decline now. do u live in orlando? it would be good if u could come to our psp meetings. our next one is april 7th. let me know. im going to call later jennifer foster and get more info. thanks again bubbie
Bubbie, I'm in Orlando. Where does your group meet? Send me the information to my email jim.pierce@gmail.com Thanks. This is not the same study your husband participated in. This is only studying the progression of PSP and not connected to a cure study.
Jimbo
It is a good news .Hope there is hope for PSP sufferers like me
I am no expert but comparing with my mum I would say that 6 monthly then yearly is not enough to incorporate the changes.That was one of the problems we had- the neuro only saw mum this time last year just before she had gone into middle stage, 6 months later she was on the nursing section of a home and now it is a year gone mum has just passed away!
We would have had at least one more appointment but every time one became due mum was ill and we had to postpone. Because the Neuro was so busy we could only book 3 months in advance! Ridiculous! But the fact that pwPSP become unstable should surely mean more regular checks!
Appreciate your comments. This study would be good input from my wife. She is progressing slowly so a study of the progression would work in her case.
Jimbo
Couldn't make much sense of my ? to you, so I deleted it & starting over.
I spent time looking over the info at the link you provided. I know almost nothing about research studies. If a person were to apply and pass the necessary criteria, would the facility perfoming the study pay for travel expenses & temporary housing expenses if a stay is required at some point in the steady, or is the participant supposed to pay all expenses? I looked, but couldn't finds answers. Do you know how that is dealth with, Jimbo?
Judy, I'm not sure if they would pay. I know that we are involved in a study at the University of Florida and they pay travel plus $75 each time we go. First time we went they paid for the hotel we stayed in plus meals and travel. It's about 118 miles one way for us. We go once a year for this particular study. In fact it will be coming up next month again I think. You could contact the study at their site and find out how it all works.
Jimbo
thanks Jimbo, I'm glad to hear the news although the hope is still far far away... I'm in China, so it's difficult for us to participate the study, we'll wait.
Hello Shelly in China. Glad to see we have internationals outside of Canada, Austrailia, UK, New Zealand, etc. Is it you or your husband that has PSP? Is the one with PSP Chinese or American or ???
Jimbo
Hi Jimbo, It's my farther suffered with the PSP. All of our family live in China. My farther was diagnosed 5 years ago, we also tried Chinese herbal medicine and acupuncture and try to slow the diease down, sometimes it has some effect, but the diseae is still developing and getting worse. when we heard the Davunetide was failed, we feel so sorry and hopeless.
Hope a new medicine can save thouse people suffered with PSP..........
Shelly, Yes PSP is tough for us who have to deal with it. Wish they knew what triggers it in certain individuals. I'm sure one day there will be a treatment to stop it in it's tracks but that may be in the distant future. We can continue on and hope for the best but deal with the present.
Jimbo
You are right, Let us be strong
Hello Jim, best wishes to your wife. My Daddy died from PSP a few years ago. I started a group on Facebook called "PSP in the USA" and I'll post the link there. You should join too if you like (as can anyone reading this!) The group has grown by leaps and bounds, sadly. Again, best wishes and prayers said for your wife and you!
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