PSP Association

Just joined!

This is a weird story but I read some of the entries and felt an affinitity to some of them. I am Jeff's former wife and was his care giver for 7 months until he had to go into a care facility He has been there for 8 months now.

Jeff applied to enter the drug trial in Calgary Alberta and was denied entry due to the fact that he has recently undergone stem cell treatments in both China and Germany.

He is getting worse at an alarming rate so we stay on top of Davunitide news hoping like heck that we can get him in. It seems that Israel was the only entry that was noticibly positive.

Is anyone else seeing good signs?

8 Replies

Hi there....I've only read about Israel on the trial. My husband Frank is being re-assessed tomorrow to see if he's suitable. He nearly was until there was a slight trace of blood in his urine. That's now ok, hopefully so fingers crossed. Will post the outcome when I know.

Take care & keep smilimg. Love Hazel B xx


Hi All, My husband Ed has been in the study going on 16 weeks. Not seeing any improvement. Our study is a double blind, and Ed may not have the drug. His walking is not improving, as a matter of fact, I can see him getting slower. He describes the feeling as being froze. It is so hard, and I love him so much, this is braking my heart, to see this wonderful, patient man fade away. But we still try to joke a lot, share lots of affection. And my goal is just to keep him on his feet as long as possible. We have found speech therapy and physical therapy at Pennsylvania Hospital in Philadelphia. Today is our first day. Looking forward to it.


hi bettynader im sorryt to hear ed has seen no improvement and I think you will find that he will improve with hes speech therapist and phsio maybe only slightly when I went to mine she said I cant cure you but I will try and keep you going which they have done I still fall over and stuff like that but i get up again thats the main thing look im sorry that I have answered this just in case I have just seen that it was written two years ago

I think my posts must be a bit slow but I hope that ed is still ok and you are coping alright I would not to have liked to cause you any pain at all please let me know how he is doing and yourself peter jones queensland Australia psp sufferer today is the 9thy of January 2014


hi guys ,

i wold like you to know that i am going o the jim 5-6 time a week , any muscl that i feel that it going week or stife on me .i am asking the instractor ,wat is the best n]]\\machin for this muscl.i am doing the above wieli am thaking the drug too.

allm the best and never givre up..



Please tell us more about the stem cell treatment in China and Germany. Were the cells fetal cells or adult cells? i am very interested in the treatment and outcome as I am reading the book," blocked in the U.S.A. by William Rader.


The treatment in Germany was done with cell harvested from Jeff and the treatment in China was fetal. Neither had ANY impact!!!!! The practioners in both locations were vague about duration, side affects, quality of cells, and recovery time. They were not vague about getting paid though! A lot of money for no positive results.

I believe that stem cell treatment has a future but for neorological issues, it is still untested.


Do you live in Canada? The mention of Calgary, Alberta made me think you do. The Davunitide trials there have been postponed as I too want to get in them.


Yes we are Canadian. I heard that the trails were postponed as well but Jeff wasn't accepted as a participant from the start. I believe their criteria was compromised by the stem cell treatment he had received. They may possibly look at him again since it is almost a year since his last treatment. Have you heard any potential dates for the trial to begin again?