Is anyone involved in the drug trial in Br... - PSP Association
Is anyone involved in the drug trial in Brighton under Dr D Chan?Peter 2.
Yes, my husband is. We have already had our first visit and are waiting for confirmation of the next appointment.
dorothy-thompson
Hi Dorothy, thank you for your reply. My husband has been referred to Dr Chan by his consultant. How long did you have to wait for your husbands first appointment? Do you live in the Brighton area?
Peter2
HI Peter2, like CateP, my husband had to wait several weeks. We actually referred ourselves but as we live outside the area in southeast London, my husband's consultant to send all his details to Dr Chan. Our first appointment was thismonth and now we are waiting for our second appointment.
good luck dorothy-thompson
Thank you Dorothy, I hope your husband gets his next appointment soon.
Best wishes
Peter2.
Yes, my mother is - she is taking the medication (drug or placebo) and has been for about 2 months now.
Hi CateT thank you for your response. My husband has been referred to Dr Chan by his consultant but as yet he has heard nothing from Dr Chan and his team. How long did your mother have to wait for her first appointment?
How is your mother on the drug trial?
Peter 2
It was quite a long time from when it was first mentioned by the PSP nurse, Samantha Pavey but I'm sorry I can't remember exactly how long. May be best to try and chase it up.
It is difficult to say there has been any improvement so far. Some days I think - wow, this may just be making a difference and others, when she is having a bad day, I see a decline. I'm trying not to second guess it but rather to give it some more time.
I would love more than anything for it to halt the progress of PSP but I'm also managing my expectations.
I will definitely keep you posted though if I notice any changes.
Cathy
Hi Cathy, thank you for your response, yes I think we will chase up the first appointment. Like you we live outside the Brighton area, but we are happy to try anything that may help to slow down the progress of psp. Will let you now when we eventually get an appointment.
Best wishes
Peter2.
hi Peter 2
please see Israel s latest blgo re davunetide- is this the druig u r talking about
love jill
Hi all, this is my first time blogging. My husband has been on the trials in Haywards Heath under Dr. Chan. since June. Placebo or drug we do not know. There appears to be no improvement or controlling of the falling, poor speech or mobility issue.
I was pleasantly surprised to hear about others on the trial. It will be good to update each other after each visit.
Our next visit is on thursday - visit 4 - a "big" visit in that there will be a number of tests and collecting more of the spray.
Also it took a long time to get the first appointment - we first applied in Jan but only had contact in april/may.
Hi Jill,
Thank you for pointing out Israel's blog. It's heartening to hear someone appears to be benefitting from the drug trial.
At last my husband has his first appointment to be assessed for the drug trial. Fingers crossed he will be suitable.
Best wishes
Peter2.
Hi Denmob,
At last my husband has a date for his first appointment which will be later this month. I agree with you, it would be nice and I think supportive to blog each other with updates after each visit and of course between visits.
All the best for next Thursday.
Peter2.
