Davunetide - How's it going?

[daughter_Julie]

I was just wondering if anyone had any feedback as to how they felt the davunetide study was going? It's the last bit of hope!!!

[dorothy-thompson]

Dorothy-Thompson

My husband has been on the Davenutide trials since August 2011, of course we do not know if he is on the drug or the placebo as the selection is random. As to progress or otherwise, it's difficult to tell, he is still able to walk small distances with assistance, he eats well and does not have any real problems with sleeping. He swallows ok but does cough a lot to clear his throat. He exercises as much as he is able as we have been told that this is the only possible thing that may help his condition. He is beginning to fall more and more lately but thankfully has not damaged himself in any way apart from some bumps and bruises. He can be very aggressive sometimes but that is put down to frustration with his condition, well duh! We do not get any help from anyone, all the "services" have lots of platidues but no real action because they do not know about or understand PSP. Oh - I forgot- he has a blue badge which has been a life saver.

chin up everyone, nil desperendum

[bettynader]

My huband has been in the Study also since about May 2011. You are correct it is difficult to tell since it is a blind study. All I can say is that he is still on his feet, in a U-Step walker, but I do not allow him to walk without assistance or someone at his side. We have been able to avoid Falls because of this. He also, is still eating fine, and some coughing when taking liquids. He sleeps well also.

But I can see that the illness has progressed somewhat since we started. Maybe slower than most. Just not sure. But he is never left alone.

Betty in Philadelphia

[daughter_Julie]

That's very interesting, thanks for responding, I'm sure it is of interest to everyone. I guess it's great that neither of you are seeing a speedy decline!! My dad took part in the nypta trial, which sadly didn't help a jot. The interesting thing to see over time will be if there is a cumulative effect to be had from this drug.

I know what you mean about the lack of help dorothy, I simply can't understand it. Mum doesn't get any help whatsoever, which is just wrong. Crossroads £25 an hour is insanity. There is no support to be had at all. The blue badge is indeed the only saving grace. What a price to pay for a decent parking spot!

[jillannf6]

hi julie

i get the dla at higher rates (turned down b4 dignosis and now have it ) helps pay for care and taxis

i get some help;f rom the lcoal council via

1 direct payments for my carer who comes in 14 hours per week

2 blue badge

3 am gettign a n ipad with the appropriate package (from assistive technology ) for converting txt 2 speech

but i agree u really have to Fight for everythign and cutbacks in spendign are hittting hard!

love jill adn a

[jillannf6]

and a