Will davunetide just stopo brain detioriation or restore it over time?

[jimandsharynp]

Does anyone know if the new drug, when released, davunetide will help stop PSP or will allow the brain to regenerate lost capabilities over time?

[Kathy]

From what I understand it will only slow the progression of the disease rather than "stop" it. Once brain tissue is damaged it does not regenerate but it can adapt - not sure that Davunetide will have an effect on that though.

Sadly it is not a cure but it is the best hope of any kind of "treatment" there is at the moment.

As the drug is still very much in the trial stage and still has to be shown to be effective I think it will come "too late" for most people who already have a diagnosis of PSP but time will tell.

[jimandsharynp in reply to Kathy]

Thanks, I'm sure it will be too late for those diagnosed already. Hope for others though which I appreciate.

[dorothy-thompson]

Dorothy-Thompson

My husband is on the Davunetide drugs trials based in Haywards Heath in Sussex. We have been told that, at the moment, even it the drug is effective, it will not be available when the trials are completed. The reason? - MONEY.

My husband is deterioating fast and yesterday I spent over 2 hours trying to persuade him not to "end it all". He falls several times a day, our house is like a battle zone. But I know from what I read on the forum, he can and will get worse.

For over a year now, I have been trying to get a Continuing Health Care Assessment for him. All agencies I approach tell me about various schemes, the lastest one was having your own personal budget so that YOU can choose what care is needed.

After initially seeing my doctor, I was contacted by our community health department, told that my husband would be first be assessed on his "needs" and a district nurse would do this. Then we were contacted by the Social Services, who completely misunderstood the situation and talked about "social care", washing etc. My husband does not need social care - which is means tested in the UK but not in Scotland - he needs professional medical health care which is funded by the NHS. But the more one reads about "Continuing Health Care", it appears that it can be almost impossible to get, even if - and I quote - "YOUR CONDITION IS TERMINAL" The reason for all this prevarication is - MONEY

I listen to all these wonderful people from all our many agencies, The NHS, Social services, The Care Commission etc, talk about "care commissioners for the elderly", "care commissions must be set up", we must do more about the "care for the elderly" we must look after the "Carers" - you know them, those millions of us who are daily saving this great country of ours billions while the bankers fleece us dry - and think, its all about their jobs and nothing to do with "care".

Today I try and get yet another appointment to see my gp but am told that when I want that appointment, the doctor has a diabetic clinic. I then make a "stand" and am put the doctors "duty" rosta for tomorrow morning.

In the meantime I am, like many of you, going quietly mad.

Thank you all for allowing me this rant, I feel slightly better now.

Good luck and best wishes

dorothy-thompson

[judy1962]

It won't help the caregivers

[PSPA_JillL]

Dorothy I am pleased you are getting support from this site but do remember you can get support also from the PSPA please phone the helpline on 0300 0110 122