The Neurologist

[LyndaEllis]

I just returned form seeing the neurologist. (4 hours drive) It was a waste of time! He said that Davunatide would not be available by perscription next year! I was told by "allon therapeutics" that either next year or the year following that it might be available, depending on whether it is accepted or not. Perhaps somebody knows more details? I am hoping that it is -since it is my only hope of getting more functional.

[kay1]

Lynda, it is like so many of the medical trials, they are all so futuristic, hope is raised for the people that need help now but realistically it will be the sufferers of years to come that will get the benefit - I am selfish in as that I get no great comfort from the news.

[Kathy]

Dear Lynda,

So sorry to hear you felt your trip was a waste of time. Sadly, as the trials are still on-going I think your neurologist is fairly accurate is his assessment of the situation. They still don't have the evidence that it is going to be beneficial or whether there are any side effects etc.

Have you seen a physiotherapist to help with your functional level? Or possibly an OT might be able to provide some equipment that might help.

I wish I could have better news for you and hope you get the help you need soon.

Take Care

love

Kathy

[dorothy-thompson]

Dorothy-Thompson

My husband is on the trials and on our last visit to the hospital we asked the question about continuing with the drug after the trials but the neurologist was unable to give a definitive answer. It is just another blow to us all who are trying to get some respite from this disease. It seems to me that everywhere I turn all avenues are closed, it all sounds positive, physiotherapy, occupational therapy but in my experience nothing happens. As I keep on saying and will continue to do so, you are on your own when it comes to tangible help and it is the same for most people in our position. Thank goodness for the PSP association and the nurses.

dorothy-thompson