I KNOW!!!: Dear World, I certainly... - PSP Association

PSP Association
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I KNOW!!!

StayAtHomeDaughter
StayAtHomeDaughter

Dear World,

I certainly understand there is no cure for neurodegenerative diseases. I also understand the philosophy of evidence based treatments.

But someone has to be the evidence. JUST ONCE, I would love someone to say, "Don't sue me if it doesn't work, but ______________ is very interesting to me."

I know. That's not gonna happen.

But a girl can wish.

11 Replies
oldestnewest

If there was a fairygodmother that could turn a human into a mouse and back again that could possibly be a cure............... till then we can only live in hope.

Thank you. I think that is a Fabulous response. HOPE is probably the best non-supplement and non-pharma that exists.

You have not posted for awhile...how are U doing?

Los Angeles, CA, USA

Botox injections on Tuesday ......................

Pavaga
Pavaga
in reply to Bargiepat

I miss your wonderful trip pictures!

daddyt
daddyt
in reply to Bargiepat

So good to hear from you Pat - stay strong.

Tim x

I wish someone (official, academic..) would experiment with restricting ALL sugar from a patient's diet - I mean fruit, sugary veg, dairy - all of it - and see what happened......There IS a thought out there, that sugar may fuel the tau replication in the brain...but I haven't heard about any studies on it....

Anne G.

Hi, I think someone with PSP should try Dale Bredesen's programme which he recommends in his book "The End of Alzheimers". It advocates dropping alcohol, sugar and gluten amongst other major lifestyle changes for Alzheimer patients. His apparent success with Alzheimers makes me wonder if his suggestions may work for PSP which also has tau at its root cause? My father who is about to turn 80 and has PSP does not want to part with ice cream and chocolates but someone younger may want to try this out?

Hi,

There are people who report success with Tasigna / Nilotinib, ayurdevic medicine (?) etc - you can search the site here. But I feel that the quality of life is poor for our sufferers and getting poorer by the day. It would not be fair to deprive them of the few pleasures of life they have (wine, the occasional ciggy, chocolate...fill in for yourself) , for something that in reality is probably not going to work or at best is going to drag out this horrible illness for a bit longer. Hope I am proved wrong one day!

Richard x

I want to believe that research is on the cusp of a treatment breakthrough... a cure would be better. Until that time - HOPE, because it matters.

Tim

Thank you Richard for permitting us some pleasures as we slog our way with this disease called Psp. You get it!

We hoped our way for a long time with CoQ10. Maybe it worked. For a while. Who can say?

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