Mike is a good representation of where several posters are and many more readers. He is never comfortable, he gets dyskinesia all of the time - first dose. He can't walk half the time, he can't do his other interests, he has a wife willing to do it with him including long rides with something new in your brain.

He had a very dangerous fall.

God Bless your wife. YOu have many ducks in row, Mike, and you feel like crap. You've got to try DBS for anything to get better.

A group of us are still working on Amgen to at least grant compassionate use of GDNF and continue the pump infused trials; we will run it into the ground and more.

But in the meantime we are getting to the same place you are; and we don't know how long we can continue on at this physical pace,

So you get one and buy yourself time before they get something neuro-protective. Other than GDNF, we have Neurturin...Ceregene starting phase II with many unknowns, hopefully the GDNF trials have taught them some pitfalls to avoid.

But treatment is years away. And wonderful news for Young Onset, who are just starting out with the diagnosis. Scary but very hopeful
We have to get by in the meantime. THis is what we wanted GDNF for and still hold Amgen accountable due to ineptness and miscalculated business interests

I notice how much of a recluse I've become and and relate better to my 3 yr old grandson than anyone. Too many obstacles to overcome to get anywhere.

There is spheramine, phaseII bilateral, very promising but moving at a snail's pace;

I believe that I need to make a decision about DBS if GDNF does not make a reappearance. If I were younger. I'd still be hoping for growth factors and gene therapies but who knows when.

Well thank you for letting me use you as an example, it's something we talk about but avoid and still are afraid.

Charlie, did you hear that Patti H; pwnkle's buddy in Kentucky, finally had one? Doing fine, just had it a couple weeks ago, maybe not even that long yet.

Paula

Edited to add I just read Lee, and I do agree. But I just breezed over that other thread
as I usually do - I'm not trying to avoid it this time. Your post is totally reasonable.