Quote:
Originally Posted by paula_w
Charlie, a DBS was good for you and I believe you and most of all I am glad for you.
I will always believe that GDNF was my shot for a future, based on how long I've had it. Maybe I'll get DBS and maybe I won't. But negativity must be eliminated. It's hard, but you do it to survive. You do it to stay "on". Having PD is like wearing your emotions on the outside.
They should have fought harder for GDNF.
But I think great strides have been made. And that only comes from being informed.
So, in other words, you cope with it in ways that are good for you. Eliminate what isn't.
paula
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DBS is the ONLY thing that can give one some quality of life NOW. If you go with a good, proven team, the chances of a bad outcome are in the single digits. There are surgeons out there who routinely get excellent results!!'
I have NO tremor, NO dystonia pain, I do have gait and balance problems, something the STN target area doesn't address, and I have speech problems. I probably will, at some point get another DBS to address the gait and balance problems.
My thought is why suffer when their is an answer out there for you.
Chuck, my friend, it breaks my heart to hear of your difficulties. I'd hope you'd consider it for your wife and kids if not yourself. it would be great if you did it for yourself though!!
Paula, you must know that GDNF most-likely will not be available in our life time. We can only get scant solice from the fact that undoubtedly, those Amgen execs will burn in Hell for their actions!! (maybe they'll have PD for all enternity!!)
You are a dear friend and I think the world of you!! (and your partner in crime, Jaye!!)
Their comes a time when getting the stress out of our lives means we are no longer living. We are just existing.
Life CAN be good for someone with advanced PD. get back in the rat race, if only as a spectator.
Charlie