Hello. I am in the STEPS research study on Spheramine and due for surgery in June. Could you direct me to some pwp who have been through the surgery and wouldn't mind sharing their thoughts and experiences? I apologize in advance for any lapses in protocol - this is high-tech to me and I am more than a little nervous. I finally got the courage to write...(hey this wasn't too scary...)! Thank you . redbirdwillfly

hi and welcome to NeuroTalk.

i made your post into it's own thread. hopefully the membes here will see it. (it was linked to a thread on a different topic. )

let me know if i can be of any help. i'm in texas too.

Look up the name Pegleg and contact Peggy she was with the first group to have tried Speramine and it worked for her although she only had one side done. Nice lady and will be a real help for you.

Thank you for the help! Can you tell I am lost?? Heehee. I am trying to act casual..... ! (Just a bit more study and I will only be lost half the time.) Regarding the STEPS trials, I got in on the tail end of the study and feel blessed, as I know of the six initial recipients and their results. I am starting to feel the jitters over the surgery. Mainly because of staff infections and not due to any lack of faith in the doctors. I await your imput fellow PWP.
redbird

Redbird, Peggy is at the BIO Convention this week, so I don't see her being able to reply until probably next week. The fact that she even went to BIO is amazing to me, but she is one tenacious PWP.

For your reading, until you are able to "talk" with Peg,

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Retinal Cell Implant Clinical Trial - I Had the Surgery
By Peggy Willocks, guest blogger
Why did I do it?
http://myparkinsonsinfo.com/blogs/re...ad_the_surgery

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From the GoTriCities Network: How far for a cure?
http://www.grassrootsconnection.com/..._stem_cell.htm

EXCERPT: "In August 2000, Willocks became one of six people in the world to undergo an experimental treatment for Parkinson’s disease. At Emory University Medical Center in Atlanta, doctors drilled tiny holes in Willocks’ head and inserted spheramine, which consists of normal human cells that provide dopamine attached to microcarriers and is designed to deliver dopamine to the regions of the brain affected by the disease.

“I am convinced that I would not be as functional today if I had not had the surgery,” Willocks said. “The first year results for the group of six showed everyone with a nearly 50 percent improvement over baseline data. After three years, I believe it still runs at 40 percent and, remember, we are dealing with a degenerative illness.

“I went into it saying, ‘If it does nothing but delay progression, then I will consider it successful,’ and it has done that. Phase II is currently under way with plans to recruit 68 candidates for the surgery. Both sides will be done — I only had one side of the brain done — at multi facilities: Emory; Baylor in Texas; Rush [Rush-Presbyterian-St. Luke’s Medical Center] in Chicago; Tampa, Fla. This will be a double-blind controlled design, meaning half of the participants will receive the cells [spheramine] and half will not. Seems a bit unethical to me, but nonetheless it’s what the FDA requires.”

Wow, I cannot wait to read those blogs from Peggy. (pegleg) I know of her from my lurking days, and then of course when the system went down I could not find out much info. on spheramine. I somehow cannot see good solid progress in any other area for our disease. I think I am always in shock that all PWP are not standing in lines miles long. Once I heard of this I knew it was IT for me. I am nervous but know this is the "bandaid" before stem cells revolutionize everything. Well, all my enthusiasm has made me tired! I look forward to talking to anyone about this subject as I approach the surgery date. Best Wishes - redbird

Suggestion: You may be interested in this clinical trial.
http://neurotalk.psychcentral.com/sh...light=CERE-120

Welcome redbird..Peggy had told me that she believes she would not be able to walk today if not for the surgery

Hi Stevem! (I hope I can figure this system out soon.) May I ask, why you are not tooting the spheramine horn? I guess that is the question I would like to ask PWP, ie: If we need dopamine and this gives it....? When we are hungry, we go get food. Just a little baffled. But I have been baffled since 1994! (My first noticable symptom - I fell down all over Italy and Switzerland that year and blamed my shoes.) Thanks for your respnse. redbird(WILL FLY!)

There is a huge amount of support for Spheramine on this board and it is through the efforts of brave people such as yourself that treatments like this will benefit us all.

Good luck.

Neil.