STEPS Research

[redbirdwillfly]

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

[Curious]

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.

[Thelma]

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.

[redbirdwillfly]

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

[Stitcher]

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,

1237

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

1237

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

[redbirdwillfly]

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

[Stitcher]

Suggestion: You may be interested in this clinical trial.
http://neurotalk.psychcentral.com/showthread.php?t=18097&highlight=CERE-120

[stevem53]

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

[redbirdwillfly]

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!)

[aftermathman]

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.

[pegleg]

Hello!
I have finally settled back into my "normal" life and saw that you were looking for some input. Let me give you my "pre-Spheramine" days:

I wore a brace due to terrible dyskinesia.
I could not walk unassisted for 10-20 feet (I most always used a cane or walker)
My "off" time was about 55-60% of my awake time.
My "on" time was functional, but still not very good - with trouble still walking (due to balance problems), rigidity, and bradykinesia.

Today, seven years after unilateral Spheramine (only one side of my brain), I have incredible "on" time - the examining neurologist during my last visit said "I can't tell that you have PD!"
I still have off time (and pretty bad "freezing" occurs at times), but this may happen only 1 or 2 times a day and is much shorter in duration.
My dyskinesia seems to have worsened lately - I added another Comtan to my daily medication regime to try to control the freezing, which may have caused more dyskinesia. But I would rather have dyskinesia than akinesia (no moving).

I am not, nor have I ever been, one to tremor. Just at the onset did I have a slight resting tremor. I have read and heard doctors say that "tremor" means you are not as advanced in the disease process. I dont know how true that is, but I hardly have a tremor at all.

It wasn't difficult for me to choose rather or not to have the surgery (if you read some of the links to articles I wrote in this thread, you will get an idea of my thinking on this). And I guess about the best testimony I can give for Spheramine is this: If I could have the other side of my brain done, I would in a heartbeat. I suppose that will have to wait for phase II results.

Entering a clinical trial, especially one that involves invasive surgery, is a decision only the individual can make, with the support of his/her family and friends. You can choose to deny or ignore your disease - give in to it and just let what will be happen - mange it with treatments, medications and therapies - or fight it. I am doing the last two.

Best to you.
Peggy :)

[redbirdwillfly]

Thank you Peggy! Your experiance and perspective make you a priceless treasure here.

None of us can ever say we know exactly what motivates the other to take any of the many risks that are out there for us in this life, we just know we have got to do it! This particular trial had my name written on it somehow. (And I hope not on the unselected list.)

I face the tired days lately clinging to the knowledge that a bandaid exists. God is good.

We will be there to witness a huge change in medicine once we set free Stem Cell Research. How to help everyone? That is the question.

I am grateful for this board to post these feelings.

I am so tired. More after I get some sleep!

Thankyou pegleg!

redbirdwillfly

[jeanb]

Good luck to you both - one for Spheramine & one for CERE-120. You are brave and your participation in clinical trials benefits us all.

Thank you - any more people considering these trials? (I am not eligible, but I continue to check out the PDTrials website in case a trial opens up that I am eligible participate in. Until then I am in POSTCEP and am being followed in another study for people with neurological diseases.)

best,

[BobT]

Hi im bob 49 diag in 98 and the 65th of 68 patients for spheramine. My surgery was dec 13 2006 My email is ardiejr@aol.com

[jeanb]

Bob T --

Thank you for your trial participation. Good luck. I wish you much success and better health in the years to come!
:hug:

[redbirdwillfly]

Hi im bob 49 diag in 98 and the 65th of 68 patients for spheramine. My surgery was dec 13 2006 My email is ardiejr@aol.com
Thanks for the post Bob!! My surgery is June 13. (Hmmmm...oh, I guess the dates arent unusual,...!) How was the experience and did you go to Emory in Atlanta? Anything you would like me to know about the whole thing? Like, bring plenty of crossword puzzles maybe? :)
I'd be happy to get any info you'd care to pass along.
Best Wishes to You,
Redbird (Yvonne)

[BobT]

Yes I was at Emory and the staff was great. Dr Gross and Sally were wonderful. All transport connections great. i arrived Monday, checked in and relaxed. Tuesday abut 2.5 hours of paperwork and prelims. Wed 6am at the hospital. Shuttle doesnt run that early. Set up cab. Surgery was scheduled for 8. By 630 I was all ready and asleep. I react well to anesthesia. I awoke at 320 being pushed into recovery. My immediate comment was I must be alive cause all these nurses wouldnt be in hell. I was able to eat fairly soon. My recovery was good but it took awhile to get a room. Shoud he get his MRI now or later took awhile to decide. It happened at 8 pm. Usually I sleep though them but after being asleep all day i couldnt. It was the worst part of the experience. I cant tell you how many times i almost pushed the panic button cause I thought they forgot me. They didnt.. Late that eve I was able to get up and walk to bathroom. The following eve at 6 I was released. I shuttled back to hotel then went for 2 mile walk. 7 days later home to boston.
Okay remember cab day of surgery
Try like hell to sleep thru MRI
If you want to get snacks or soda for the room get a cab no easy walk. Theres a great mall about $25 cab ride. Get some local info before going to plan a few small activites
Pain virtually none Uncomfortable incision a few days. Wipe a few time a day with Hydroggen Peroxide and be amazed its healing. Total time lost from work 2 weeks
Im a retail store manager. stitches out on the day leaving emory Healed in about 3 weeks. Get your hair cut short now and get used to a new look then when dr gross does his work there less shock value
I am excited for you. I'll not wish you luck because that youve already received. ill also say airfare isnt bad right now and my father sent my daughters to atanta post surgery and they stayed in my room. who said men dont cry. Please ask anything you wish
Bob

[redbirdwillfly]

Your letter was excellent!
I know what you mean about the MRI because my father had panic attacks whenever he got an MRI - for some reason all I can do is sleep during one. I get terribly annoyed when they wake me up to tell me not to move.
God bless you and your girls for making this all so positive. (I hope to meet you one day when we are busy teaching dance lessons! heehee!)
Sincerely, redbirdwillfly