Decided that this was too personal of an opinion and perhaps upsetting to others.

Paula

I sense frustration Gee really. I thought this thread was on how to improve the consent form and this womans plight was introduced as the vehicle.
A few problems are that all the issues got put in one bucket. Injury reporting, Immediate care, long term care, financial responsibiilty all must be treated seperately. While some of the results seemed less than steller I saw far more good than bad .

Just a reminder those results were postedi in response to someone slamming the study. My heart to goes to jlangulle, but her case was described in the post. As far as I can see she just raised alot of questions for me. We joked as to whether I read the consent form

jllanuille said"The records attribute her decline and hallucinations as certainly due to the procedure and probably due to the spheramine"
The study said " The causal relationship of this deterioration with Spheramine treatment is unclear."
Two completely different diagnoses
Also before jumping to conclusions I read of moms condition but nothimg os the injuy notifiction process and their response.

If I appear to sound negative I am clearly a flag waver for Titan. I just want it to fail or succeed on its merits not on whos louder

My very first post SPHERAMINE "I BELIEVE"
and today more than ever
Bob

I need to not speak for Jllanguille. So I'm not - just for myself. I'm talking about telling your true stories. All of the areas in a list of rights and responsibilities will be categorized into sections. And talking about your experiences confirms the issues needed to be included. It's that simple. We don't have anything hidden up our sleeves. We are working on the same thing so many of us are lacking in this process and that is trust.

Sleepy,
Paula

After a night's sleep and an inspiring sunrise, I reread the thread and want to make sure it's understood that I want Spheramine to work. I knew Peg before she got Spheramine - she used a walker. I don't think I've seen her use it since and that was 7 years ago.

But if a life is destroyed, and that is the risk participants actually take, financial burdens or even ruin should not follow. This is asking too much, and will not attract more participants.

We are all on the same side...and wish there didn't have to be sides.

Bob you can believe in spheramine all you want and I hope you are right. But as one person wondered to me yesterday - is capitalism the way to go where drug companies are involved? That's a sobering thought.

Paula

I too want Spheramine to work. It is preferable to me that my mother's sacrifice be for something that was of benefit to mankind.

I do want people to really understand the risks involved in research. I think my mother thought the worst thing that could happen was death. I think many would consider death preferable to spending the last years of your life strapped in a wheelchair, in a diaper, hallucinating horribly in the dementia ward while cognizant of your situation.

I think informed consents should clearly convey the risks, sponsors should honor their commitments to provide care, and there should be no financial burden on the patient or their family to participate in research.

Not enough for me to push an icon and thanks pop up.

So this thanks is directed at you lady and for the help you are giving that goes beyond any thanks.

Your mother must be proud that you have taken her heartache and turned itaround to help others which was for her a part I assume of her particiation in the first place.

Children and in particular daughters don't stray too far from the Mothers who have raised them in love.

Thank you again for want of a better word.

Come in come in...what are you thinking? Nobody wants to bite although we are pretty good at verbal debate and self defense,but if you can't take a knock, you shouldn't enter in I guess..Jaye, what's the subject? Did you say something about a timer...hee hee.

Bob, I think we all would like to know more about where you are in all this. Many here have it too...advanced. If there is to be anything currently possible emerging neuroregeneratively or even neuro protectively, we haven't found it yet.

We have two choices....we each are given all of the facts and choose whether or not to take the risk

We can be lab rats

We can not participate for many reasons

Make that 3 choices....my math ..

paula

I'm just the son of a navy man, with 5 sisters, 2 brothers , 4 daughters and a foster son, i have 36 immediate family members and weve been traced back to 1600s with no PD i'm a manager for a major retailer. I live on Cape Cod, vote republican, think Gods greatest gift to man was women and believe life is what you make of it. i was diagnosed in 98 and im 50 in a few months. I believe if your waiting for life to get better, get a blanket cause your done. Wait for nothing. I seek nothing but good and realize some cant, some shouldnt and some wont. Its not my place to judge. I joined this study because theres no magic pill. I realized whatever the solution surgery was invovled. so for me that eliminated my choice. There was none. I'm convinced I have placebo but then again i know Ive got spheramine. I believe in corporate america because people who take risks deserve it when they hit the motherload. I also believe the same for people on the team, the players for whom the team invested. Thats us. Its a different risk. Whetheryou risk your existence or risk happiness by dedicating your time at the risk of family we need to share in the motherload of protection, prevention and cure. God forbid the drug company post profits. Well without Bayer Titan goes bye and with it my light. So heres to quarterly earnings. i have no drug company affiliation, own no stock. MY immediate goal in life is to WALK 4 daughters own the aisle. At 16. 19, 21 and 22 there isnt even a wedding in sight. Did I miss anything?
Bob

Thanks Bob for sharing your reality check. I could have almost written somee of thhat myself. Those who sit and wait often end up waiting (how's that for providence?)

Peg