adult stem cell treatment in 2010

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adult stem cell treatment in 2010

Postby john » Tue Aug 17, 2010 7:37 am

Hi My name is john i`m 60 years old, i live in the uk & have 3 weeks ago been diagnosed with
with PSP following a diagnosis of PD 3 years ago, i am asking if anyone has had any success with stem cell treatment anywhere if you have please contact me with any details that may help of where one can get the treatment & the cost 7 whether the clinic has any results from clinical trials that can stand up to scrutiny
many thanks
i `ll appreciate any knowledge anyone can impart
regards
john meader
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Postby Moderator » Thu Sep 30, 2010 6:07 pm

John

I regret you are struggling with this disease. I interpret the lack of response here as meaning none of us knows of any successful stem cell treatment of PSP. Research is still in an early stage re. generation of new brain cells with stem cell therapy.

Meanwhile, we would invite you or your caregiver or loved one to take part in the forum to get answers and advice on practical issues of ongoing care.

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Re: adult stem cell treatment in 2010

Postby Lorainemarie » Fri Jan 13, 2012 11:45 am

A number of ALS patients tried stem cell therapy in China a few years ago. It was a very difficult procedure at great personal expense and did not improve the disease. It was very difficult for people to admit that it did not help after they had spent so much money but in the end many of them published blogs that tried to discourage others from taking that path. I understand the clinic in China has expanded to include other illnesses besides ALS. I would avoid experimental stem cell treatment in China.
-Loraine
Image
Mom: Marg-PSP-dx Aug'03-Died May'07 age 81.
Dad: Joe-Primary Progressive Aphasia with Frontal Temporal Dementia-dx Mar'06-Died Nov'06 age 84.
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Re: adult stem cell treatment in 2010

Postby eplowman » Fri Jan 13, 2012 9:11 pm

John,

I, too, wish to express regret that you are struggling with PSP. And I am sorry that you received no responses to your request before now. I hope you are still able to access the forum.

Assuming you are, allow me to urge you to take Loraine's post seriously, along with these points below:

1. Be VERY cautious. The Internet is jammed with scam artists, many posing as doctors or otherwise sporting false medical or scientific credentials, who are peddling false claims and substances that can be dangerous and cause great harm or death -- after bilking huge sums of money from the vulnerable victims.

2. Stem cell therapies that are safe and effective to replace damaged or destroyed brain cells are still years away, virtually all legitimate American experts in stem cell research agree. As yet, there have been =no= clinical trials on humans with neurological diseases like PSP, ALS (Lou Gherig's), Multiple Sclerosis, etc. etc.

3. Pay no heed to anyone who advises you to seek treatment in China or other "stem cell tourism destinations" around the world. There have been no verifiable stem cell cures of the neuro diseases named above ANYWHERE in the world!

I trust family members are standing with you in this battle with PSP, have informed themselves about PSP, are surrounding you with love and encouragement, and making sure you get the assistance, support, and proper care you need.

Please keep us updated as you are able, and let us know if other questions arise.

Blessings to you and yours,

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: adult stem cell treatment in 2010

Postby 104fm » Mon Jan 16, 2012 12:11 pm

Thanks Ed,
Your words of caution are more than well founded. Sadly, there has always been those willing to use someone's desire for a cure as a tool to rob them of their savings. In days gone by, it was who we now refer to as the snake oil salesmen. In our time, these amoral individuals now sell their bottles of false hope and "treatments" through professional looking websites with misleading and false claims, or touting reports of studies (which they fail to mention were never done or were intentionally manipulated) that "prove" their products effectiveness. I've also heard of advertisements in the backs of magazines touting medical tours like you mention which not surprisingly are to counties with little or no regulations that leave people no recourse when they finally realize they've been scammed.

The predators who sell these false treatments count on people thinking they have little to lose and everything to gain. After all, of what value is their money in comparison to the potential cure of themselves or their spouse? They count on peoples overwhelming desire to believe their fantastic claims to outweigh their usual healthy skepticism.

The idea that there is nothing to lose, it's only money, could not be more false. In my work with Hospice, I was told stories by more than a few families about entire savings being wasted on unproven treatments. What saddened me beyond words was that in most of those situations, the patient ended up having to go into a nursing home on public assistance to live out their last months even though their desire was to be home. Had the money that was wasted on useless treatments been available, the person could have stayed at home with private help surrounded by family.

Ed, as always, thank you for the words of genuine wisdom.

Bill
As always, if you or anyone has any questions about Hospice, please feel free to contact me privately or within the group.
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