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Dr. Chew Thank you for reminding me of an important fact: We don't need everybody to change the world, just some of us. I'll try to remember that when I get discouraged. Another fact: Hearing from you also reminds me that, indeed, we are one world. Computers will unite the world. Diane appreciates your support. I don't know how she does it. I had ovarian cancer 30 years ago, but NOT with PD too!!!! Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "chew nee kong" <[log in to unmask]> Sent: Thursday, July 02, 2009 11:48 PM To: <[log in to unmask]> Subject: Re: credit for the List > Dear Ray > > I have just read the article on Mucuna pruriens. It is a very interesting > article. Some Malaysian Parkinson's patients of ethnic Indian origin have > gone to India to receive this treatment. They have reported some > improvement in their symptoms. > > Please send my best regards to Diane. Tell her that we need more people > with caring hearts like her (and you as well Ray!). Actually, we need only > a few people to bring a big difference to the whole world. > > Dr Chew Nee Kong, Kuala Lumpur, Malaysia. > >> Date: Mon, 29 Jun 2009 21:31:41 -0700 >> From: [log in to unmask] >> Subject: credit for the List >> To: [log in to unmask] >> >> Dr. Chew >> >> I always feel good when someone appreciates the info that is shared on >> this >> List. I need to point out that Diane Wyshak of Massachusetts deserves >> most >> of the credit. She is my major source of information. She has cancer >> as >> well as PD and when I am not posting so much it is usually because she >> also >> fighting these diseases. Right now she is on a very toxic chemo regime >> and >> also suffered a fall and injured her knee. >> >> She is truly the unsung heroine of our efforts. I'm forwarding your >> remarks >> to her. I'm sure they will cheer her up. >> >> Ray >> >> Rayilyn Brown >> Director AZNPF >> Arizona Chapter National Parkinson Foundation >> [log in to unmask] >> >> -------------------------------------------------- >> From: "chew nee kong" <[log in to unmask]> >> Sent: Sunday, June 28, 2009 4:10 AM >> To: <[log in to unmask]> >> Subject: Re: Unproven stem cell treatment >> >> > Dear Ray / Charles / everyone >> > >> > Thanks a lot for your opinion and advice. I will send a letter to the >> > local newspaper to discuss this matter. >> > >> > I have been reading your articles and have learned a lot from them. The >> > main problem about Parkinson's care in any part of the world >> > (especially >> > my country) is lack of scientifically correct information. >> > >> > I'd like to thank all of you for creating this wonderful parkinson's >> > network - I will inform the Malaysian Parkinson's community about >> > joining >> > this network. >> > >> > It is touching to know that some of the most wonderful things that >> > Parkinson's patients receive are coming from the fellow patients. Even >> > I, >> > as a doctor, have a lot to learn from the Parkinson's patients. >> > >> > Thank you again. >> > >> > Dr Chew, Kuala Lumpur. >> > >> >> Date: Sat, 27 Jun 2009 19:43:41 -0700 >> >> From: [log in to unmask] >> >> Subject: Re: Unproven stem cell treatment >> >> To: [log in to unmask] >> >> >> >> Dr.. Kong >> >> >> >> It sounds to me like you are doing a good job of informing patients >> >> and I >> >> like your idea of getting something in the local paper about it. >> >> >> >> People in the US have gone to China for PD stem cell treatment and it >> >> is >> >> pretty much an individual decision. The government doesn't do >> >> anything, >> >> except if certain proposed laws had been passed, patients could have >> >> been >> >> jailed and fined if they got embryronic stem cell treatments somewhere >> >> else >> >> and came back to the US. >> >> >> >> Jim Finn had fetal pig cell brain implants (a treatment most of us >> >> would >> >> decline) in the US and it seems to have worked well for him. I think >> >> people will still try things even if they know it is unproven and they >> >> can >> >> afford it. PD is an awful disease and I felt that DBS might kill me >> >> but I >> >> didn't care. No treatment today guarantees a good outcome. >> >> >> >> I think the best we can do is to inform people so they can make >> >> educated >> >> choices and it seems you are doing that. >> >> >> >> Ray >> >> >> >> Rayilyn Brown >> >> Director AZNPF >> >> Arizona Chapter National Parkinson Foundation >> >> [log in to unmask] >> >> >> >> -------------------------------------------------- >> >> From: "chew nee kong" <[log in to unmask]> >> >> Sent: Saturday, June 27, 2009 2:37 AM >> >> To: <[log in to unmask]> >> >> Subject: Unproven stem cell treatment >> >> >> >> > Dear Ray and everyone >> >> > >> >> > Thanks for all the wonderful information that you have provided >> >> > through >> >> > your parkinson's network. >> >> > >> >> > I'd like to share my experience with you and appreciate if you can >> >> > give >> >> > your comments. Two weeks ago, I discovered that one of my >> >> > Parkinson's >> >> > patients had undergone a "stem cell treatment" at Kuala Lumpur. This >> >> > patient's daughter heard about the "stem cell centre" from her >> >> > friends. >> >> > The patient spent RM53000 (which is a huge sum of money) for a >> >> > course >> >> > of >> >> > "stem cell" injections (administered into the shoulder muscles). >> >> > >> >> > I explained to the patient that currently stem cell treatment for >> >> > Parkinson's has not been shown to be consistently beneficial for >> >> > parkinson's patients. I also mentioned to her the guideline which >> >> > was >> >> > issued by the International Society of Stem Cell Research in 2008, >> >> > which >> >> > aimed to educate the public on the possibility of unproven stem cell >> >> > treatment. >> >> > >> >> > Recently, another stem cell company approached me and claimed that >> >> > they >> >> > had successful stem cell treatment for parkinson's - direct >> >> > injection >> >> > of >> >> > stem cells into the brain. >> >> > >> >> > In my country, people are so gullible and accept "treatments" which >> >> > may >> >> > be >> >> > unproven, without consulting the relevant specialists? Does this >> >> > happen >> >> > in >> >> > the US? What has the US government done to prevent this problem? >> >> > >> >> > I am considering bringing up this issue in the local newspaper to >> >> > alert >> >> > the general public about such unproven treatment. Otherwise, more >> >> > parkinson's patients will be victimized. >> >> > >> >> > I'd appreciate your advice. >> >> > >> >> > Dr Chew Nee Kong, Kuala Lumpur. >> >> > >> >> > _________________________________________________________________ >> >> > What can you do with the new Windows Live? Find out >> >> > http://www.microsoft.com/windows/windowslive/default.aspx >> >> > ---------------------------------------------------------------------- >> >> > To sign-off Parkinsn send a message to: >> >> > mailto:[log in to unmask] >> >> > In the body of the message put: signoff parkinsn >> >> >> >> ---------------------------------------------------------------------- >> >> To sign-off Parkinsn send a message to: >> >> mailto:[log in to unmask] >> >> In the body of the message put: signoff parkinsn >> > >> > _________________________________________________________________ >> > Join the Fantasy Football club and win cash prizes here! >> > http://fantasyfootball.malaysia.msn.com >> > ---------------------------------------------------------------------- >> > To sign-off Parkinsn send a message to: >> > mailto:[log in to unmask] >> > In the body of the message put: signoff parkinsn >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: >> mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn > > _________________________________________________________________ > What can you do with the new Windows Live? 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