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Dear Ray and Diane A few years ago, I was attending to a Parkinson's patient in my clinic. I found out that this gentleman was not doing very much at home - he did not seem to be taking his initiative. So i advised him to get involved in some outdoor activities e.g. shopping, morning exercise, etc. After spending ten minutes on telling him what he should do at home, he replied, "But doctor, it is easy for you to tell me what to do, because you are not a Parkinson's patient." I was left speechless. The moral of the story is that it is the Parkinson's patients who understand each other the most, and certainly not even the doctors. The Parkinson's patients should speak up and reach out to each other, regardless of which part of the world they come from - which are exactly what you and Diane have been doing. I am sure that there are many people in the world (including me) who appreciate what you are doing. As far as Parkinson's care in my country is concerned, we have a very, very long way to go. Parkinson's is not a priority illness in Malaysia. I have been to Queen Square, London back in 2003. I must say that in the UK, US and Canada, the quality of Parkinson's care is much better than what we have in Asia. But one thing that I realize - all the Parkinson's patients in this world belong to the same big family. Dr Chew, Kuala Lumpur. > Date: Sat, 4 Jul 2009 12:35:10 -0700 > From: [log in to unmask] > Subject: changing the world/Dr. Chew > To: [log in to unmask] > > 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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