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Dr. Chew I think your advice is very good, especially the exercise. What happens with PD is that everything becomes super-hard to do. We are caught in a catch-22 situation: we know we are going to lose, but need more than ever to be active. Theracycle has a power-operated stationary bike for disabled people because exercise is ten times as difficult for us as it is for well people. I avoid shopping now, alone, because my balance is so poor it is really dangerous. I have to force myself to drive short distances to fast food places in the neighborhood and I don't go out for anything much anymore. I can barely walk with a walker and have to lift it out of my car. Arizona heat in the summer is a bad thing too. However, that heat warms my pool which I walk in. I haven't given up on the exercise because I just can't know how long I will live, and I want to feel as good as I can. What I have found is everyone has a little different attitude about having PD. My attitude is I want to do all that I can for as long as I can. I am NOT one of those people who feel it is a blessing or a gift. Correspondingly, they seem to like different kinds of doctors. I think you are my kind of doctor. You are kind and you listen. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "chew nee kong" <[log in to unmask]> Sent: Sunday, July 05, 2009 7:01 PM To: <[log in to unmask]> Subject: Re: changing the world/Dr. Chew > 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? 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