alan says Dr. Chew is his kind of doctor too:>) patti cg On Jul 7, 2009, at 9:34 PM, rayilynlee wrote: > 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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