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.
>> >> >
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