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.
>>> >> >> >
>>> >> >> >  
>>> _________________________________________________________________
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