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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