Ray

Dad is 71 this year. 

Peter 

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of rayilynlee
Sent: Friday, 3 October 2008 2:54 PM
To: [log in to unmask]
Subject: Re: DBS/Peter's Dad

Absolutely, Peter.  No tremors for the past 5 years.  However, as you
know, we are all different.  How old is Dad?
Ray
Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation [log in to unmask]
----- Original Message -----
From: "Swinburn, Peter" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, October 01, 2008 11:03 PM
Subject: Re: Newbies/Exercise


> Ray,
>
> Thanks again for this information. Do you think DBS is worth the
effort?
> I would like to explore it for my father.
>
> Regards
>
> Peter
>
> -----Original Message-----
> From: Parkinson's Information Exchange Network 
> [mailto:[log in to unmask]] On Behalf Of rayilynlee
> Sent: Thursday, 2 October 2008 5:57 AM
> To: [log in to unmask]
> Subject: Newbies/Exercise
>
> I am passing on my response to Nihal's email because it  contains a 
> call for early and sustained exercise:
> Ray
>
> Dear Nihal
>
> Thank you for emailing me and  putting such confidence in me.  I must 
> tell you I did not write the exercise article, although I agree with
it.
> I labeled it "Source unknown" because I got it from a blog with no 
> author.
>
> I have had PD 12 years now, was diagnosed at age 60.  In those first 
> early years I did well, treadmilling an hour a day.  I liked to  
> listen to Dixieland Jazz music when I walked, it helped pass the time.
> Although I tried Sinemet (which worked only once) and other PD meds, 
> they didn't help so I don't take any PD meds.
>
> In 1997 I went to Australia-New Zealand without a cane and walked from

> the hotel to the  Sydney Opera House.  In 1999 my niece and I went to 
> Egypt.
> Although I had a cane I zipped around the tombs and pyramids.  I am a 
> retired history teacher who always loved to travel.  If I could 
> improve to my 1999 status I would go see all the great people I have
met online.
> I cannot travel now.
>
> In summer of 2003 I had two DBS brain surgeries which control my 
> tremors.
> In April 2008  I fell on my tailbone and cannot treadmill or walk in 
> my swimming pool as it makes my back worse.  I can't even stand for a 
> few minutes to use the 2 putting greens in my backyard.
>
> MY ADVICE TO ALL NEWLY DIAGNOSED PWP:  IF YOU CAN,  KEEP UP THAT 
> INITIAL EXERCISE PROGRAM AND BY ALL MEANS DON'T FALL - YOU CAN REALLY 
> HURT YOURSELF.
>
> Sometime around 2001 I got an electric "Jazzy" wheelchair because my 
> doc was afraid I would fall.  This may have been a mistake as I can 
> barely walk now.
>
> Nihal, one of the many nasty things about PD  is the "unknowns" we
face.
>
> Every one of us is different with respect to reaction to meds and 
> progress of the disease.  Although that is a negative, it may also be 
> a positive.
> For example, just because I am losing my voice, it doesn't  mean you 
> will.
> I do think we have a window of opportunity at the beginning to use 
> exercise as much as we can.  I wish I had maintained it no matter
what.
> So be good to yourself.  Select what you "like" best and what you 
> think you can stick to.  It is good you have family support.
>
> I just ask myself, what can I still do?  One thing is posting  PD info

> with Diane Wyshak's help.  This was not the retirement I had planned 
> on, but I do have enough to do.
>
> You are not alone and I'm sure you will make many online friends.  I 
> will still hold onto the hope I will meet you someday in Sri Lanka.
> Thank you for your kind invitation.  In the meantime, don't hesitate 
> to contact me and keep the List up to date on how you are doing.
>
> Ray
>
> Rayilyn Brown
> Director AZNPF
> Arizona Chapter National Parkinson Foundation [log in to unmask]
>
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