Re: New Member

[rayilynlee <rayilynlee@xxxxxxx>]

Sandra

Welcome to our group.   I am so sorry to hear about the stroke you suffered 
due to DBS.  I had 2 DBSs in 2003 (one was a do over) and it controls my 
tremors, no meds, but my symptoms have remained pretty much the same since 
then (except for voice).  Am just recovering from a loss of balance fall on 
my tail bone -  no bones broken, but very painful.

I love Sydney.

Ray

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
rbrown@xxxxxxxxx
----- Original Message ----- 
From: "MyFirstname Mylastname" <sandra.way@xxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Sunday, May 04, 2008 1:58 AM
Subject: New Member


> -
>
> Hello, I am a new member from Sydney Australia. I only found out about the 
> site from the book "When Parkinson's Strikes Early".
>
> I was diagnosed in 2002 at age 35. My husband and I have 2 children. In 
> 2006 I had deep brain stimulation surgery but it was unsuccessful and I 
> suffered a stroke on the left side of my body.
>
> I have changed neurologists again and have finally found someone who wants 
> to reduce my medication! I actually feel better with fewer side effects 
> and sleep better.
> He told me about "dopamine dysregulation syndrome" which I had not heard 
> of before.
>
> I have been undergoing rehab and started with a personal trainer at the 
> gym last February to strengthen the muscles on my left side of the body. I 
> think the weight training has helped and the reduction in medication has 
> almost eliminated my dyskinesias. I joined the gym after my diagnosis and 
> attend Pilates classes regularly which help me to maintain my muscle 
> flexibility and reduce stiffness (lots of stretches and can be adapted for 
> different fitness levels).
>
> I still have limited use of my left hand but I can walk independently and 
> can drive with a spinner-knob.
>
> I have gone through severe depression and a lot of personal trauma but I 
> have been blessed with a loving family a great Parkinson's support group, 
> supportive church community , some very supportive health professionals 
> and a great driving instructor who have got me through the really dark 
> times.
>
> So remember, never lose hope, there are lots of wonderful people out there 
> who will help you - you just have to let them.
>
> I am always surprised at the kindness of complete strangers. There is a 
> lot of travelling and a lot of things to be done so I want to do as much 
> as I can while I can.  For those young-onset people who don't attend 
> support group meetings - you should give it a go. They are really great 
> and you can provide support to someone else too.
>
>
> Thanks for letting me join your community.
>
> Sandra Way
>
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