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Sunday, June 24, 2012

10 & 1/2 months on....

I know I have not blogged for a while, but things have stabilised, and I feel that if I continue, it will be more personal, not DBS based.
HOWEVER, when I opened my blog this morning, I discovered that 35 people on average, from all over The World, check my blog every day. (Thanks to FEEJIT for supplying that information.)

So how am I doing?
Remarkably well.
When I look back over my blog, I am reminded how bad things actually were.

My toes no longer cramp or curl.
I no longer freeze.
Dyskenesia is a thing of the past.
I take a fraction of the meds I did, and if I'm late taking them, it no longer matters.
I am 'even functioning'; I don't experience "off" periods any more.
I sleep at night.
I drive normally; no more lane swapping.

On the other hand;

I have put on weight. (No more 24 hrs dyskenesia workout).
My walking is not great.
Handwriting still sux!

So I am seriously trying to lose weight; 4.6kg lost so far.
I am seeing a physio about my walking.
I love my computer!

I still ride once a week, even though it is winter, thanks to an ever reliable friend, Ingrid who is there bright eyed each Wednesday.
I do pilates once a week.

Overall, DBS has delivered everything I hoped for.
BUT (there's always a but!), I acknowledge that it may not be for everyone, and everyone who has it may not have such great results.

But life is good; I can get on with so much more now.

My next post will be from Brisbane, where I am delivering a summary of this blog (in 10 minutes + 5 for questions), in 3 week's time.
Then I'll report from "The Top End" of Australia, (Darwin and Kakadu), where my husband and I will be holidaying. (Last holiday was in Tasmania, the "Bottom End".)
And soon after, we will be back at our Unity Walk again.
where I hope to top the 100 in 'Karyn's Crowd' who supported me last year.
Please email me if I missed you, and you want to join my team.
Donations can be made at
And somewhere in between, watch out for my review of "A Funny Thing Happened on the way Back to the Future", where I purchased a 'cheap' seat for $200, but Michael J Fox doesn't come to Melbourne often....

So don't give up on me, 
Thanks for your support; it keeps me going,
And stay tuned.

Karyn Spilberg


  1. Thanks Karyn for continuing the blog. Don't stop because your blog has turned into more about you than the DBS. From where I am sitting it is all part of the journey..but, from this point forward your personal journey is the morest important part of the trip. :) You see, ANYONE, can give us the mechanics of DBS. Yes, your experience with the surgery is important but it is the outcome that is the most improtant. How you are doing today, would you do it again, what are the tradeoffs, at what ever level you are willing to share. That information and the info from others like you will help people like me decide if I am going to pursue DBS for myself.
    I am so sad that I will got be attending the Brisbane Conference as planned. I would have loved to listen to your presentation and then give you a big hug following. Don't let me tell you what to do but just remember...speak from the heart and you will be a total success.

    Love you girl. Connie Elliott

  2. Karyn

    Fascinated to read your blog - I had DBS in September 2011. My experiences are very similar to yours - I think the biggest plus is that I have reduced my meds by 50% and this in turn has got rid of the diskynesias. I have had PD for 17 years now and am still working as a computer consultant.

    Like you I am concerned about weight gain - I think it must be the drugs - I am on Stalevo 100mgs and Madopar 62.5mgs 3x per day. I take A Madopar 125mgs CR at night.


    Tony xx

  3. hi the email response to your new blog and replyed to it not realising its a no reply email.....glad you're doing well and i know you are busy...miss chatting with you but im sure we will touch base at some point....if you have a free moment email me....