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Friday, December 14, 2012

10 Years Since Diagnosis, 16 months since DBS

If this is your first time visiting this blog because you want to know about my DBS journey, please go right down to the first blog (Backpedalling), and read from there up...that's where all the interesting stuff is!
I often receive emails from people contemplating DBS, who tell me how my blog has helped them in their decision to go ahead with their surgery. These emails keep me blogging; I feel that I have covered the before/during/after period, but will update from time to time.
PLEASE email me with any feedback/questions; I will reply promptly.

As my 55th birthday passes, I cannot ignore  the fact that it's exactly 10 years since I was diagnosed.

As mentioned in earlier posts, I am one of the rare people who noticed that something was wrong, and was diagnosed the very next day. It was just before my 44th birthday, and as my father had Parkinson's,       I was no stranger to it.

Did I fall apart? Not a all. Even though I didn't see it coming, I am an optomist, and set about to turn my 'affliction' into a positive situation.

After being superannuated out of the Education Department, I set off overseas to attend various Parkinson's Conferences in The USA, including NPF Conferences in Minnesota and Reston, and The World Congress in 2006 in Washington DC. I attended The Parkinson's Unity Walk in 2007, where I was nearly crushed while lining up for Michael J Fox's autograph. (I DID get it).
I travelled around America, often alone, 6 times, meeting people I had met on the internet in places such as Pretoria Illinois, Canton Ohio and Savannah Georgia.

This year I attended the Parkinson's Australia National Conference in Brisbane, which was excellent.

Other trips took me to Poland (tracing my father's roots), Israel, Jordan (Petra), England, Scotland, Wales, Paris, Rome, Venice, Amsterdam, Alaska, Canada, Thailand, Hong Kong Vietnam, Cambodia, Vanuatu, New Zealand and of course to far flung places in Australia such as Broome, Tasmania and Kakadu.

So how am I 'travelling' 10 years on? Though I cannot envisage myself shlepping 2 suitcases alone in and out of airports, I am still travelling. I am fortunate to have a wonderful, supportive husband to accompany me, and a big trip is planned to Europe and a Baltic Cruise to Russia in 2013. Concessions are made; This will be our 4th cruise; we find it a great way to get a taste of places. We made it to Cinque Terra, Italy on cruise 2 years ago, incorporating the Amalfi  Coast was scrapped this time, as it has been deemed too hard. Compromises will be made, with coffee breaks when I get tired, or me going to back to the hotel whilst my husband seeks out galleries and what he likes to do. Many 'Parkies" like tours such as Trafalgar, where everything is organised, from meals to luggage. (Watch you don't trip over that luggage!)
I will be taking my 2 hiking sticks for rugged walks in the countryside.  One sees lots of people using them, and they create a feeling of steadiness, like 'holding onto a banister'.

End of the Vietnam Ride
One of the highlights of the past 10 years has been The Pedalling for Parkinson's Vietnam Challenge that I did in 2009. It was organised by Parkinson's Victoria, and took 15 of us, (3 with Parkinson's) on a ride around Vietnam. As I had not been on a bicycle for many years, I had to train in order to keep up, and raise $6,000, both of which were really a challenge! Would I do it now?  Knowing now what I was in for, most probably not, but I have kept up the bike riding, thanks to my good friend Ingrid, who meets me at 8am every Wednesday to ride along the beach (bike track only), to Port Melbourne or to The City. Summer or Winter, we ride, with windy days being our only obstacle.

Another achievement that I am proud of, is my formation of Y@P - Young at Park.
I founded this group for Young Onset People with Parkinsons and their partners here in Melbourne, because I felt that there was a need for PLWP who wanted to talk to others and compare symptoms, medication, etc, and just to know that they are not alone. We meet every 2 months or so at a pub, often with a guest speaker. There are over 170 on my books, though only about 35 turn up each time.
We have a website; (under maintenance at the moment), and a Facebook page, Y@P, which is open to all, posts relating to Parkinson's are welcome.

And that brings me to the other major event in the last 10 years; DBS.
How am I compared to 10 years ago?
As everyone with Parkinson's knows, everyone is different, and everyone progresses at a different pace and reacts differently to medication.
I am fortunate to have a slow progression as far as my Parkinson's goes. It has never hindered me from doing most things. Maybe slowed me down, but not stopped me.
10 years ago, I could not foresee how I would be now.
The first 5 years were fine, but then the medication ceased to work as well, stiffness and dyskinesia set in and began to interfere with my life.
DBS has freed me of these symptoms, and given me back my independence. I take far less drugs than before.
DBS may not be a cure, but at this time, it's the best that was on offer, and who knows how long we have on this Earth? I believe in grabbing every opportunity possible. DBS is no longer an experimental procedure. Scary as it sounds, it works.

Where to from here?
Let's just hope that I'm still as active in 10 year's time. But as middle age sets in, it often becomes difficult to distinguish between it and Parkinson's. Every week I seem to hear about someone else's illness. As someone once said to me, "If you are going to have an illness, Parkinson's is the one to have." You may not agree, but my philosophy is; There's always someone worse off than you.
On the Bright Rail Trail Dec 2012

I hope to work with Parkinson's Victoria to set up a DBS Support Group, which I feel there is a growing need for.
I shall continue to arrange Y@P meetings, but am always looking out for someone to hand the reigns to.
I will continue to be an Ambassador for Parkinson's Victoria, talking to any group who wants to hear my story.
I shall continue to fund raise for a cure, and participate in our Unity Walk held every August here in Melbourne.
I shall continue to take part in clinical trials and enhancing programs (such as Essence) where possible.

The real secret, you see, is to remain active, in mind and body, keep positive, and try not to let this 'disease' get the better of you. In saying that, I recognise that it is not so easy for many, but this is my story, and until Parkinson's robs me of my facilities, I will continue to carry on living life to the full, and helping others.


  1. Keep on keeping on! Now that my brain is electrified, too (by DBS), I have big plans for my future, too. Who knows? Maybe a trip to Australia?

  2. good...interesting and informative....don't like being #2 on comment list but as long as bev is #1 that's ok by me....

  3. I'm in awe of your strength, perseverance and optimistic outlook on life Karen. Great to read this update of your story. I look forward to reading positive progress reports in 10 years, then 10 years on and on and on! You are an inspiration to many - not just those with Parkinsons!

  4. Karyn
    I always wanted to ask you how the DBS surgery changed your life and now you answered my question. Your formula for happiness in life may seem so obvious, but so many people in our 'me' oriented culture forget the obvious.
    May you continue to go from strength to strength.
    Leah Adler

  5. Hi !!!
    I want to say thanks for your blog!!!!!!!!!
    Waiting for scheduling for DBS , they say in the next month or so .

    1. I hope that all went and continues to go well, Harley!

  6. hi,...I had bi-lateral DBS Surgery and recently had my first programming visit. Very disappointed. I am only slightly improved, very discouraged after hearing what a great candidate I was for it. From what I hear, the surgery went great, the chips were accurately placed, etc. The surgical team is experienced and the best in the area. I know everyone is different and I read where it takes patience and a few visits before it is just right. I am going back in 2 weeks for my second programming. Any advice or words of wisdom?? I could sure use it...Thanks Rick

  7. Sorry for the late response, Rick, I hope that by now everything is ok, and problems are ironed out.