My good friend Yvonne Ramler suggested I keep a blog of my journey with DBS.
With exactly 4 weeks to go til the surgery, I have decided that it's quite a good idea.
I am quite a public person, but don't want to post my experiences on facebook.
This blog is not necessarily for my friends, though some may want to follow it to know how my thoughts, emotions and general health are; this blog is for me, (may I be so blunt as to suggest that?), and for those who may have Parkinson's, and may be considering DBS down the path.
But i can't start here. There has been so much that has led to this point.
Not everyone knows me, and my journey has not just begun.
It began in 2003, when I was walking with my friend Debbie, on a warn Spring day. "Swing those arms!" Debbie commanded, and as I looked at my shadow in the hot November sun, I realised that my left arm was hanging limply by my side, and I was dragging my left leg.
That afternoon I was at my GP's, who immediately booked me into a neurologist the next morning.
As the neurologist was squeezing me in last minute, my husband, John and I had to travel to Frankston for an 8am appointment. Sometimes it pays to have a GP for a husband! There are no tests for Parkinson's that involve blood or urine; just the doctor's opinion. The crunch came when Dr Butler asked me to 'play the (air) piano". My right fingers merrily complied, whilst my left fingers barely moved. "You have Parkinson's", he concluded, and as John had to get to his surgery, he put me on a train from Frankston to Glenhuntley to digest this sudden information.
I was 44 years old.
Parkinson's was not a stranger to me; my father had it. He had had it for 13 years, and called it a 'nuisance'.
That 1st year of living with Parkinson's was my father's last, and I was able to witness 1st hand how insidious this disease can be.
I saw Parkinson's change from being a 'nuisance' to a 'hindrance'. In that last year I saw first hand the falls, the looking for appropriate nursing homes (do they exist?), the hospital stays, and finally the ICU before his life support was turned off.
But I am a positive person. My father he got it at age 63; I never saw mine as the same strand. I had "Young Onset Parkinson's."
Dr Butler started me off on meds, and my symptoms improved. I must point out that I was very happy with Dr Butler he had the courage to diagnose me on the spot, most unusual for a doctor to do for a young female. But I decided that I should go to a 'movement disorder specialist', and so, after hearing Professor Mal Horne talk in Cranbourne, I changed neurologists.
One of the first things Proffessor Horne told me, was that I was experiencing a 'honeymoon period", which would last approximately 5 years, and that I should "travel while you can." I was teaching at the time; I had the perfect job. I taught ESL at Heatherhill Primary School in Springvale. I only worked 2 and 1/2 days a week, and shared the position with Friederike, who became my lifelong friend, as we shared all aspects of teaching, preparing and reporting.
My Parkinson's barely showed at that stage, but I found that the 30 minute car ride was taking its toll; I was falling asleep at the wheel. Many a time I stopped at a traffic light, and opened them to see the car that had been in front of me was now a dot in the distance.
On one early visit, I remarked how tired I was. The next thing I knew, I was not going back to teaching! I never set foot in a classroom again. Professor Horne supported me in being pensioned out from the Education Department. I visited the Union, whom I had been paying all my teaching life, and after visiting 3 Health Professionals, the life long pension was granted.
And the travelling began.
My first trip overseas since being diagnosed, was to Minneapolis, where Cherie Rice from NSW and I attended the NPF's Young Parkinson's conference. We had a great time meeting many of the friends we had made online. I incorporated that trip with a tour of California, Vegas and surrounding areas with my mother in law and sister in law.
In the next 6 years, I went t o America another 5 times, usually for a conference, as well as to Thailand, Vietnam, Poland, Israel, Canada, and Hong Kong. Most of the USA trips I did solo; some o the others I did with my sister, whom had awakened and discovered that I was alive and not such a bad sort, despite us being such opposites. To this day, we are very close; she is a good friend and great supporter of everything I do. Something that unfortunately our parents didn't live to see. In 2009, I joined "Team Parkinson", and rode a (push) bike around Vietnam. I had to raise $6000 to be eligible. I don't know what was harder; raising the money, or getting on a bike, but with the help of my wonderful friends, I raised over $8,000, and will the help of wonderful Ingrid, I was able to make long distances on the bike.
For our 25th Anniversary, John and I had a big trip planned to The USA, Canada and Alaska.In the last minute our 2 boys came, as well as my brother.
I knew at the time that travelling was a phase.
And Professor Horne was right. Exactly a year ago, John and I had a wonderful trip to Amsterdam, Prague, Israel (where Friederike and I met with our spouses, proving that dreams DO come true), and 3 weeks touring the UK countryside of England, Wales and Scotland. (We'll leave Ireland for another time.)
I had already decided that I would not travel alone again.
But this year I woke up and declared that I had no desire to travel overseas.
The honeymoon was over.
2 years ago, on a routine visit to Professor Horne, he dropped a 'clanger'. He suggested that I was a perfect candidate for DBS.
I was shocked.
I have never had tremors (shakes). DBS was for others, not me! I was not 'bad' enough to have it. "not now,' he said, "in 2 years. I just want you to get used to the idea." Every visit he brought it up. Finally, he wore me down. And John agreed with him. John sees me as I am; he lives with me. I can't see what he sees. And I knew that Professor Horne was genuine, because as he does not perform DBS, he would lose me as a patient.
I decided that if I was going to have DBS, I was going to pick my team, and after asking around, moved to Assoc Professor David Williams for a second opinion. He is a neurologist who performs DBS, and I picked Mr Andrew Danks as my surgeon. shane, a member of my support group, had the same team, and was very happy with them.
So here I am.
4 weeks to go.
