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Thursday, July 28, 2011

One Week To Go! Lots of Questions.

The countdown is certainly on.
Today I saw my neurologist for the first time since my new date was given. (The original date was 11/11/11).
It was question time for DBS, and Yon and I had lots of them!
Q When do I stop taking meds?
A The night before the operation, except for Sifrol, which stays in the system longer. Stop that the day before.
Q How long is the procedure?
A Part A (brain part), takes about 4 to 6 hours. (awake the whole time)
Part B (stimulater), takes about 45 minutes. (Asleep)
Q How long in hospital?
A 2 to 3 days.
Q What sort of stimulater is being used?
A You have 2 choices; one that needs its battery replaced (with surgery), every 3 to 5 years, or a rechargeable one which needs replacing every 7 + years.
I went for the rechargeable one. I'll recharge every couple of weeks while watching TV for an hour.
Q When can I drive?
A in 6 weeks.
Q how long til the stimulater is turned on?
A After 2 weeks.
Q How do you get those leads from my brain through my neck to connect to stimulater?
A Don't worry about it; you'll be asleep.
Yon had lots of questions about the schedule, as he has to go to work in the afternoon. It's the first week of the uni semester. At least it will keep his mind occupied.
Associate Professor Williams insisted that next Friday is going to be a lot of fun, and that he had lots of good jokes.
Fun for him, not sure about me....

Tuesday, July 26, 2011

Plates On My Walls

There is a saying amongst us Parkies, that no two people show the same symptoms, or take the same drugs. Also, the drugs we take affect people in different ways.
Mirapex, known here as Cabaser, has been responsible for some very compulsive behaviours, and it's manufactures have been subject to many class actions and individual suing in The USA, the UK and here.
Whilst there is no doubt that the drug has been beneficial in alleviating movement problems, the trouble has been the compulsions that People Living with Parkinson's have endured, and the failure of the manufacturers to warn it's customers. Gambling and hyper-sexuality have led to many, many deteriorations in marriages and relationships, particularly in the early to mid 2000s, when many did not realise what was going on.
It took a friend in The USA, whom I knew to be a good girl from a good home, to tell me her story in Washington DC, where we met at The World Conference, before she was jailed for 7 years for embezzlement, for me to realise how lightly I had got off.
I immediately asked Professor Horne to take me off Cabaser, which he did no-questions-asked, and it was like a switch was turned off.
And why did I get off lightly?
My crime was to buy lots of plates, mostly from ebay.
The cornices of my house are lined with them.
There's my movie wall; a great ice breaker at dinner parties, my travel wall, my Jewish wall, my "I just like them" wall. Plates range from $1 to $200; most were under $30.
A year later, I had forgotten my ebay password.
And my friend in the USA? She was not so fortunate. She will be released from prison within 12 months.... after being incarcerated for almost 7 years.....

Saturday, July 23, 2011

It's Official; I'm Sane...

Not everybody is eligible for DBS.
There are a few factors that may render someone an unsuitable candidate.
The psychological state of mind of the candidate has a lot to do with it.
Besides the more obvious reasons, such as readiness, age and progression of the disease, there are others such as compulsiveness, (I'm getting to that), physotic behaviour, and memory loss, which may preclude someone from having the surgery.
Therefore all candidates for DBS must undergo a neuropsychological assessment.
So off I went to Cabrini, for 3 hours of testing by a neuropsychologist.
Memory tests were a big feature. Not only did I have to repeat long lists of things, name as many things that start with A, and count backwards by 7, I also had to redraw complicated diagrams, and copy numerous picture of those difficult puzzle blocks. (see above). After one and a half hours, I was considered sane and fit for DBS, and could leave early.
It's amazing how far $550 will get you... cash please, no credit cards accepted....

Tuesday, July 19, 2011

6 Things I Want Improved by DBS

My handwriting, 1982 and now

When I first went to my present neurologist, I had a list of 6 things that I hoped DBS would fix. I showed him the following list, (in no particular order), and he said that DBS should fix 5 out of six. Can you guess which one he says it won't?
1. Take less pills
2. Stop dyskinesia
3. Get a good night's sleep
4. Improve handwriting
5. Stop toe curling
6. Drive better

1. Take less Pills
No-one likes to swallow lots of pills; besides ingesting unknown toxins, there are the side effects, which is a whole other topic. But without the pills, I could not move. Yet one of the most noticeable side effects is dyskinesia. (unwanted movements.) It seems that the very pills we have to take to move, can in some way also be a hindrance....
2. Stop Dyskinesia
People who know me, know that I can't stand or sit still. I am always twisting and turning. I have actually broken china in Dalgarnos. I pity the 3rd person in my row of seats travelling on the planes around Europe last year. The upside? I have lost weight; I get a good workout every day.
3. Get a good night's sleep.
See below
4. Improve handwriting
Sigh...and I used to be a primary teacher and teach kids to write! I no longer write cards or cheques, and if I write a shopping list, I'm bound to not know what-the-hell it was that I wanted when I get to the shops. Thank G-d we live in the computer age. And I just discovered the notepad ap on the iphone....
5. Toe curlingI .
think I mentioned this earlier.... usually happens early in the morning, occasionally, but not often during the day. My toes curl under, and I liken it to walking on your knuckles. Toes go one way, big toe the other. Ever tried to walk on your big toe? impossible. In the days when I got up at nights, I would often be 'stranded' at the other end of the house, where Yon couldn't hear me. I would call out for Molly, who usually sensed i was on the floor, and I'd curl up with her and wait for Yon to wake.
At other times, I would crawl back to bed...if Molly would stop licking my face and let me....
6. Drive Better
About 5 years ago, I notified Vic Roads that I had Parkinson's. This means that my GP must declare me fit to drive every 2 years. My driving is not as good as it was, I admit. I had a small accident last year where I swiped a mirror off a car travelling in the same direction. I was driving like I walk, and had wandered into the next lane....slightly. As a result, I drive MUCH less, and only to the local shops. My husband, my 2 boys and my friends are happy to drive me around, and I rarely take a passenger. I have a tram at the end of my street, and a train nearby. I was not very popular when I brought the Vic Roads forms to a meeting a few years ago, but I reckon when my GP says I can't drive, then its time to give up.
And the answer is... handwriting! I can live with that!

Sunday, July 17, 2011

Sleep; or lack of it.

And so, here i find myself at 2.45 am, writing my next entry.....
Sleep deprivation is very common amongst us 'Parkies".
For the 8 yrs that I have had this illness, insomnia has been a huge problem. I think that I mentioned that it was a big reason that I retired from teaching early. For 8 years, I have lived on an average of 4 hours a night.
I often comment to Yon, who as I write is sleeping peacefully, that it is just as well that I have a good nature; I could be a real bitch with the amount (or lack of) sleep I get!
This lack of sleep has led me to meeting many international fellow Parkies over the years. There are various chat rooms where one may safely meet these people, and I have built up a large list on Yahoo.
After 8 years, I had enough. I was conking out at 3pm, and need a powernap.
So late last year, my neurologist referred me to a 'Movement Disorder' Psychologist.
I have, for years, refused sleeping tablets, as I figure I swallow enough pills as it is, and I was afraid of addiction.
Finally, I am on a small dose of Serrequel, which is used in bigger doses for depression or schizophrenia.
It was explained that the medication I take for the lack of dopomine, makes my brain overactive.
So now I take my pill, get about 6 to 8 hours, (am usually up at 6am when alarm goes off). The off side is vivid stupid dreams. But usually I stay in bed when I wake, (often hourly), and I no longer need that power nap.
The upside is that my Scrabble, literati and backgammon skills have improved greatly.
Sleep deprivation is very common amongst us Parkies.
... back to bed..... I have a wedding tonight...

Thursday, July 14, 2011

The Podcast is available to all!

  • Young @ Park
    Listen: | Download
    We talk about LIVING with Parkinson's with people associated with the Young @ Park Parkinson's Support Group Catherine Watson a Community Development Worker with Parkinson's Victoria, Karyn Spilberg is the Founder of the original Young at Park Group (based in Melbourne) and Shane Murphy a local Geelong member of the Young at Park Support Group. They chat about their involvement, and journeys with Parkinson's. Shane has had "deep brain stimulation surgery" (DBS) with great results: Karyn is having the same operation early August, and we will talk to her again at a date to be arranged. For more information, and to find support near you, go to - or OR Free call: 1800 644 189

The podcast from the interview with Greg McHenry, which aired on Tuesday July 12th, is now available loud and clear by clicking on the following link;

Once there you can either listen to the interview on the computer, or download it to your computer.

It is also available on itunes as a podcast.

What IS DBS?

After both my brother and my sister showed surprise at the fact that I would be fitted with a monitor, or 'pacemaker', I began to wonder if everybody really knows what DBS is!

Basically, in my own words, I will have 2 holes drilled in my head, and 2 probes, inserted, which will cross over to one side, with wires attached which will be joined to the monitor. This monitor sends out signals to the probes, which will stimulate my brain, tricking it into thinking that the dopamine that has been lost, is there.
The operation, therefore, will be done in 2 parts. I am awake for the 1st part where they drill into my head and insert the probes, but asleep for part 2 when the stimulater is inserted, and the wires hooked up.

These 2 examples take under 30 seconds each to watch;

The battery in the stimulator usually needs to be replaced every 3 years or so, but I am opting for a new rechargeable model, which needs to be replaced every 7 years or so. (Replacing batteries requires surgery.) Yes, I'll need to sit still for an hour every 2 weeks, and recharge.
And yes, I'll have to opt for manual checks at airports...

NB. DSB is NOT a cure; it is rather a mask. The disease progresses as it would, prompting adjustments, and if switched off, the person reverts to their present state as they would be without it.

Wednesday, July 13, 2011

Radio Star

Today was a very adventurous day.
I left home at 8am, and caught two trains to Werribie, where Catherine from Parkinson's Victoria picked me up and drove me to Geelong, a satellite city about an hour and a half's drive from Melbourne.
There we met fellow Y@P member Shane, who lives locally. The three of us were to be interviewed by Greg McHenry on 94.7 FM (The Pulse).
Greg is a very interesting man; a recovered alcoholic who hosts a show called "Road to Recovery", where past guests have included Mental Health, Parents and Friends of Lesbian and Gays and Centre Against Sexual Assault.
We were scheduled to be on air between 11am and noon.
The interview went very well. We talked about Y@P, DBS, the upcoming Unity Walk, and other Parkinson's related matters.
I'm not sure if anyone I know except my sister Diane heard it, but if interested, go to

after Thursday to download the session as a podcast.
Greg asked if I would come back after my surgery to talk about my experiences, so I guess I will be back!

Tuesday, July 12, 2011


I have had many people contact me, and say that they want to be 'followers', or 'add a comment,' but can't, as they are not members of Google, AIM, Wordpress etc.
My suggestion is that you simply join Google by creating a username and password, (one you will remember).

Monday, July 11, 2011

Wigging it

In order to drill the 2 holes in my head, during DBS, my entire head will be shaven.
Today I went with my friend Haya to look for a wig.
Haya wears wigs all the time, so I chose her to accompany me into The City. She generously gave me one of her precious days off during the school holidays; another of my special friends.
As you know, my hair is very curly, and sort of my trade mark, so I was hoping for a curly wig. But curly wigs are hard to come by.
Diane, my neighbour and wig fitter, took one look at my curls, and said, "time for a change." I knew then that I would be walking out with straight hair.
We started short, and ended up long. The short ones made me look older. The long ones younger. I also wanted a long one to hide any sign of the leads that may show through my neck.
Finally we found one I liked. I was just about to have the fringe cut out of my eyes, when Diane shouted, "what about this one?" She produced a slightly darker and longer wig than the last one, and that was it.
Haya and I could not get over how much I look like my sister, (also named Diane).
Afterward I went to Ripponlea to do some food shopping, and felt at home with the shaiteled women there.
I sent Yon this photo; his answer?
"What a spunk. Don't tell my wife that we slept together."
Thanks Yon, but I know you prefer me with curly hair.
But straight hair is better than no hair.....

Saturday, July 9, 2011

Freezing in the Supermarket

Though it is winter here, and pretty cold, the title is not eluding to the weather.
People living with Parkinson's can freeze up, and not move.
One of my most annoying symptoms, is the curling of my toes.
When that happens, I literally don't have a leg to stand on! I have only my big toe for support, and one cannot walk on that. I liken it to walking on your knuckles.
Yesterday, I decided that I needed to go to the butcher, and to the supermarket. Nothing unusual about that. This is an normal task for normal people....
I drove to Glenferrie Rd, parked the car and made my purchase at the butcher.
I knew I was 'off', but was able to do that OK. (By 'off', I mean my meds are no longer effective).
Suddenly, the task of getting in the car, driving 500 metres to Malvern Central, shopping there and getting back to my car, overwhelmed me. I decided to head home.
But I didn't have all the ingredients for dinner... so I decided to stop into my local, smaller Safeway.
I grabbed a trolley for support, as well as use, and felt the freezing creep in. My shoulders froze, giving me a hunched look. My toes curled, I could barely walk, my mouth curled. I felt 100 years old.
I rang my son, whom I knew was home... no answer.
There was no way I could drive home like this.
Then, as luck would have it, I bumped into Jan, who lives 2 streets from me. She immediately offered for her son Ashley to drive me home.
I limped around, picking up essentials for dinner, then Ashley drove me home in my car.
The generosity of people I know continues to humble me.
30 minutes later I was fine; freezing had passed, and I was able to make dinner.


MRI today.
This is necessary so that the neuro can determine where the neurosurgeon will drill the 2 holes on the top of my head.
As I call my husband, John "Yon", i will refer to him as "Yon" from now on.
Yon had a meeting at the practise in Hampton Park at 8am. I had to be at Monash Medical Centre at 10.30. Both are far from here, but in the same direction.
At first Yon told me to go alone; it would not work out for him to drive all the way back to get me. I figured that was OK..I could drive there.
At midnight on Thursday night, I hopped onto Facebook. One of my oldest friends, Anita, (been friends since grade 2), was concerned about me going alone. Though she had to be in The City (opposite direction) at 9.30, she was trying to figure out how she could at least be there when I came out, and what to do with my car. I was touched.
A minute later, Ros, my neighbour and good friend, hopped on FB and also offered me a ride.
My point is, I am blessed to have such loyal and genuine friends... stories of their generosity and genuine friendship are yet to emerge, I'm sure.
As it turned out, it was my very best friend, Yon, who came through... he came back from the meeting, then backtracked to Monash.
The MRI itself? No big deal...just noisy!

Friday, July 8, 2011

A few words about Y@P

Once diagnosed, I headed for the computer, where I found solace and company in chat rooms. There I met people with this 'disease' in common with me.
But I wanted to meet people in person; local people.
The first people I met, were Leonie and Bron. (Bron has since passed on.) It was great to talk about Parkinson's with others who had it and understood.
Ross Collins invited me to his group, where I met the Brocchis, loyal Y@P friends to this day, and Liz and Mark.
I decided that I was too young to go to the local support groups.
So I started up my own.
With the support of Parkinson's Victoria, I arranged for a group of us to meet at a Richmond pub.
Y@P - Young@Park, is for Young Onset who also are not ready for local, older groups. We have guest speakers. Our issues differ; many still work and have kids at home.
The group has grown over the years, with about 40 turning up to our informal gatherings.


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.