The End of The Blog???

And so, this journey comes to an end....or is it a new beginning?

I think I should leave it here, on a high.

I have accomplished what I wanted; and that is to diaryarise my journey with DBS and  raise awareness of Parkinson's.
DBS has been successful for me. Now it's just a matter of fine tuning.
My thanks go to Professor Horne, Mr Danks and A/Prof Williams and above all, my devoted husband John Spilberg, all of whom made a seemingly difficult journey easier.

I only hope that readers have enjoyed reading my journey, and I hope that I have touched some people considering DBS, and helped them make a decision.

I know that comments are practically impossible to post here, so please email me with your comments and feedback, or any questions, and I will post them here in my final blog.
I look forward to hearing from strangers from around The World, as well as friends. So those from The USA, Canada, Ukraine, UK, Singapore, France, Malaysia, Israel, India, Pakistan, Latvia, Japan, New Zealand and of course Australia, I know you've looked, please write!

Thanks for your support,

Karyn Spilberg
    karyncurly@hotmail.com

The 2011 Unity Walk.

And what a day it was!

By Thursday night, over 80 people and dogs were registered under my team, Karyn's Crowd. With many more registering on the day, our numbers swelled to about 100.

We were identifiable by our backs.

Even though The walk started at 11am, I had asked everyone to be there at 10.15am, which was fortunate, because at about 10.20am, I was called up on stage to be interviewd by Derek or Scott (sorry not sure which), to talk about Y@P-Young@Park, the Young Onset group that I established in about 2005.

I brought my beautifully behaved dog, Molly on stage with me. We were beamed on the big screen throughout Federation Square. 

Then Chanel 7 wanted to interview me about my DBS experience, for the 6pm news. This turned out to be to our team's advantage, because Channel 10 wanted a shot of Parkinson Victoria's CEO, Anne Burgess, and me breaking through the ribbon, so my team was led to the start of the queue of about 2,500 people.


Melbourne was looking beautiful in the late autumn sun.

The actual walk was 4km around the Yarra River.

The yellow tshirts we all wore, were a sea of colour, 

After the walk we tried to have a group photo. Unfortunately we left out some people who's dogs slowed them down, and some who had to leave. But you can get the idea of the numbers in our group.

And how did I manage on the day?

My friends commented on how still I was on stage; no dyskenesia.

I had no trouble walking the 4km; I was not afraid of freezing.

The 'fog' around my eyes had lifted, and I felt great.

Really, who wouldn't, with so many friends and family around me?

I am truly a lucky woman.

Yon, Molly and me

I'll leave you with some shots of family and friends.

My son boosted the team by bringing 15 mates

Friends since school days

My sister untangles Molly and Sacha

Lynda and her beautiful puppy, Billie

Tired at the end

I have raised over $1,200.00. Thanks to all those who donated; especially the anonymous 

ones who I can't thank personally!

Feeling Better

If there is any one out there still reading my blog, 3 weeks on I am feeling much better.
I had my voltage turned down to .6, and am taking over 50% less medication than before.
Tomorrow is The Unity Walk, and I have about 90 people and 16 dogs registered in my team, Karyn's Crowd.
Photos will be up shortly after The Walk, so come back and look.

The Unity Walk.

2010 Unity Walk

And now for one of the reasons for the blog.
All has been building up for The Unity Walk here in Melbourne at Federation Square, on Sunday, August 28th 2011.
I have been using this as a lead up for my recovery.
So far over 60 of my family and friends have joined my team, Karyn's Crowd. And 7 dogs. Dogs get to wear a bandana by registering for $7.
However, Molly will be very noticeable in her attire. Thanks to Leeanne, who dressed up Poppy last year, for the idea... Molly will be wearing my bike riding jersey from my Vietnam Bike Ride, resplendent with "Parkinson's" and logos of Parkinson's Victoria.

If you'd like to join Karyn's Crowd and walk with us on the day, go to this link;

http://www.unitywalk.com.au/Events/VIC/SupportGroups.aspx  

If you can't make it, but would like to donate to the cause, go to this one;

http://sponsor.register.eventarc.com/sponsor/view/74646/karyn-spilberg

I hope to post lots of fresh photos on the day.

Honeymoon is Over; I Retract the Last Post

I write this page for those who are following my blog in anticipation of taking my journey in the future, not for sympathy.
on the weekend , and up to yesterday I felt on top of the World.
Today I feel like S**t!
What happened, you may ask? I went for my second programming yesterday, and I feel awful.
Yesterday A Prof Williams showed me how to tune the remote device I have. I was on .5 of a volt, and he turned me up to 1 volt. That is double, but not much when one considers that he wants me to increase to about 2 in the next two weeks, and ultimately 3.5.
He also wants me to drop my Madopar, and cut the Serrequel by half.
Yesterday I felt an increase in foot movement, and one shoulder.
Around dinner time, I was feeling anxious, and fuzzy headed. (Not just looked fuzzy headed!)
I was in bed at 9am; pretty early for me.
I couldn't sleep.
I felt awful.
At about 11pm, I woke Yon, and turned myself from 1 volt to .8; the lowest I was allowed. (A Prof Williams can set my parameters).
This morning I still feel fuzzy in the head, and no longer feel like a bike ride, despite the early glorious pre Spring Melbourne Weather.
I am expecting a call from A Prof Williams after noon.
Just wanted you all to know that there are ups and downs, to be expected.
I'm sure that they will be fixed.

And The Outcome IS....

Well, it's been 2 weeks since surgery, and, I hear-by declare that it has been a success.
I feel 'normal', (whatever that is).
I feel 'even'; i.e. no offs or ons.
I don't move stiffly.
I don't have those involuntary movements.
Last night I slept 10 hours.

Friends since grade 1; Lynda, Judy and me

And, on Sunday, at Miffany's Bat Mitzvah, I danced The "Nutbush." (Thanks to Sue Karp for joining me). Who cares that by the time it finished, I'd finally got the steps?
And so I look to the future.
Sunday is The Unity Walk; more about that soon.
But what I REALLY want is to get back on the bike.
Ingrid, maybe NEXT Wednesday, we can go riding instead of coffee?
I'll ask A/Prof Williams when I see him later today....

The Paraphernalia

Well, no one told me about all the paraphernalia that goes with DBS.

I mean, I knew I had to recharge, but was stunned to learn that I had to carry all this home from my session with Medtronics....

My implanted device is rechargeable, meaning that surgery to change the battery is every 9 years instead of 3. So I need to recharge my battery every one to 3 weeks. The bulk of the 'booty' is to recharge the recharger!
To recharge ME, I need to sit still for an hour with a disc draped over my device. (a difficult task in itself; I'll watch a movie).
THAT recharger requires a charger that plugs into the wall.
In case you get as confused as me, there are 3 manuals that I can read; in 3 languages.

Then there's the smaller device that looks like a mobile phone.

(right)

That tells me if I am switched on or not, and allows me to program the device in me as much as the neurologist allows.

Guess it will be handy to carry around if I accidentally get switched off while walking into a shop with theft control...

Watch George Negus tonight at 6.30pm

For those in Australia, my journey will be told on The George Negus Show at 6.30pm tonight (Thursday).

Hopefully I will be able to provide a link for overseas followers after the event.

DBS Turned on Today. Hooray!!!

Today is the another milestone; turning on the DBS Stimulator. A lot of people still fein surprise when I mention this, so if unsure, check my post "What Is DBS?"
Basically, I have something like a pacemaker inserted in my chest, to stimulate those probes which were inserted into my brain.
Yon and I rocked up to A/Prof William's rooms at 9 am sharp. (I'm certainly not used to peak hour traffic; it took 3/4 of an hr to do a 15 minute drive)
WE were greeted by A/Prof Williams and Emily and Clinton from The George Negus Show; they wanted to film the big event.

A Prof Williams asked me a few questions, and it was declared that there were already improvements.


*I was not dyskinetic  ie had no involuntary movements
*I had not experienced any 'off' periods
*or 'toe cramping/curling' since surgery.
It was explained that there is a 2 week 'honeymoon' period after the surgery, when the brain swells and may people's troublesome symptoms disappear. After 2 weeks, many people go back to as they were, after experiencing a false sense of euphoria.
A/Prof Williams then brought out a huge programmer, and turned on 1 volt to each side. As he did so, I felt a fuzzy rush up each side. I was asked to do the usual 'party tricks', (right) and A/Prof Williams was satisfied.
However, I felt a bit fuzzy round the head, and it was decided that 1/2 a volt may be enough for now.

Humour during DBS?

A/Professor Williams promised me me that we would have fun during the surgery, and many have asked me for the funny side.

To be honest, I can't remember most of the jokes, but the banter in The Theatre and general mood was a positive one of a team that got along well.

THEATRE STAFF; You have the "B" team today; yesterday we had the "A" team in here.

By the way, "B" is for "Best", "A" is for "Average", but don't tell them that!

MR DANKS (surgeon); The only word you don't want to hear me say, is "OOPS!"

One of the exercises used to see improvement is to (pretend) to play the piano. The neurologist is looking for the size of the fine finger movements.

And so the best joke comes from Meyer Harari, the 91 year old father of one of my oldest and best friends, Lynda Ajzner;

PATIENT; "Doctor, doctor, will I be able to play the piano after brain surgery?

DOCTOR; "Of course you will."

PATIENT; "Great, because I can't play it now!"

A Week after DBS; Staples Out

Well, it's a week since DBS, and I'm feeling pretty good.

Today I get my staples out of my head.

Just before the halo was removed, Mr Danks stapled my head back in place.

I tried counting, but lost count. "How many was that?" I asked. "Too many for me to count." was the answer.

I didn't realise that my head was going to be sliced open and peeled back, thus needing to be put back in place.

I was told to go to my local Gp, so Dr Yiap had the honour of removing them. Lucky her! I was given a special device to pluck them out. I took 2 panadol half an hour before, just in case it hurt.

But it was ok. And the count? 44 in total; 13 around the left ear, and 33 over the top of the head.

It still looks like they are there, but my hair is growing.

If I go out I must wear a scarf, hat or wig, as it's cold outside (winter here), and I look like The Bride of Frankenstein!

THE Big Day; The DBS Surgery.

And now for the part you all are waiting for; my recollection of the actual DBS Surgery.

I was awakened at about 5am by the nurses. I was fasting, of course, and taking no meds. I was able to take my meds up to the last dose the night before, as they would be out of my system, except for Sifrol (Mirapex), which stays in the system for much longer. I had ceased that on Wednesday. I had a shower, and was instructed to wash my hair with a disinfectant twice. At 7.00am Yon arrived, and at 7.30 I was wheeled to surgery.

In the photo below, I was not smiling; I was 'off', and my face was frozen in that stance

Once down in theatre, my hair was shaved. I was introduced to the anaesthetist, Gayle, whose job it was to make me comfortable, and take photos. I said a t

eary goodbye to Yon, who was not allowed in the theatre. The TV team of 2 arrived, but I was unaware of them throughout the surgery.

Next I was given a light anaesthetic and the frame, or halo was attached. I went for a CT scan.

I was woken for the gruelling long DBS surgery. By this time it was about 9am.

A few words about the halo.

The halo was attached to my head in 4 spots, by bolts, and then attached to the table. There was a bar over my eyes, making it difficult to see in front of me. I therefore had little vision at all, and really nothing to focus on, which made it very difficult later on.

Two more holes were made for the electrodes. The drilling of the two holes was felt, but not in a bad way. Of course the areas were anaesthetised, but I felt Mr Danks using what I can only describe as a hand drill; as if he were grinding a pepper grinder. And of course I could hear it. That over, the he inserted the probe to my left side. Mr Danks used sounds tracking my brain, to mark the spot, and when he felt he was near, A/Prof Williams, felt my legs and my arms for rigidity.

The most difficult part for me, was to stay awake. Prof Williams had to keep reminding me to open my eyes, as the brain is more active when they are open, but I had difficultly in doing this. With little to focus on, I could feel my eyes closing, and it took tremendous effort to open them. When Mr Danks felt that he had the right spot, the electricity was turned on, and Prof Williams asked me to open and close my hand, touch each finger to my thumb as wide as I could, whilst he kept manipulating my arms and legs, looking for signs of rigidity. Finally both were satisfied and the whole process started again on the left side.

However, things did not go smoothly there. My toes curled, my foot cramped, my face screwed up and both doctors were unhappy with the result, so the probe was taken out and reinserted, and the process started for the 3rd time. By this time I had had enough, but it was over.

My backed ached. I had been screwed to the table for about 5 hours.

I was told that I could move my body, so I arched continuously.

Suddenly the frame was taken off, I was put to sleep again, and the stimulator was inserted into my chest, and the electrodes were guided down the side of my neck and connected to it. This took approx 45 minutes.

I awoke back at the ward.

How did I feel? As if a bus had hit me.

I kept telling my friends and family not to visit me, but a word of advice on hindsight would be to have someone sit with me straight after recovery. I was left alone, with things out of my reach and disorientated. But Yon finally arrived, and then my boys.

Yon,as mentioned before, slept over nearby, to be with me on Saturday.

The Day Before The DBS Surgery

I awoke with a thousand things on my mind. Did I pay that bill? I haven't packed yet, and of course, Is my house tidy?

The George Negus Show had arranged a 'mock interview' at Associate Professor Williams room at noon, and were coming here to my house after to shoot as well.

Though I know many of you are rolling your eyes, thinking, "does she need this added stress", it actually was a good distraction.

My youngest son, Ronnie, dropped me near The Alfred Hospital, and I was greeted by Emily, the reporter, and John, the camera man. A/Proff Williams had the afternoon off to do submissions or some other paper work, so we did not feel rushed. Cross at myself for hastily cutting my hair so short, I wore my straight wig. I least I will be incognito.

We went through lots of questions; about the DBS procedure, how I felt etc, and I must admit some of my questions were answered; I learnt a new thing or two about DBS.

Then back to my hose for a few more questions over a cup of Peach tea, (thanks, Belinda and Binx), and it was almost 3 o'clock; admission time.

Ronnie dropped me off at Jessie Mac Private Hospital, in Monash Medical Centre, where I went for a blood test and was checked into my room.

Nothing much happened for the rest of the day. Yon came after work, Yvonne R visited, I went to bed early, ready for The Big Day.

I Survived Deep brain Stimulation (DBS)

It is Saturday night at the moment. I am in good spirits, alive and well. Please be patient;

I will write details of the operation when I get home on Monday. This blog shall continue until The Unity Walk on August 28th

The Three Days Leading Up To The DeepBrain Stimulation or DBS.

It's now Wednesday night, and Friday is coming around fast. Yesterday and today have been spent doing things like paperwork and attending appointments. (dentist, podiatrist...). And of course catching up with friends.

Yesterday I had a very short haircut, as recommended by my neurologist.

No sooner had I cut all my curls off, when my mobile went off... It was Darren, who is doing PR for the upcoming Unity Walk.

He had asked for my permission for The George Negus Show to film my DBS operation. For those international readers, George Negus is a respected reporter who has a Current Affairs show on at 6.30pm, straight after The News. George was one of Australia's original "60 Minute" reporters. As the doctors would not allow my husband in the theatre, I predicted they would say "no" to having a TV crew in there. But both the neurologist and the surgeon said "yes". I spent a while contemplating if I really wanted my brain exposed to national Australia. Yon's main concerns were for me; we don't want the surgeon distracted... Judith from Parkinson's Victoria was very keen, and I suppose that's what swayed me. As an ambassador for PV, my aim has always been to promote awareness of Parkinson's; from travelling to overseas Conferences, to giving talks at various venues, to forming Y@P, to riding a bicycle around Vietnam. Now I was being given a chance to promote the Walk on Prime Time Television. I have a story to tell which some people find interesting. But at the end of the day its about the Walk, not me.

Tomorrow is a big day; The DBS surgery. Some interviews with the show, and admission to hospital.

Yon is sleeping nearby to the hospital on Friday night, and will be joined by my boys for Shabbat dinner, so I have to buy food for them.

My head is spinning with things I still have to do.

But I won't leave you here.

This blog will continue until The Walk.

Stay tuned for details of how the actual DBS procedure went, my emotions during and after, switching on the device, and ultimately measuring the success.

Thanks for all the well wishes, I'll be back soon... keep checking.

PS How do i feel now, 2 days before?

Unusually calm....

A letter To Professor Horne.

Dear Professor Horne,

this email has been on my mind for a long time. I certainly haven't forgotten you.

I guess that you knew that I would have to leave your care to pursue DBS as you don't do it, but I want to keep you in the loop, as you have always had my best interest at heart.

I always tell everyone that you said that the 1st 5 years of being diagnosed were the 'honeymoon' period, and they were.

I also tell people that you said, 'travel while you can', and I did.

You also said that you would like me to have DBS in 2 years time, and here I am.

When you first suggested DBS to me two years ago, I was shocked.

It was not for me. I have never had tremors. I am not THAT bad.

But after 18 months of wearing me down, I finally left for a second opinion, and ended up at Assoc Professor Williams.

The last 2 years have certainly been out of the honeymoon period.

I can't believe that I did that bike ride around Vietnam only 2 years ago. I don't think I'd contemplate it now, (especially after having DONE it, and knowing what I was in for.)

I also can't believe that I lugged 2 suitcases around America all those times; in and out of airports, ALONE.

This year I woke up and said, "I don't want to travel overseas this year.'

John and I enjoyed 10 days in Palm Cove instead.

I can't imagine taking a holiday without him.

And so it is YOU who has led me to my latest journey; a different journey than I am used to.

You have always given me sound, sensible advice, and I'd like to thank you for your care over the past 8 years.

You were there for me when I decided to give up teaching.

You encouraged me to travel.

You listened and asked no questions when I told you that I wanted to go off Cabaser (Mirapex) in the days when it's side effects were just becoming known.

You adjusted my meds when necessary.

You suggested DBS.

I thank you for all the above, except the last one; you may have to wait a month for me to decide if my thanks is warranted.

I am scheduled for DBS surgery this Friday, August 5th.

I have complete faith in my team of Assoc Professor Williams, and Mister Danks.

I am extremely calm about the operation. I remember you once saying that it is just surgery like any other. Messing with the brain is no more dangerous than other surgeries. (Not your exact words, but something like that). That thought is in the back of my mind.

So as I approach Friday, I just want you to know that even though it has been almost a year since I saw you, you are not only not forgotten, you are remembered with affection and respect.

I hope that I may, in the future, thank you for starting the ball rolling for DBS.

Time will tell,

Karyn Spilberg