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Monday, September 8, 2014

Traveling With 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!

Since being diagnosed with Parkinson's 12 years ago, I have done a lot of traveling both locally and overseas.
Living in Australia, this is no mean feat; it is 15 hours straight to The USA, and can be up to 25 hours to London, depending on how long the stopover is.
My mantra is; "Just go, sit there, do it". Whilst the ideal scenario would be to purchase a Business Class Ticket, the average person cannot afford the luxury, so here are my tips for traveling.

Travel Insurance
Don't leave home without it.
If relying on your Credit Card for insurance, read the fine print.
I use Covermore, and they put a small premium on top; not much.
DBS does not enter into the equation. I was told that it was Parkinson's that I had to declare, not DBS.
Hospitals, doctors, missed flights etc can be very costly. It is a MUST!!!

My husband always insists that I get a letter from my doctor, stating which meds I take, how often, and what strength. This is not just a precaution when going through customs, but also may come in handy if an emergency came up. If hospitalised, all info would be there. I keep it with my passport. Having said that, noone has ever asked me for it. But you never know...
If you are one to forget when you took your meds, pack them into weekly dosettes, and keep a day's worth in your handbag/backpack. With time changes, this is handy.
I always pack HALF in my suitcase, and HALF in my hand luggage; that way if one goes missing, i have the other half.
ALWAYS leave meds in original boxes. (besides the  day's doses).Therefore, I have TWO boxes of everything, packed into 2 makeup purses.
When taking long flights, and skipping over time shits, I take my meds every 4 hours when awake, and start my day's meds with breakfast on the plane, which usually is before landing. If landing late at night after an extra long flight, I take a normal daily dose, to last til bed time. Either way, this usually only ends up being one extra dose taken.

DBS Charger (if applicable)
This is the situation that makes me dislike the rechargeable battery so much, and this trip I think I made it better for myself.
On the left is the toiletry bag,
easy to put in overnight bag.
On the right is the cumbersome bag provided
which takes up too much room to pack.
My big gripe was carrying the charger when traveling.
Medtronics provide a carry bag for it similar to a camera bag. Whilst traveling interstate, I loathed it because it was something else to carry. With a suitcase, an overnight bag and a handbag to worry about, I did not need a fourth bag to carry.
This trip I solved the problem!
I removed the charger from the bag, and packed it flat into a toiletry bag I found.
Then I put it in my overnight bag. Voila! One less bag to carry and put through the airport screening.
Now I only had to remember to charge the charger at the hotels. (remember an adapter), and find the time to charge it! If hiring a car or going on a bus tour, an excellent time to charge is when traveling as a passenger. You have to sit                     still for hours, so make the most of it.

Going Through Airport Security
If you have had DBS, you cannot pass through airport security. Your device can be switch off, or ruined.
I always carry my DBS ID Card with me, and flash it at the attendants with the words, "Pacemaker!"
I don't bother going into DBS; many have never heard of it. Sometimes I say "Pacemaker to the brain" in conversation, but these people are well versed in Pacemakers, and the result is the same; you will be searched by an attendant of the same sex as you.
Just cooperate and enjoy the ride!

Dont Overdo It
Resting at Muckross House, Killarney, Ireland
Know your limits, don't do too much, We all push ourselves while traveling, and can pay for it in many ways.
If you don't get much sleep (like me), schedule a morning and afternoon activity, with a hotel rest in-between. Not always possible, I know. If on a bus tour, sleep in the bus. A 15 minute 'nanna nap' does wonders.
And if going to The Theatre in London, New York or anywhere else, make  sure your day is a light one, with a proper rest. You don't want to be nodding off during "The Book of Mormons" Hm hm...

My husband and I spent a long time investigating whether or not to take our phones.
We often split even for short times; he likes Galleries, I like shops! Even when shopping, we split; he takes too long in book shops. We needed to be in touch not just because of my Parkinson's, but just to know where we were.
Four years ago, before DBS, we were in Prague without phones, I came across a cobbled street. It was not particularly busy with traffic, but I just could not step across it. I stood there frozen for almost 30 minutes while my husband waited for me in a restaurant. Usually the solution to this predicament was to get down on my hands and knees and crawl, but I thought this action inappropriate in a main City street where I couldn't speak the language. However, frustrated at the situation, I eventually did just that, and arrived at the restaurant 40 minutes late, in an agitated state, to a very concerned husband.
So we decided that this time we needed a phone, but with Roaming Charges so high, it was recommended that we leave our SIM Cards at home.
When I traveled to America, years ago, it was cheaper to buy an inexpensive phone at Walmart, which included a SIM Card, but traveling across Europe, poses a dilemma; each country requires its own SIM. They are not compatible. Even Ireland and England required different SIMS.
We discovered that there are a range of International SIM Cards, and I diligently compared all rates. We both have iPhones, and taking them proved to be a great idea. Not only could we ring/SMS each other, but under our Hotel's WIFI, we could keep in touch with family and friends via email, Whatsapp, Skype etc. Sure we had a laptop and an iPad, but we could take our phones down to breakfast and chat to family and friends, use the phone as a GPS, and look up travel info on the go.
Here in Australia, I found The Safeway Card the best, but there are lots out there, and they work well in all countries.

OK, I admit it... my husband  and I flew Business Class to London this year; but we did not pay for the ticket. We flew to London via Hong Kong , and back via Singapore on Frequent Flyer points.
These points, or 'miles', were earned NOT by flying, but by spending on our credit cards. Check carefully if your credit cards are working for you, and link your Frequent Flyer card to as many services as possible.
In my case, I have a QANTAS Frequent Flyer Card, With both my VISA and AMEX connected. In addition, my phone provider (Optus) gives me points every month. I also receive points every time I shop at the Supermarket (Safeway). When hiring a car overseas, I choose one which offers points, and some Hotels do too. It's amazing how quickly these points accumulate with the right cards, through every day spending.
We only had to pay the taxes.
It will be hard to go back to economy next time....

Wednesday, April 23, 2014


Most people don't realise that the monitoring device (NOT the one implanted), have at least 2 modes.
This enables the programmer (in my case my neurologist), to plan 2 separate programs, targeting different parts of the brain.
Everything was going quite well, when I visited my neurologist one Friday last year.
However, when I mentioned that my walking was not too great, he decided to change my settings to see how I went. I was told that if it was no good, I could always change back.
The effects of programming are immediate. I felt a bit funny when I left his rooms, but thought that it would settle down. Somehow i managed to drive home.
Saturday was a quiet day, and i felt a little strange.
But it was on Sunday, that I fell apart.
I was scheduled to go to my local Young@Park meeting. I usually go with my husband, but he was at work, so planned to go alone. It was on the other side of the City.
I dressed, but was suddenly aware that I was kidding myself; I could barely move, my speech was slurred,  and I felt terrible.

I lay down, and started to look through the 4 books that I received as manuals.
I find them very confusing, and  was in no mood to sift for information.
Meanwhile my sister-in-law and niece dropped by to visit.
I knew that I needed to change back to MODE B, but couldn't read the symbol displayed on the device. We were trying to find the corresponding picture in one of the manuals. We eventually decided that I needed new batteries for the device... I couldn't change back till that was done.
Naturally we had lots of AA batteries in our house, but needed AAA..... A neighbour brought some round.
By then I was in pretty bad shape.... stressed out, and feeling terrible. I was in no shape to do anything. With my visitors feeling rather useless, and staring at me, trying to find the right chapter in the manual, I finally managed to change back; a procedure that would normally take a second, but took me over an hour.
The result was instantaneous; I was back to where I was when I stepped into my neurologist's room on Friday.
At my next visit to my neurologist some months later, I related the story. 
He suggested that it may be worth to try again, but on a lower setting. 
I declined!
I'm staying where I am now!

Wednesday, March 5, 2014

I'm Back!!!

Dear Karyn,
I am on the DBS track to have it done if I pass the psyco part,  I have had PD since 2004 when I was diagnosed, I probably had it for two or more years before that and did not know it.
I found your blog through Yumabev's blog.
I am a retired electrician and am 69 years old.  I live in western Oklahoma, 14 miles from the Texas state line.
As I said earlier, I am on the possible list for DBS and I want to know all that may be of interest with the DBS, good and bad.  I am reading all of your post that are on line and I signed up for your updates by email.
THANK YOU for keeping this blog going it has helped me a whole lot.
Even with the bad things that have happened to you and Yumabev, I think it will help me a lot.
Again I want to thank you,

WOW! I can't believe that my last blog was on December 2012! How time flies. It has taken Mike's email to shake me out of retirement.
And now that I'm here again, I see through my "Feejit" tool, that in the past 5 days, there have been about 50 visits from the following places.... Australia, America, Columbia, San Paulo, The UK, Spain,  Italy, Brazil, Hungry, Portugal, Bangkok, Norway, Rio De Janeiro, Bali, Venezuela, Buenos Aires, Oslo, India, Panama, Chile and Berlin.
I am overwhelmed!
And motivated to keep blogging.
I have some ideas spinning around in my head.

Whilst I ask you to come back, (or better still use the "FOLLLOW BY EMAIL" box, to receive blogs straight in your inbox,) while I finalise what I want to write, I'll leave you for now with an article that was written about me after I received the prestigious SIR ZALMAN COWAN AWARD in November 2014.

So come back soon to read about
*Travel & DBS (an update)
*Mode A and Mode B
*Parkinson Warriors
*How to start up a Support Group in your area.

See you all soon!

Karyn Spilberg
PS Mike, What bad? Mostly been good!!!

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.

Sunday, August 19, 2012

The DBS Rechargeable Battery

I was stunned to read on a FB Parkinson's forum, that many Americans, many of whom have had DBS, were completely unaware of the rechargeable battery. This blog is to explain some facts for those confused or curious.
Medtronics & St Judes offer 2 choices when contemplating DBS; the regular, and the recharchable batteries for the neurostimulator. (Implanted device).
A few weeks before the surgery, my neurologist asked me which I would prefer. We decided on the rechargeable one as I hope to live til 80+ (hah!), and that would mean 2 surgeries (every 9 years), as opposed to 8 (every 3).
The differences? Well, now after the event, I see that this is a point for lots of thought.

The main differences are as follows;
The regular battery lasts about 3 years, and one needs not to worry about maintenance until the 3 years is up.
The rechargeable battery needs to be replaced every 9 years. (I said "7" at the Conference, but a Metronics rep came to listen to my talk, and corrected me afterwards.)
In addition, the battery needs to be charged every one to three weeks. (Both need surgery to replace the battery.)
This is where the confusion came in.... it reminded me of the myths of recharging my Prius car when I purchased it about 9 years ago, and it was a totally new concept. Did I need to plug it into a powerpoint? One person on the Parkinson's website jokingly suggested there may be a USB port to plug into a computer for those of us who spend too much time on it!
NO! There is a device that one has to cover the neurostimulator with, and this recharges the battery. (left) This may take an hour or 2, and I recommend you do it whilst watching TV, or going on a long car journey.

This charger, (above), needs to be recharged... and this is where the excess hardware sets in.
Above is the whole Kaboodle that one receives when they opt for a rechargeable battery.... In the black bag, is a cord that connects to our charger AND to a powerpoint. So you must remember to charge your charger... There are also 3 manuals to explain your every concern in various languages, using text and symbols.
And then there's the programmer, which allows one to change settings within parameters set by their doctor, as well as check on the battery level of the neurostimulator.
This device (for both battery options), lives in my handbag, to be carried at all times. It can also turn the neurostimulator off and on, so handy if mistakenly turned off by a security scanner in a shop. (This has NEVER happened to me.) Some guys in my support group like to demonstrate the effectiveness of DBS, by turning their programmer on and off at meetings. I leave mine on at all times; after all I had the operation to feel better.

Finally, I'll leave you with an image of the area where my neurostimulator is planted. It does NOT protrude, and is barely noticeable. Bio Oil has kept scarring down.

I hope that I have not confused you too much; feel free to email me with any questions.

NB Please note that all above is my personal opinion, based on experience and reading.

Wednesday, August 1, 2012

Travelling with DBS.

I know for a fact that I have an large international following, and this blog is mainly for them.
Whilst my 'Travelling Period' of overseas trips are largely behind me, Melbourne's cold winter begged a vacation, so my husband and I decided to extend our time away after Brisbane, and tour "The Top End" of Australia, a trip we had been contemplaing for some years, but found too difficult to plan, due to the large distances needed to be covered.
Jumping crocodiles!
The map above may give you an idea of the distances; I live in Melbourne, (down the bottom), and travelled 2 hours by plane to Brisbane. It was another 2& 1/2 hours flight to Darwin from Brisbane.
I have already talked about going through the security at airports with the DBS Device; it is like a pacemaker, so one must be searched by a security guard instead of going through the electronic arch. That's OK, but once again I shall say how inconvenient it is to carry the whole Medtronics kit bag when travelling; even after disposing of the suitcase, I had a handbag and computer bag to carry, making it 3 bags to take on board; fortunately I was not stopped on any flights.
Darwin's steady 30C weather was welcome after Melbourne's 11C. We spent one day there relaxing, before hiring a car and setting off to Kakadu National Park.
I don't want to bore you with the details of our trip; just a few...
My husband, John & I immersed ourselves in 2 things; the Aboriginal Culture, of which we see nothing of in Melbourne, and Bird Watching (the feathered variety), which is John's passion. And there was plenty of beautiful scenery on the way.
Yellow River
There were lots of beautiful walks, but I kept to the easy ones; I'm not too confident on uneven ground. I found that 'hiking sticks' were very useful; I was much more confident using them. Using them is like having a banister to hold onto; especially good for going down uneven surfaces.
We went on about 4 different river cruises, each lasting about 2 hours. They were all different, allowing us to see birds and crocodiles in their natural environments.
Blue Winged Kingfisher
Even though it is winter here now (July), it is The Dry Season up north, and the time to be there. It is hard to imagine how anyone can tolerate life there in 'The Wet Season" (October to February), when it is humid and rains flood the area. We also saw many bushfires burning; these are necessary for the vegetation to regenerate.
My 'Emu"
A REAL Aborigine Artist
WE saw ancient Rock Art, drawn by Aborigines thousands of years ago. We even had a go at painting our own Aboriginal painting; We had to make our brush out of a reed, and strip the top til we had just one fibre; appreciating their art even more. I am very proud of my "Emu"!
The distances to drive were huge; it took us almost 4 hours EACH WAY to drive to Katherine Gorge; certainly worth all the driving.
I took advantage of the long drive to recharge my battery; sitting up in a car on a long drive is an excellent time to recharge. To be honest, I could maybe have JUST lasted the 2 weeks, and not taken it, but it's one of those things you don't want to be caught out without if you need it. So I made sure I used it!
Feeding the stingrays...
Next year my husband and I are talking of another Europe trip. I guess my message is; take things at your own pace; things have changed; listen to your body, and plan accordingly, but there is no need to give up travelling long distances, just because you have Parkinson's or DBS; there's a wonderful World out there, and now that there is no more dyskenesia or toe curling, go for it, and enjoy!

Mindil Beach Sunset, Darwin

Sunday, July 22, 2012

Parkinson's Australia National Conference, Brisbane.

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!

The 2012 Parkinson's Australia National Conference was held in Brisbane, Queensland from July 12 - 14.
For those overseas followers, (and I know there's lots), Queensland is meant to be our 'Florida'; i.e. warm in winter. My husband John and I left cold Melbourne in hope of warmer weather.
As expected, taking the medtronics charger on it's first plane ride, was a real pain. I had a handbag, my computer bag and the rather large and bulky charger to carry. I was frisked by security at the airport, as I cannot go through the detectors. That was ok, and expected, but also as expected, THE MEDTRONICS CARRY BAG IS A PAIN TO CARRY!!! Certainly too bulky. As there was a Medtronic display stand at The Conference, (they were major sponsors), I put my protest to the poor, unsuspecting staff, both verbally and in writing, as they gave me a survey to fill out.
And so, we walked 15 minutes through pouring rain to the Meet and Greet on Thursday night, where we registered, picked up our bags and programs, and said 'hi' to other Victorians.
The Governor General,
Her Excellency Ms Quentin Bryce
The next day the Conference started at 8.30am with The Governor General, Her Excellency Ms Quentin Bryce officially opening The Conference. Wow, I had always found her very poised, with a fabulous posture, but hearing her speak was a real treat. She spoke with such class and eloquence, revealing that her sister had recently been diagnosed with Parkinson's, so she had real empathy.
 Two very well known neurologists, Dr Barry Snow from New Zealand, and Professor Peter Silburn from Brisbane, then gave the key note address, talking about what they do.
The rest of the day was split into choices. I chose those presentations which were about people, rather than research.
The highlights for me were listening to Clyde Campbell of "Shake it up Australia Foundation", and Nicole Findlay, author of "Day by Day PD Diary."
Friday night there was a dinner which provided great vegetarian food for us, and a terrific band who got lots up on the dance floor.
A/Prof Simon Lewis from Sydney, led the Keynote address the next day. He was hilarious, telling us all about what we may expect, (constipation, falls, dementia....) with such humour that he had the audience in fits of laughter.
Again we broke up with 3 choices, many for allied care and medicos, but there was a choice for PLWP in every session.
Anne Atkins
Anne Atkins, also from Melbourne, spoke first about 'Creativity, Exercise and Socialisation.' I was envious as she spoke so positively without any notes.

Then it was my turn. The session was well attended. I hope (Yvonne) I spoke loudly and clearly, and there were good questions asked afterwards.

Other interesting talks that I attended, included Andrew Johnson, a brave newly diagnosed New Zealander in his early 40s, who gave a candid snapshot of the changes in his life since diagnoses, from lawyer to 'housedad' to his 2 young children. His positive outlook was infectious.
Jenny White gave a passionate speech titled "Parkinson's Disease; It just isn't sexy enough", and received a standing ovation to her plea for more recognition.
Niel Sligar, a PLWP in his sixties, amazed us with his gym work and fitness.
And Miriam Dixon, NSW CEO, kept us up to date with the "Young Onset Parkinson's Project.
Some of the Victorians who attended.
My husband, (a GP), attended more technical sessions; there were lots of research projects going on.... altogether a large group of people dedicated to making Parkinson's more bearable to others on so many levels.
The Conference wound up with awards being given out; Anne Atkins won one for her Poster Display, and was followed by a Panel Discussion.
I found the Panel Discussion very interesting. It consisted of "the boy's club", (my term), not a woman to be seen on it. The conference concluded with numerous members of the audience imploring the panel members to hasten more awareness and representation and funding within the Government. The audience became very passionate, and I hope that these representatives of ours will take note and hopefully by the next Conference (2015), we will see more dramatic changes in Government funding and appointments of Parkinson's nurses.
To sum up, the Conference was well worth attending; much more relevant than travelling to The USA!

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

Tuesday, March 27, 2012

Parkinson's Victoria's Ambassador Program

I work very closely with Parkinson's Victoria.
In the 9 years since I was diagnosed, I have watched them grow from a team of 2 social workers, to a huge team which includes a nurse, social workers, a marketing and fundraising coordinator, volunteer coordinator and a CEO.
From time to time I am called upon to talk about my Parkinson's Journey; to educate people about Parkinson's and tell my personal story.
PV puts out a kit, with powerpoint or overhead projector pages, which is very handy.
A translater is provided if necessary; I have done a session with an Arabic group, which was very successful.
At the moment I am talking to 1st year Medical Students at Melbourne University. They are interested in my story from a doctor's point of view. My main message to them is that so many people wait years to be diagnosed, and that doctors are reluctant to diagnose young people, especially females. Many have never heard of DBS. The sessions are enjoyable, with lots of good questions afterwards.
Last Tuesday, I spoke at "Tuesday, Shmooseday"; at a local senior citizens gathering.
I had my powerpoint presentation ready, and after about 20 minutes of fiddling, got it working. I was able to supply facts as well as covering my own story; including the formation of Y@(Young at Park - a group of younger people living with Parkinsons who meet up socially), my travels, The Vietnam Challenge, The Unity Walk and DBS.
The talk was well received.
School friends Judy and Debbie

 Tuesday Shmooseday 

I have been accepted to talk at The Parkinson's Australia National Conference, which will be held on 13th & 14th of July 2012 in Brisbane. I'll be working hard to improve my powerpoint presentation and it's content! For more information on the conference, go to 
If you would like me or any of The ambassador team to talk to your group, contact Parkinson's Victoria o9581 8700.
A reminder; if you have chanced upon this blog for DBS information, scroll down to the beginning of the blog

Saturday, March 10, 2012

Weight and DBS.

OK, I'm going all out now. You've seen me at my most vulnerable; bald, stapled, dyskenesic. Now you can see me fat!



Above are 2 photos taken 2 years apart; as a teacher, we had them taken annually.
I have mentioned that my mother was a diabetic; she died aged 58 of complications from diabetes. As I entered my 40s, I began to resemble her more, so I decided to lose weight.
Ironically, I ended up avoiding diabetes, but inherited my father's disease; Parkinson's.

I was diagnosed in 2002, so on the one hand, felt great about myself, whilst on the other hand had this baffling disease to digest. I had lost 'a person' in weight by eating less and walking. For the next 9 years I managed to keep a respectable level of weight, mainly through my secret exercise regime, which I will share with you now; my involuntary movements!
These having stopped, along with my walking being difficult, and my bike riding stopping, have resulted in putting on about 4 kg in 7 months, which, my neurologist assures me, is quite normal.
Great! Normal, but not nice.
My plan?
I have already committed myself to Pilates. I still try to ride once a week with Ingrid. I walk Molly 2ce a week with Yon. And...yeah, off the junk food.
Hah! WE will see what the future brings. I hope to be back in my Levi's by this year's Unity Walk. (August).
3 weeks after DBS August 2011
Feb 2012

August 2012
4kg is A LOT to lose!!!!

Saturday, February 25, 2012

Travelling with DBS

Greetings from Tasmania.

Tasmania is the small island at the very bottom of Australia's mainland. (left)
 It is magnified on the right.

We put our car on a ship and sailed overnight. Other option; a 50 minute flight from Melbourne, and hire a car.

Since being diagnosed with Parkinson's, I have travelled extensively overseas. I now see this as a phase. I certainly don't mean that I won't do it again, but not annually. There's still a lot of our beautiful country to explore, and whilst places like Thailand may be cheaper, Australia is easier.
Earlier on, I showed all the equipment needed to recharge my battery. (The Paraphernalia,
August 2011). The end result is lugging a 4kg bag around, which is fine when filling one's car for a driving holiday, but a pain when flying. Also, one must remember to recharge every 2 to 3 weeks. Why did I choose this over the non rechargeable option? Because I only have to replace the battery, which requires surgery, every 7 -9 years, as opposed to every 3 years. A tip for recharging; sitting up in the car whilst a passenger on a long ride proved much more effective than recharging whilst watching a movie at home.
Medtronics, (the supplier), gave me a card so that I don't have to go through airport security detectors; a body search instead. That's something else to look forward to...not.

But here I am in Tasmania, the first time in 32 years, since my honeymoon. And how Hobart has changed... The Wrestpoint Casino, the main attraction in 1980, is now a mere building in the distance, fading behind the Battery Point wharf area, with its Salamanca Market, restaurants and the City at it's doorstep.
MONA Gallery

The MONA Gallery (Museum of Old and New Art) is a must. Though not to my taste, (too modern), one must appreciate David Walsh's design of the building, (one feels like they are inside a pyramid), and his rather confronting art. (Is a "POO machine really art?)

Tasmanian Devil
Then there's Tasmania's beautiful countryside and wildlife; the real reason we came here.
We have driven right around the Island, seeing some lovely scenery.
I've lived in Australia all my life,but until yesterday, I had never seen a platypus in the wild. Also first sighting for me of a Tasmanian a sanctuary. The only ones I saw 'in the wild' were squashed on the road...

Cradle  Mountain
Yesterday presented my biggest physical challenge.
We are at Cradle Mountain, and walked around Dove Lake.
This 6km usually takes about 2 hours, but with my hesitant steps, and Yon stopping every 15 steps to look at a bird through his binoculars or take a photo, it took us 3 and a half hours. But I made it! Tip; Hiking Sticks helped...makes going up and down uneven surfaces, feel like you are holding onto a banister.
And The views were worth it.

Saturday, February 18, 2012

DBS, Speech and Voice

One of my biggest fears of having DBS, (after personality change), was loss or change of voice.
Being an ex-teacher, I had learnt over the years, to make myself heard in a crowd; to make people listen.
Public speaking was never daunting to me, whether it be at my son's year 12 graduation, as part of The Ambassador Program for Parkinson's Victoria, or talking on stage at last year's Unity Walk at Federation Square in front of over 2000 people.

Talking on stage at Unity Walk 3 weeks after DBS.
However, lately I wonder if my voice is going soft.
Either that, or my husband is going deaf. I find he's continuously saying, "what?", and I'm repeating myself a few octaves louder.
As the voltage is turned up, my voice seems to go down.
And my tongue seems to be in the way more and more.
At my last visit with my neuro, he turned the voltage up about 1.0. I immediately slurred my words, and didn't know where to put my tongue. Although he turned it down, I have been slowly increasing my voltage by 0.2 on each side, and wonder if I'm getting quieter.
My friend Yvonne, who is a speech therapist, says she is watching out, and doesn't see much change, but on this vacation, with just my husband and I, I am really noticing it.
I am not too worried about it, just pointing out may occur with DBS. I'm sure that when I mention it on my next visit to The neuro, he will twig it. I'll keep you informed on that one.
Next blog will be about coping on vacation. Stay tuned!

Thursday, February 16, 2012

Feeling Fine in Feb

After my negative post 2 weeks ago, I would like to balance it with a more positive one.
In my "Not Happy (in) Jan" post, I mentioned that I was not able to dance at my friend Lynda's son's wedding. Well guess what? Lynda has 3 sons (& a daughter), and her second son was married 2 weeks later, giving me a second chance to dance at one of her son's weddings. (the reason they were so close together was to allow overseas guests to attend both.)
I am feeling much better. What's changed? I went to my neuro, who not only 'turned me up', he also put me back on one of my old medications; Slow release Sifrol.(low dose Mirapex).
I had been feeling under medicated, and felt that going off all my meds except for Stalevo, may have been a bit ambitious.
It rained cats and dogs during the Chupa (service), soaking the newlyweds, who along with their families, took it all with the good humour that they are legendary for.

The wedding was lovely; and I'm able to report that I was able to dance MOST of the night away. I gave up just before midnight; but hey! I wasn't the only one!

A test of my stamina comes now. I am in Tasmania for 2 weeks. For those international followers, here's some homework; google a map of Australia and look WAY downunder!
It's notorious for it's beautiful walks, so stay tuned to hear how that's going.

Wednesday, February 8, 2012

At The 6 Month Mark

It's been 6  months now since my DBS Surgery, and time to reflect how it's going.

To do so, I will begin with the wishlist of 6 things that I wanted improved, which I wrote in July before the surgery.

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
I had dropped the Madopar, (Sinamet), Synnetrrel, Sifrol (Mirapex) and Serrequel, and was only taking half the strength  Stalevo.
However, after not feeling great for the last few months, I have resumed the slow release Sifrol.
2. Stop dyskinesia
All involuntary movements have stopped. I am now very still. 
3. Get a good night's sleep
Was doing really well; getting about 7-8 hrs, but since i've resumed the Sifrol, I'm back to my old habits; it's 4.24am now! So still working on that one!
4. Improve handwriting
Handwriting is still illegible, but I was told that wouldn't change.
5. Stop toe curling
Toe curling is a thing of the past, as is 'freezing'. I can now walk my dog and go alone to shopping centres without fear.
6. Drive better
Definitely improved. No longer wandering into other lanes.

Other issues
Bike Riding skills have deteriorated; I am slower, and go for shorter rides. Whether this is a fitness thing, or a confidence thing, I am fortunate to have a willing bicycle partner, Ingrid, who is still happy to accompany me every Wednesday. hopefully we will make it to Southbank and back from Brighton (36km) again eventually. But I still do ride.
Movement is still being worked on; walking has been an issue since the 'honeymoon period' wore off. This is something that my neuro is working on.

One must not expect DBS to be a magic 'cure'. Everyone is different, and it takes a while to adjust the device and meds to get it right. Again, I believe that having a competent, caring neurologist is really important. I have faith that together we will reach a point where I will feel as good as I did straight after the surgery.
I am blessed to have a patient, loving and supportive husband, and fabulous, understanding friends who are always there for me, giving me lifts and always asking how I am.
I am constantly asked, "Would you do it again, knowing what you do now?" The answer is, "Yes". I have gained my independence. Hopefully I will fitten up, and sort out issues with my neuro, feel even better soon. A positive attitude helps!
My first haircut in 6 months

A note on my Vietnam Bike Ride Blog
If anyone has clicked the link on the right to read about my bike ride to Vietnam almost 3 years ago, i have just discovered that I had Fred's blog up all this time, not mine. It's been corrected to my link.
Would I do it again, knowing now what was in store? NO!

Friday, February 3, 2012

No, No, Don't stop the Blog! (Amy Winehouse)

There are times when I think that I should stop writing the blog. I only write when I have something to say, so there are big gaps in time. 
I suggest that if you are interested in any future blogs, you fill in your email address in the box on the right of the blog, and any posts I make will be delivered right into your inbox.

Thanks for the letters of concern after my big whinge. I went to my neuro, and he adjusted the device and put me back on a low dose of Sifrol. (Pramipexole hydrochloride).
i know that it will take time to reach the right setting, and have faith that I will get there.

Meanwhile, I would like to share some emails, many from people I have never met before, which tell me that people are finding my blog, and that I am helping them in their DBS Journey. If not for this feedback, I would have stopped long ago, so please let me know if you are following me from another country.

Thank You for the blog.  I happened upon it by chance this morning as I was looking for more info on DBS.  My wife, Louise who is now 61, has had PD for about 9 years.   We are considering DBS at some point.  Much of your experience is similar while some is not, but that's PD.  I was especially interested in your sleep, or lack of it,  stories as well as the entire DBS surgery and aftercare.  I hope all is going well/better after your most recent neuro visit and would encourage you to continue the blog.  I will have her read it when she returns home this afternoon.

Marshall, Oregon USA

And from Louise;

    I hope you are having a good dayl My husband wrote you yesterday after reading your complete blog.  I read it also.  Your blog is the best!!!! Our PD journeys sound very  much alike. I hope to see a new entry from you soon!  Louise

Hi Karyn, 
My name is Michelle  and I found your blog through a parkinson website in the United States. 
Im currently reading your blog and find it incredibly helpful and wonderful. 
My Husband is 42 and was diagnosed with PD when he was 35 - started having symptoms about 1.5 years earlier in 2004, but we thought it was his back causing the issues. 
We have two little girls ages 7 & 2 and he is considering DBS next summer.  
I am glad to see you have continued your blog and wanted you to know that it is still helping people who are facing this surgery. 
Thank you
Michelle, USA

Thank you Karyn
Please keep sending them as they help me learn about PD and DBS as well
I hope you keep going well 
and all the Best
Kevin, Sydney, Australia

I just read your blog and I am so glad.  I had my DBS about 6 weeks ago, and have been very discouraged.  I still shake, my toes still curl under, and in some ways, I am worse than before.  But after reading your blog, I realize that it may take some time.  I just wish I could see ‘something’ better, you know?

Thanks for writing the blog, and please don’t stop.  Or you can write me direct too.

Barb Lambert

Hi Karen I am interested in your news, I have been reading your journey, please keep talking !! I'm listening.
Take care, Liz x

Like the update, I check it regularly, keep adding.

Yuma Bev, USA
   Dear Karyn
I remember first meeting you 'online' when Paul and I sponsored this lady from Melbourne for her Vietnam Bike Ride! 
Ever since that day Karyn we have followed your journey living with Parkinson's Disease, supporting you by attending as many of your Y@P meetings as we possibly can, considering we have a long journey from Geelong!!  Even our 2 teenage girls have enjoyed attending your gatherings and have grown to admire you and everything you have been through.
Not only have we met at many different functions along the way including the Support Group Meetings and the Unity Walk but we have become friends as well.
We have read every word of your Blog with great interest and infact learnt more about the DBS procedure from your very informative articles and that makes our following of your previous couple of months so much easier to understand.
Not only did you achieve your goal with the help of your loving husband and 2 sons but you allowed all of us in the greater Parkinson's community to also follow your story.
Loved listening to you on the radio, watching you on George Negus and generally just knowing that you 'did it'.  You managed to achieve what you set out to do and that was to not only attend the Unity Walk but to actually participate only 3 short weeks after such a major life changing experience.
Thanks again for a great blog, with many good wishes for a healthy future.
In friendship
Louise, Paul, Carmen and Danita, Geelong, Victoria

From a very courageous and incredible woman;
I read your entire Blog going right back, and it all looks quite scary stuff. I admire your great courage at going through with this. It must have been a very difficult/worrying 
time for yourself and family. You are amazing!

Elaine, Israel

I would keep it going for as long as you are willing. with your tv appearances, etc., who knows what this could turn into. i've read every entry.
David, Jacksonville USA

And finally, from my loyal commentee, Dan of Vegas USA;