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.

Hobart

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 Devil...in 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.

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!

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.

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.

Conclusion

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!

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;


Karyn,

    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

Karyn,

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

Texas

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;

KARYN...AS MY GAL AMY WINEHOUSE WOULD SAY....NO...NO...NO....DON'T STOP THE BLOG.....THERE IS AFTERCARE YOU CAN BLOG.....SO AS DAN YOUR ONLY COMENTEE WOULD SAY....BLOG ON WOMAN....BLOG ON

Not happy (in) Jan

I and am very aware of the 2 different audiences who may read his blog; 1. People Living with Parkinson's, many who are considering DBS, and 2. My fabulous and concerned friends, and so I try my best to keep a positive outlook. However, I feel that I would not be doing either groups justice if I only painted the good, whilst experiencing bad.
This blog reflects my feelings at this moment; of course I expect it to be temporary, and to be fixed.
I have been feeling like s**t for the past 2 months.
Now don't think that I regret DBS, or anything like that; no freezing, toe curling or involuntary movements is great.
My walking has been an issue for a while. I slide around on polished floors, shuffle on carpeted ones, and find that walking Molly around the block is an effort.
Yon, (my ever patient husband) drags we around Princess Park with Molly about 3 times a week but I am relying more and more on his arm.
Not having my 'dyskenesic daily workout' any more, has resulted in me putting on weight.
Whilst pilates and water aerobics are in the pipeline, the thought of exercise is daunting.
And my confidence is down.
Bike riding is shortened or halted, and things like 'chuking a U turn', leave me in a state of panic.
My mood for the past 2 months has been 'flat'. If someone else tells me thats normal, I'll flatten THEM!
The temperature has reached about mid 30sC or high 90sF for 5 consecutive days.
Last night things came to a head whilst I attended Yoni and Lauren's wedding.
Yoni was the 1st child in our crowd to be born. His mother, Lynda has been a close friend since we met in grade 1. Lynda was just 22 when she had Yoni; the eldest of 4 gorgeous children, and I was most excited to attend his wedding.
THe first dance bracket I managed; dancing with women only, a slow shuffle with so many on dance floor. By the 2nd dance bracket, I just couldn't do it, and sat it out with Yon.
The third was mixed dancing, and it was then that I lost it. I really wanted to dance, but couldn't. As everyone gyrated enthusiastically around me, I clung to Yon and couldn't move my feet. They were glued to the floor, and I could only manage a small step here or there, without moving my feet much.
I sat down and the tears flowed.
The wedding was beautiful in all ways except for the way I felt, and hopefully no-one noticed my predicament. Except of course Anita, another very 'old' and dear school friend, always perceptive and supportive.
I really hate to sound so negative.
I go to see my neurologist tomorrow, and hopefully we will be able to resolve this, and my next blog will be a positive one.

Lynda's Aunt & I wore the same dress!

A different type of "off"

I haven't blogged lately, because I have not been feeling great, and I don't like to complain.
For the last 2 weeks or longer, I have been struggling.
I have been dragging my feet, finding it difficult to walk, getting tired from walking, and not wanting to do everyday tasks such as cooking and cleaning and accounts...OK, Ok, more so than usual!
In that period of time, I have tried to soldier on as best as I can. A trip to Chadstone (Melbourne's largest shopping Mall) on my own, saw me sliding across the floors, and taking my car from one end to another. I drove, but made sure I was home by 3pm.
I have ridden my bike with an ever patient Ingrid, but it has been a struggle, and we have only gone 1/3 as far as we used to. Our short break to Halls Gap resulted in my husband hiking up the mountain with out  me; I had no confidence.
I attributed all this to being either 'undermedicated' or 'underzapped'.
As my appointments with my neurologist are now 2 monthly, instead of fortnightly, I decided to wait for my early January appointment, and nut it out then.
Friday night I felt absolutely flat.
I discovered that my monitor read my device as flat, and watched the complete season of Downton Abbey Season 2 while I recharged it.
When it finally got to 100% recharge, I felt no better.
Looking at the monitor, I noticed the word "off" flashing...
Yep, the device was off, and has been for at least 2 weeks, maybe longer.
I turned it on and immediately felt a rush of electricity go through me.
Suddenly I felt great; completely different.
The prospect of going to a New Years Eve BBQ turned from an attitude of apathy to one of looking forward. I was back to my normal self. (whatever that is...)
A lesson is to be learnt here. The manual clearly states that one should check the device daily with the monitor. As I couldn't change my settings, (I presumed that the neuorlogist had set the perimeters so I couldn't), I didn't bother checking.
I must have pushed the gray 'Off" button, instead of the orange one next to it which displays information. This is easy to do as it is placed against the device, and I can't see what I am doing.
Anyway, all is good now...think I'll go sort out that linen cupboard that has been bugging me..
Happy New Year to all, may 2012 be a great one!

Karyn

11/11/11

11/11/11 is Remembrance Day here in Australia. And whilst I stood for a minute's silence at 11am this morning in respect for our fallen soldiers who gave their lives to our freedom, I could not help but think of how today was to be a significant day in my life.
11/11/11was my original day for my DBS. Fortunately I was moved forward 3 months, and had it done on 5/8/11 instead.
Whilst I am happy that it is all behind me, my wig is no longer necessary as summer approaches, etc, my thoughts are with Leonie from my Y@P group who took my spot. Leonie, you are in good hands with the same team as I had. I wish you luck.
People Living with Parkinson's (PLWP) all know that no two people are the same; everyone has different symptoms, no 2 people I ever met took the same drugs.
I am writing this because I just read a comment from another Y@P member.
Ric wrote"This post has really made my day/week/year. I'm quite encouraged by the results you've seen, and I'm happy that you have found real healing - FINALLY. If my surgery goes as well as yours I'm going to run my wife Jennifer into the ground with outdoor activities. Here's to a new life and that it sticks around."
Ric, I really hope that your experience is as positive as mine. I am looking forward to hearing how both you and Leonie went when we meet next year at a Y@P meeting, and you are both 3 months plus down the road.
I am glad that you have enjoyed following this blog, and that you and others have gained something from my posts. I admire your optimism, but keep in mind that DBS is not a miracle cure. If it goes well, it can make a huge difference to a person's quality of life.
When I asked Professor Williams how good can I hope to be, he answered, "As good as you are when your meds are functioning at their best".
And that in itself varies from person to person.

Nice to be Appreciated

Today at The Parkinson's Victoria AGM, I was awarded with a 5 Year Certificate of Service, "In Recognition of Outstanding Service Supporting the Mission of Parkinson's Victoria." Always nice to be appreciated.
I received a certificate and a Parkinson's Rose bush.
An added surprise was that my 'old' neuro, Professor Mal Horne was guest speaker, so I was able to thank him personally for setting me on the DBS path.
Thanks for the pic, Moira.

Back on the Bike

The Story So Far....
For those who don't know my biking history... I had not been on a bike for some years, when I was approached by Parkinson's Victoria to take part in The Vietnam Challenge; a fundraiser that took place in Vietnam. Details can be viewed at http://parkinsonschallenge.blogspot.com/.

With Brendan and Fred; we were the only riders with PD in the group.

Anyway, my friend Ingrid took on the role of training me, and we have been riding for 3 years, right through the year, every Wednesday, summer, winter. Until this year. I started to lose my confidence, slowing down, turning back, and then Ingrid injured her groin, making riding impossible for her. So I had not been on a bike since before Easter. (7 months).
The Story Now...
So, post DBS, with Spring weather tempting me, I have been wanting to ride again. But not sure how I'd go.... and with my mentor still out of action, have been asking various past riding partners to come with me. Though I have had several offers, nothing has eventuated. 2 weeks ago, Yon (hubby) accompanied me, but weather forced us to abandon and have brunch instead.
Sick and tired of excuses (I know people are busy), I decided to go out alone for the first time. The day was perfect, and I'd missed too many of them already.
I was apprehensive; not sure how I'd be, so decided to go to St Kilda Beach,where there is a straight stretch of about 3 km to Port Melbourne.
I hitched the bike to the car, was ready to go, when my son Ronnie emerged also decked out in riding gear. Ronnie has become a serious rider, and is training for marathons. His intention was to ride to Franston and back; an 80km round trip on the road along the beach in the opposite direction.
When he heard that I was going out alone, Ronnie insisted on abandoning his plan and accompanying me.
We rode to Port Melbourne and back. (about 6km total).
How was it? Like getting back on a bike! i was fine. Need to fitten up, but fine.
I now look forward to my 35km round trips to The City from Brighton.
Anyone want to join me?

Three Months On

So.... how am I doing 3 months on?
Pretty well.
I have cut down my meds to practically nothing....
From Stalvo                           4 times a day
         Medapar (Sinnemet) 1/4 4 times a day
         Sifrol  (Mirapex)            1ce a day
         Symmeryl                      1ce a day
         Serrequel                  1/2 at night

To    1/2 strengh Stalevo         3 times a day.  

That's it.

I just gave up the Serrequel a few nights ago.
I took it for sleeping, but though I got my 8 hours, it gave me horrible vivid dreams and made me grind my teeth really badly.
So though I am writing this at 5am, I am happier having given it up.

I have decreased my visits to my neurologist from 2 weekly to 2 monthly; we feel we are almost there with the fine tuning.

I have no freezing any more, no toe curling and no dyskenesias, (involuntary movements.)

My hair is growing back.
So overall, all is good.

The weather is hotting up. STILL not on my bike yet; mainly because I have noone to ride with, but I hope to be on soon, and will blog then.




     

Happy New Year

Last week was a very stressful week, and PD and stress do not mix well.
Usually I am NOT a stressed out person.
But the Jewish New Year is enough to stress ANYONE out. Sort of like cooking a Christmas dinner, but a different menu.
The family comes over, the house must be tidy, a special meal must be cooked.
Unfortunately, or fortunately, Yon and I have a very small family; 10 were expected, with a niece in Israel, and we ended up with 11 with a last minute guest. Not huge at all, but still, 11 or 51, a meal must be cooked.
With all 3 males at work on Wednesday, I was left with the job of doing EVERYTHING.
I had bought all the food, and chosen my menu, (exclusively from The Yavneh Cookbook), so that I didn't need to run out to buy anything on the day.
But just looking at the unmade food made me worry about how to turn it into a special meal.
I made the soup and an entree on Tuesday.
But by Wed morning, I was in a bit of a panic.
To top it off, a cold snap made it unpleasant to go outdoors.
No one had thought of buying me Challas (bread), so out I trooped to get them.
I was in quite a tizz when my South African friend and neighbour, Ros, dropped by with an amazing cake.

That did it; I lost it completely.... Ros had 24 people at her house, and she baked ME a cake!
Needless to say, that afternoon my other niece, Bianca, came to help me, and by 4pm all was done, but still, I sometimes wonder if my husband and sons forget that I am just 8 weeks out of surgery.
When I show signs of not coping, or snap, my husband says that my personality has changed.
Perhaps the surgeon should have programmed me to be a Steppford Wife?

The Blog Continues....

Thanks to all those who have encouraged me to keep blogging. I received lots of emails from friends both with and without PD, from here and from overseas.
It's those with PD who really spurred me on.
I apologise to those who tried to post comments here; I have posted them under my name, and if you continue to email your comments, I will continue to post them.
My posts will be irregular, as I will only post when I have something to say, so the best way is to subscribe by email, if you haven't already; that way my posts just come into your inbox, and you don't have to keep checking the blog.
Finally, I'd really like to hear from the people who I know read the blog from other countries, but I don't know you; don't be shy; I know you're there!

Karyn
karyncurly@hotmail.com

Personality Disorder???!!!

Yesterday I went to the neurologist to be tuned again.
My main concern was my 'turned in' left foot.
Though not painful, I was keen to fix it to halt any bad habits which may result in poor posture or balance.
A?Prof Williams turned me up to 1.8 on my left side, and 2.0 on my right side; the first time both sides were not the same.
Apparently the 2 probes each have 4 electrodes at the end of them, which can be adjusted in 4 different directions.
They were adjusted too,
I was asked to wait 45 minutes to see how things settled, and sent on my way to a restaurant in Toorak Rd for a friend's birthday. After that I went across the road and purchased 2 pieces of clothes.... a black dress, and a top to go over it.
For those foreigners who are reading this blog, I must point out that Toorak is Melbourne's most expensive suburb, and not one that I usually shop in. Save that info for later....
I came home, had a rest and got up....that's when the fun really began.
I felt restless. I couldn't concentrate on my book, (Lovely Bones), or the computer, or seem to cook dinner.
At wits end, I decided to walk Molly.
I walked up the street to my my friend Ros, and gave her a  big fright.
I was acting vey strangely. I was speaking very weirdly. Though aware that all was not quite right, I don't think that I was aware to the extent.
I rang Yon, and told him that something s wrong.
He had just turned off the freeway, and would be another 20 minutes.
Meanwhile, Ros was trying to get me into her house, but I refused.
I took off with Molly to meet Yon.
I finally met Yon on Neerim Rd and jumped in the car.
He was worried as Ros had rung to alert him of my strange behaviour.
We got home, but I took off with Molly, and Yon had to chase me.
Finally home, I tried to concentrate on dinner. I needed help.
By now my behaviour could only be likened to a happy drunk.
I was loud and saying silly things.
My 25 year old son was bemused, but worried.
Yon insisted that the outfit I'd bought earlier was impulse buying.
Anyway, after dinner, Yon turned the voltage back down, and I settled down.
I took the serroquel for the 1st time in 4 days, as I'd got to sleep at 5.30am that morning.
I had a good night's sleep, and Yon rang A/Prof Williams in the morning and he suggested I turn down the stimulater further.
I was fine today.
Conclusion? I don't think that my body can tolerate large increases of voltage; better to increase gradually.
And the outfit?

Well, I really am due for some new clothes... What do you think?

6 Weeks on...Fine Tuning.

This entry will only be up for a few days. I suspect that few are checking the blog now; I asked for feedback, and received it only from friends.
But in case there's any one curious as to how I am at 6 weeks... here goes.
A/Prof Williams and I are still fine tuning.
I have control of the stimulator to a point; parameters are set.
Just to confuse me, there are two modes; A and B. I am up to 1.0 on B (original mode), and 1.6 on A (new mode). Last week, when I hit 1.5, my left foot turned in, making walking uncomfortable; but NOT painful, so I stopped.
I am now taking MUCH less medication. Besides stopping Sifrol (Mirapex), I no longer take any Madopar.
I just take Stalevo 4 times a day, and one Symmetrel.
Also, I have stopped the Serrequel completely, because I did not like the vivd dreams I was experiencing.
Unfortunately, I am not sleeping as well as I was.
Other than that, my movement continues to be still, and my friends notice a great improvement.
I can finally  drive (hooray!), and hope to mount my bike next week as Spring weather hits beautiful Melbourne.
I'm off to A/Prof Williams today, where I hope that my foot issue will be resolved, and Molly and I can enjoy some walks together.
I still wear my wig when out, as my hair has not covered the scar yet.
If you want me to continue with sporadic updates, please email me and let me know, or else I will assume that I am talking to myself, and no one is reading this any more.
Karyn 
karyncurly@hotmail.com

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...