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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;