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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