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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!!!