Traveling on vacation with Dystonia

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Permalink Reply by Jeanie on April 18, 2009 at 9:30pm

Deanna, I have traveled before I was actually dx'd with dystonia and plan to next year. Thankfully my insurance gives 3 mos on non-narcotic drugs. Others are a 30 day supply. I used to call them in for a re-fill and had a friend mail them to me wherever I was. I tell my Doctors that I'm traveling and they're very helpfull if I need something quickly. I have found some very helpful pharmicists in other states also. Help is available while traveling, but you need to spend a little time explaining your situation. Hope this helps.

Take Care, Jeanie

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Permalink Reply by Deanna on April 18, 2009 at 9:34pm

Thanks Jeanie. Can't wait to get back traveling.I went last year on a business trip to Italy and my husband was not able to go. He was not a happy camper. So he is so excited he can barely stand it. 14 days on a Northern European Cruise..... For those of you interested, the cruise and air right now is very very low. Just make sure you buy the travel insurance even if the big "D" word was not part of your life.
Thanks much for the advice Jeanie.

Deanna

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Permalink Reply by Jenn on April 20, 2009 at 9:58pm

I just traveled cross country, and I am going to Europe next month. I was really scared at first, but strangely enough the flight actually helped my symptoms.. I bought one of thse comfy neck pillows though. I am very interested to see how my transatlantic trip goes. I packed my cane, medication, and a note from my doctor and hoped for the best. I bought the insurance for my transatlantic trip. :P

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Permalink Reply by Deanna on April 20, 2009 at 10:01pm

When and where...it would be funny if we are both going the same place. I have flown to Europe a couple times, wondering how to adjust time wise with the meds. We are going as far north as St.Petersburg. 8 hours time difference. I read where you need to get used to new time zone a few days ahead so come next Sunday night, gonna do that. We leave next Thursday for London.
Deanna

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Permalink Reply by Jenn on April 20, 2009 at 10:16pm

I'm going to Belgium and Paris :P May 15-22 :P I am planning on not taking the medications. I am stubborn like that :P I really hope my trip goes like my trip to the West Coast went where my spasms mysteriously disappeared once I reached 30,000 feet and stayed gone for like 3 days :P That would be nice. I am going to bring my klonopin and soma just in case and maybe some stick on heating pads. I have never heard about the time zone issues. hmmm..

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Permalink Reply by Deanna on April 23, 2009 at 10:49pm

Jen, when you get back write about your trip. I will be back the 17th myself. We leave a week from today. YEA! Going to adjust our body clocks to help with time zone changes. Trying not to forget things. My mind is struggling to pull it all together these days, so I make lists and more list. Can't wait to see Northern Europe....Deanna

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Permalink Reply by Deanna on May 19, 2009 at 10:12pm

Have you gotten back from your trip, Jenn? We got home Sunday night. Have to tell you flying during the day is much harder then a overnight flight. We had been up 24 hours by the time we got home local time. We saw 8 countries and walked and walked and walked. Make sure you have more then enough meds. I ran out by accident and the last two days were hard on my body. Double check your meds...so important. It was nice to forget the disorder and just live in the moment.

Let me know how it goes for you.

Exhausted, Deanna

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Permalink Reply by MichelleSchwinger on April 21, 2009 at 10:56am

Deanna, I would make sure your plans are fluid enough to allow for you to rest. If you are newly Dxed, you may not know of all of your "triggers" yet. I went on a Caribbean Cruise in March, and had no difficulty with a flare-up-- until I got home, because I pushed myself so hard and didn't realize it. I also had the travel insurance, and prednisone with me. I don't know if it's common for people with dystonia to be helped my prednisone, but it helps me a lot when things get out of control!!

Michelle

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Permalink Reply by Nancy Muller on April 21, 2009 at 6:33pm

There is no reason you can't travel with dysonia, as we all do it. You can't stay home just because of it. You have to take a positive approach to the diosorder and if your able, do everything you can. Most people are and we all try to live life to the fullest. You actually didn't state what issues your worried about. You do the same things you do at home, only your away from the stresses of home having a great time wherever you travel to. Im assuming this is a pleasure trip. You might want to be a little more specific on what your concerns are and it's easier to answer your questions that way. But traveling shouldn't be an issue, please elabotrate a little and let us know juist want your concerns are.
Nancy

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Permalink Reply by Deanna on April 21, 2009 at 8:49pm

I am a adventurous woman. I have traveled many times not knowing a soul, but making friends from all over the world. I bunji jumped, sky dived, zip lines, hot air ballooned and love to travel. I am alot more progressed in my inability to walk then a year ago. I did not have the cramps in my feet and other limbs. Now not even leaving home, I struggle to not hurt, driving a few miles or even out of the neighborhood.

I want to enjoy this trip like I used to do everything else, full throttle. It makes me sad to think I could be limited from what I love. I don't want a 'storm' like others talk about, making it worse.

I am defintely going...from Florida to London all the way north to St. Petersburg. Can't wait, making my list and checking it two, three and more times.

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Permalink Reply by Jenn on April 21, 2009 at 11:17pm

I think adjustments just need to be made. I mean my trip to Europe was planned before my walking was affected. I had a serious discussion with my mom (who is going with me) about what we would be able to do. We have decided to allow lots of rest into the trip. I have spent the past two months measuring how much time in a day I spend sitting, laying down, and walking.. and have planned my itinerary around that. .. If I happen to feel a little better than that when I get there.. so be it. My foot and hip cramping is a serious concern for me as it seriously affects my mobility. So I have decided that I will make my Europe trip an eating trip.. sprinkled in with some sight seeing. Sure its not bicycling or catching the train to a different country every day... but its something and Im going to enjoy every day of it!

I know how you fell but dont be worried.

Have you seen twisted? Tell me you werent motivated when you saw that girl para-sailing. I know I was.

Live your life.~ you can do it... you may even have so much fun you'll forget about the pain until the morning.

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