POTS-friendly vacations?

[dianaD]

Hi all,

I've had POTS for almost a year now, and would like to consider going on vacation with my husband and 2 kids. I have orthostatic problems still, need to exercise, and of course, can't tolerate heat. Does anyone have any ideas or places that worked for them? Thanks!

[Roselover]

This is a great question! I hope we get some good suggestions. Does anyone know if you can take your own wheelchair with you on the airlines? I'm sorry I don't have input, but I look forward to hearing from others.

~Roselover

[Poohbear]

Check out this Federal guideline for Air Travel and disabilities

http://www.delta.com/pdfs/14cfr_part382.pdf

I got this off of Delta's website but this is the Federal guidelines.

In terms of vacations I guess my first question would be do you want to drive or fly?

If you want to drive, what part of the country are you in?

Last year I went to the Mayo Clinic in MN at the end of July/beginning of Aug. Obviously, I wasn't there for a vacation but I felt SO much better there because it was much cooler than where I'm from and it was not humid at all. (I live in the deep south where it's hot and humid).

I have also been to Lake of Bays Canada in August and it was a great place. Quiet, beautiful and it would warm in the day enough to swim in the lakes in the afternoon but at night it was cool where you would want long sleeves.

If you wait and travel in the fall it may be cooler and feel better for you but that may be more difficult if your kids are in school.

If you aren't used to higher elevations I would stay away from those as that could exaccerbate your symptoms.

How old are your kids? I ask because that can make a difference as for what is fun for them to.

[MightyMouse]

I have been on many vacations with full blown symptoms. Best for me in the continental US would be the two major theme parks in Florida because I could use a wheelchair instead of walking through the park in the heat.

My other favorite is a place where we actually own a vacation package--unlike a time share, I own weeks that I may use whenever I like. It's run by "palace resorts". They have a number of hotels thoughout Mexico. The two I've visited are Aventura Spa Palace and Xpu Ha Palace. Of those, if you're brining your kids, Xpu Ha is the place to go--totally kid friendly. It's an all inclusive, so no worries about spending more than you intended. Many trips to local attractions are included, like an air conditioned bus ride to Tulum, to port to ferry to Cozumel, etc. You may request a lower level room in their 2 to 3 story bungalows, so that you get the best of the AC and the least effort to get to your room. They have a motorized shuttle system that runs throughout the day from many, many stops through the resort. Also, they offer free bicycles for you to use if you want to get places quickly on your own steam. At the Aventura site, it's adults only, but the same deal with free shuttles. Also, you can call for a ride and they'll come pick you up with a golf cart styled car. They have a large indoor gym and pool, as well as outdoor pools, swim up and also poolside service where they'll bring you water, etc. They have a limited menu for 24 hour room service, but they'll bring you as much bottled water as you like, and again, they'll pick you up and drive you to any of their restaurants. We found the staff to be exceptionally helpful. I you want to check it you, you can go to palaceresorts.com

Hope you find a great travel location--and let us know if how it works out for you.

Nina

[dawn]

HI,

When I was younger and the boys were little, we would rent a motorhome for a couple weeks. It worked out well. You can rest when you need to, and if they wanted to do something I just stayed back and napped.

Now this summer I'm planning to go to Seattle with my 15 year old (we live in Wisconsin) we are going by train. I got a sleeper room. It's only a 2 day/night trip, hope it works out Ok.

Good luck.

Dawn

[taylortotmom]

Last April, I was extremely symptomatic and still made it to Disney World with a husband and two kids in tow. We travelled by car which was an eight- ten hour trip (one-way) for us. Here is how I was able to do this while very, very sick: #1- knew there would be no way to do everything I wanted to do so decided what one or two things were most important to us each day and planned our days around that activity; #2 we had two- three hours of down time in the hotel each day (rest and cool off in the pool during the hottest part of the day); we stayed on the Disney resort so the Hotel was just about as much fun to the kids as the actual parks!; #3 I had a water bottle in my hands at all times, #4 stayed off any ride that would flip me upside down or otherwise throw my equilibrium out of whack; #5 ate consistent meals each day even when it wasn't convenient, #6 enjoyed being with my family as taking my children to Disney World was a dream come true for me. As others have mentioned, you might want to get a wheelchair for use on vacation even if you don't normally require one. I did not but I know Disney specifically will do whatever necessary to make sure visitors with disabilities have a great vacation. We had a fabulous trip and hope you don't let this terrible illness keep you from enjoying life!

Carmen

[Ernie]

Hi,

You can rent a motor home and visit place which have A/C in the summer. You can tour around Canada in the Spring and Fall because the temperature is cooler.

Ernie

[KathyP]

Hi Diana;

I don't know how much your husband likes to drive, but my favorite vacations, with my family have been ones we traveled by car to see sights. My husband loves to drive and go on road trips.

We prefer renting a car to do this, with unlimited miles. The cars are usually brand new and it will save on the wear and tear of your own vehicle. They usually have great running air conditioners in them also. This can be the least expensive way to vacation. We stay in hotels with swimming pools and free breakasts (so you don't have to rush in the morning).

If you live on the East Coast:

A great family destination for this type of trip is Gettysburg PA. There is no time limit, go at your own pace, and walk as much as you want. There are cassette tapes available, at stores in town, to take the battlefield tour in your own car. Very educational!!

In the same vicinity is Lancaster, which is Amish country and, of course Hershey. Eventhough you can't eat much chocolate with dysautonomia, you can at least smell it when you enter the town. And Hershey Park would be great for the kids. I do know that Hershey Park is wheel chair accessable, and may even have them available.

My favorite place out west would be driving around the Black Hills of South Dakota. There is alot to see out there. We were just there last summer. All the sights are easy access. There is Mount Rushmore, Crazy Horse and Deadwood. There are also many other sights to stop and see along the way. I do know that the farther north you go the cooler the temperature.

I have alot of problems with fatigue, and anxiety, and these 2 place were no problem for me. My family and I travel this way alot to see the many sights in the US. I hope you find an enjoyable vacation you will cherish for a life time. HAPPY TRAILS!!!

KathyP

[shelby]

Hi,

A friendly vacation for POTS? Hmmm. I am taking an anti friendly vacation to Arizona. I would think that a cruise to Alaska would be good. Or a trip up to Canada. Some can't fly, but I have never had a problem with it.

Roselover, you can take wheelchairs on the plane. I took my own when we went to Hawaii. The good thing about it is that you get on the plane first. No waiting. There are advantages to everthing. Especially if you fly Southwest because they don't assign seats.

Shelby

[MomtoGiuliana]

Great comments. I'll just add that most National Parks, maybe all, are required to have many areas accessible by wheelchair and even provide wheelchairs. At Assateague Island National Seashore, near me, they even provide wheelchairs specific for the beach--for free (once you pay the nominal entrance fee). There are also wheelchair accessible trails through the marsh and forest as well.

I wouldn't recommend the beach here in the heat of summer, but spring or fall is very pleasant.

RV camping is also available at most National Parks, btw.

Katherine

[yogini]

Do you have any friends or relatives who live in places where you'd like to visit? Other than my trip to Mayo, the only vacation I've taken in the past year was a trip to visit friends in Los Angeles. It was really great to be able to stay in someone's home, because it is easier to get comfortable. (Got off the plane and went straight for the grocery store to buy my gatorade and soup!) I found that I was actually able to be a lot more active than I normally am, and I didn't crash when I got home. The trip went so well that I feel a lot more comfortable now with the idea of another vacation where I would stay in a hotel, or even in another country.

I agree that Canada and Alaska (really anywhere north) are great ideas. It is funny how our expecations change. I traveled all over the world before POTS, but now I'm just happy going somewhere in the plain ol' U.S. that doesn't trigger my symptoms! I love amusement parks, but it may be better to go in the off season - cheaper, cooler and less crowded.

Have a great vacation, whatever you decide. A break and a change of scenery can do wonders!

[ethansmom]

One thing you can do if you want to fly or drive either one, would be an all inclusive resort/spa package at a place where they have LOTS of activities for kids (pools, or a beach nearby so you'd have easy access to your hotel room if you needed to rest or cool off). I would LOVE to go to a hotel & spa where I could get massaged and pampered and order room service...but be on vacation at the same time and be able to go out a little and do other things.

One trick I've learned is that for all the activities you do on vacation, make sure you rest just as much the next day so you don't get sick while you want to be having fun. I try to keep up with everyone else and end up worse off than I would like...but if I get good amount of sleep and don't over-do it when I become symptomatic, it's much more enjoyable!

Let us know where you decide to go!

[MightyMouse]

I just wanted to clarify--spa treatments are not included despite the name "aventura spa palace". It only includes food, beverages and transport. I spent most of my days outdoors--even though it was hot, it wasn't humid, and because the properties were on the ocean, it was always breezy. The properies were pristine and the views were lovely.

I spent most of my days in a shady spot by the pool, or under a beach umbrella on the protected beaches. The pool's edges has a ledge that allows you to put your lounge into the shallow water, and stay outside with your feet and hands in the water. We did go horse back riding on one day that was cloudy and a little rainy--perfect for me. I also went to Tulum on very, very hot day with my "personal cooling" thing from Sharper Image. Ugh. I lasted about 40 minutes with extra water and my useless cooling device, but got so overheated that I went back to the airconditioned bus and rested while everyone else continued their tour.

One of my favorite things is to go snorkelling--they give you all the equipment...and when I get tired, I just go back to my lounge chair in the shade and have more water or a fruit smoothie.

Nina

[DawnA]

Wyoming is a nice and cool place to go. A motorhome home through Teton Nat'l Park and yellowstone sound good to me.

Yes you can take your W/C on the airplane. You do not even have to check it in with your regular luggage. Like a stroller...you check it in at the gate.

Dawn A

[BuddyLeesWife]

Windermere House in Windermere Ontario is my husband's favorite vacation spot - we spend a week there every September ( www.windermerehouse.com ). It is a great spot for outdoor activity (golf, swimming, kayaking, boating, biking, hiking) and equally great for just hanging out on the veranda to enjoy the view and chill. They have a great pub/restaurant with casual fare, fantastic gourmet dining available and there are cottages available with kitchens and grills. During the summer months they have full and 1/2 day supervised kids activities. There are some resort towns nearby (Port Carling, Bala, Bracebridge, Hurntsville...) that you can visit for shopping but there is really nothing else in Windermere itself

The inn is only open from Mid-May to Mid-October and my suggestion is that you avoid the months of June and July as the blackflies are nasty during that time. Windermere is a 2+ hour drive north of Toronto in the Muskoka area (Ernie, if you haven't been there you should definately visit). I love this place!!!!!!

[dianaD]

Thank you everyone for the suggestions! We have two kids, 7 and 8, and I'm not sure if we'd fly or drive. Frankly, both seem kinda hard right now.... We live in Texas, and it is HOT here, so going north sounds great. The spas sound wonderful, too. Thank you for your suggestions and for giving me encouragement that a vacation IS still possible!