going to FLorida

    • Anonymous
      April 2, 2007 at 12:15 pm

      Hello i am going to Florida for a week in june with my teenage daughters!!!;) I am excited and scared. ever since I have gotten CIDP I am unable to keep up with everyone. My husband has made it his mission that we will take one week a year out to go have some family bonding. I guess my illness has brought out the man who used to be a big part of the family then he got caught up in work or just life and let things go by the wayside. well there are good things that come from this disease this is one. it is a 3 hour flight and then there are so many things to see and do in a week any suggestions on the things we can do I can figure out how to make them work for all of us.I need to have a budget friendly plan and help with ideas on fatigue, swelling. I can maintain the pain I know when to stop and get off my feet I will push it cause this is a special trip for me too..and i am trying to get my doctor to get another ivig treatment before we go..

    • Anonymous
      April 2, 2007 at 1:01 pm

      Congrats on your vacation. Florida is a big place. Do you know whereabouts in Florida you will be?

      this site is pretty good too

      try AAA and pricegrabber for discounts

      Hope you have fun!

    • Anonymous
      April 2, 2007 at 1:58 pm

      we are going to orlando and then we have a rental car to go where ever we want to i hear it is expensive nad they take advatange of tourists i hope this is not true but would like to be aware of things to look out for

    • Anonymous
      April 2, 2007 at 1:59 pm

      I live in florida. Where in Florida are you going to? I live near Orlando.
      June is one of the hottest months so come prepare for the heat…

    • Anonymous
      April 2, 2007 at 2:14 pm

      I am actually looking forward to the heat for a while we have just gotten another foot of snow here..

    • Anonymous
      April 2, 2007 at 5:48 pm

      I have CIDP and I have traveled on vacations. You should do fine with the plane flight. I can do very limited walking with a walker and I was even able to get into the bathroom:D If it’s possible, have your IVIG re-scheduled a day or two before you leave. Use your search engines on Orlando, so you can get an idea now what you’ll be able to do. If you’re going to disneyworld, look that up on google or goodsearch, I’d try putting in something like wheelchair friendly Orlando or wheelchair friendly disneyworld for ideas.

    • Anonymous
      April 2, 2007 at 8:19 pm

      As a rule everyone that travels from Nebraska has to stop in Pittsburgh! How about adopting me while you are here! LOL I have many friends in Florida and we have a trip planned for next February. I am going to make sure I check into a wheel chair or some kind of motorized rental so I can be independant.

      First call in advance to the airport and tell them you will need a wheel chair from the car to the gate and also when you get off the plane to the car rental if you don’t have your own.

      I plan on having one for times when I can conserve energy, which is no different from here at home. I use them durning the week at most of the big stores and when there is going to be alot of standing. I also would suggest if you have not already obtaining a handicap parking tag for energy conservation too! Just these little suggestions willl help you enjoy your vacation.

      If you are not going to stop and get me…..just wave as you fly over Pennsylvania.

    • Anonymous
      April 3, 2007 at 10:45 am

      i would love to pick you up!!! never been to pittsburg either that would be a another great vacation!

      I am getting really excited to go I am going to be getting a another IVIG treatment right before we go.

    • Anonymous
      April 3, 2007 at 12:54 pm

      I’ve vacationed with my husband and son, both pre- and post-CIDP. We always felt compelled to be doing something at all times. Our post-CIDP, pre-treatment trip to Wash DC was a nightmare! But in January we went to Honolulu and, for once, I made it a priority to spend some time doing nothing. It was great!!! My son (11 yrs) was just as happy to hang at the pool, and my husband did a few things on his own (like hiking to the top of Diamond Head — no way would I try that!). We still saw some sights, saw a show, ate out, but the doing nothing part was the best. I even fell asleep in the shade by the pool — heavenly! I know there’s a lot to see and do in Orlando, but your vacation doesn’t have to be a marathon to bond and have fun.

      PS. On the trip home I noticed I was grinding my teeth again — I didn’t even know that I had stopped!! Now that’s relaxed.

    • Anonymous
      April 3, 2007 at 2:44 pm

      when you check into the parks tell them you need a wheel chark and are disabled. in calif the let you and ond other person go to the front of the line for rides . it make your time in tha park alot easer , and syou cad do more with less stress on your body:D

    • April 3, 2007 at 4:43 pm

      Hi as the last person mentioned, you can get to the front of the line w/wheel chair. In addition, if you are flying sw airlines, request preboard to guarantee a good seat as well as for any other airlines that do not assign seats. I left you my # in your e-mail for some other things I learned on our trip to the Bahamas last week. dawn

    • Anonymous
      April 3, 2007 at 6:44 pm

      Come on down! The theme parks (Disney, Universal, Sea World, Busch Gardens) usually have wheelchairs – I’d check online or call them to make sure. Other places you might enjoy: St. Augustine, the oldest city in the U.S. – you can easily tour the city by car or horse-drawn carriage (pricey). I recommend the Columbia Hotel for lunch. It has Cuban sandwiches, bean soup and the BEST 1905 salad I’ve tasted. They also have Chicken with Rice and Peas and other Cuban dishes – oh! – the Cuban bread is delish! Don’t forget Daytona Beach – you can drive right on the sand (for a minimal fee), park there and swim right out of your car! Further south there is Cape Canaveral and the Space Center that is interesting. It’s true that some of these are tourist meccas, but I suggest you stop at a Florida Welcome Center and get a lot of brochures – they have coupons in them, too! Have to put in a plug for Gainesville – HOME OF THE UF GATOR NAT’L CHAMPS IN FOOTBALL AND BASKETBALL!!!! Hope you have tons of fun. Just bring summer clothes and sunscreen! And rain gear! It may rain every day, but not all day! Good luck and good health!

    • Anonymous
      April 4, 2007 at 2:35 pm

      Hello Not sure of how much you can do or how long you can ride in a car. But its worth it if you can go to the Keys. Its about a 2hr ride from Orlando. Its a beautiful trip and the Keys are nothing like the main land of Florida. Its pricey down there but its something you’ll never forget. Let alone want to go back to. I lived there (as a teen) and have an Aunt who lives in Marathon. Key West is cool it all is down there. Anyway just have a good time. Dawn

    • Anonymous
      April 6, 2007 at 7:27 pm

      Hello, We live in Ft. Myers, Florida. My daughter and one of my sons just got back from the beach. He said brrrrr the water was a little cold. It was very hot today, but it is suppose to drop to 47 tonight. WOW!!! I’ll have to put blankets on the horses. Your coming just before the rains come. In the summer it rains every door, very short, but the humidity afterwards/ awful. Actually AUGUST is the HOTTEST 😮 month. Orlando has lots and lots and lots to do and see. I’m sure you’ll have a great time. Tampa isn’t to far and it also has several thing to do, but you’ll probably be soo busy in Orlando, won’t have time for much else. Sea World is great. INTERNATIONAL DRIVE is the main strip!!! It has everything.
      HAVE FUN,

    • Anonymous
      April 7, 2007 at 6:44 pm

      Nebraskafan, hope you have a great time in Florida. We actually enjoyed Epcot center a lot more than Disney since we didn’t go with little kids (years ago). Univeral studios was really phantastic. I’ll never forget that experience.

      During our trip this year to Thailand I requested a whelchair which was a godsent as slow as I am. In Taipee we would have missed our connection if I wouldn’t have had a wheelchair. Back in Denver the people from Frontier were really great. Our plane was late coming in from San Francisco and we only had 20 minutes to catch the very last limousine to Fort Collins after midnight. They had a wheelchair `waiting at the plane exit and on their walky-talky ordered an electric cart to take over at the gate. Then back to another wheelchair already waiting for me to get me to the terminal. The lady with the last one pushed the wheelchair so fast Carol had a difficult time keeping up. We skipped picking up our luggage and got it a few days later when we had to go back to Denver for my neuro and IVIg appointments. But we cought the limousine with only a couple of minutes to spare. We got home at about 2 a.m. totally wiped out. 😀

      We also checked in my rollator without any problem – even on a propellor plane to Laos. Without it our trip would have been a disaster.

    • Anonymous
      April 8, 2007 at 6:38 pm

      [QUOTE=Dawn C]Hello Not sure of how much you can do or how long you can ride in a car. But its worth it if you can go to the Keys. Its about a 2hr ride from Orlando. Its a beautiful trip and the Keys are nothing like the main land of Florida. Its pricey down there but its something you’ll never forget. Let alone want to go back to. I lived there (as a teen) and have an Aunt who lives in Marathon. Key West is cool it all is down there. Anyway just have a good time. Dawn[/QUOTE]
      Totally agree about the Keys. I stayed in Islamorada a few years back. This time I’m making my wife get swimming lessons before we go back 🙂 I bought her a swimsuit and am calling the YMCA to sign her up this week so we can go down in a month or two.

      Also see about a condo vacation rental, they can be alot cheaper than a hotel.

    • Anonymous
      April 9, 2007 at 2:11 pm

      When you flew international did you encounter any problems taking your medications on board? I am flying out of DIA to Mexico and will need to hand carry mine, especially the pain killers(opiates). Should I anticipate trouble here or in Mazatlan and what can I do avoid it? Anyone??
      Thanks. Morris

    • Anonymous
      April 9, 2007 at 7:41 pm


      My best friend just got back from Orlando last week. Disney now requires a doctor’s note for a wheelchair or motorized vehicle (like they do with the handicapped parking tag for the car) but that should be no problem. Her daughter broke her leg and was in a boot during their Disney trip. They didn’t have to wait in many lines since the wheelchair was being used. They also called ahead and had a wheelchair waiting at the airport for when they arrived and changed planes in Atlanta.

      Erica said the one thing to watch for is that not all restaurants are handicapped friendly.

      I have recently come to grips/learned that I need to conserve my energy. No more being brave for me. If I can use the chair when we go to larger stores or have outings with the kids, I use it. I’d rather be able to enjoy myself than to walk and be miserable and not be able to do anything for a period of time.

      Downtown Disney is great and has little shops and restaurants. You may just enjoy laying by the pool in the nice warm weather. That sounds wonderful to me, can I come too?