DSM3KIDZ Posted March 6, 2007 Report Share Posted March 6, 2007 Hello, I leave for Florida on Sun and will be there for 7 days. I am so nervous. I planned the trip when I was feeling better and lately I've been feeling sick and don't know if I can handle a big trip. My parents took off of work and everything so I can't cancel,,,,,,,,,,,,,plus the kids are way to excited.Anyone with POTS been through Disney world and if so any valuable suggestions for me. I already assume I might need a wheelchair since I can barely walk a mile but I'm going to do everything to avoid it.How about flying any suggestions?Dayna Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 6, 2007 Report Share Posted March 6, 2007 We went to Disney world a few years ago. You can rent a wheel chair at the front gates of Disney. It was very helpful for me. We stayed on the resort property, so I could go back and rest as needed. Luckily my husband is a good sport and would take the kids in the afternoon while I rested in the hotel room. I tend to get sick on airplanes, so I take a lot of airborne and suck on cold ease tablets to prevent a virus. I also wear a mask on the airplane to help protect me from getting sick. I took something to help me sleep while I was away. I tend to do better if I can get a good nights rest. You can bring backpacks into the park, so I would suggest bringing a few water bottles. You can refill them in the park. I only went on the very tame rides, because even that would cause issues. I hope you can feel well on your trip. Rhonda Quote Link to comment Share on other sites More sharing options...
AJVDK Posted March 6, 2007 Report Share Posted March 6, 2007 Hello,I wanted to say I hope you have a great time. I was there in the sping of 2005. What I can say is drink plenty of water, and take lot or breaks, and rest when you can so you don't over do it, as its better to be down a hour or tow then make yourself sick for a few days of the trip. A wheel chair would be a great idea, plus you can attch all you bags to it!Have a great trip, When you get back you will have to tell us all about it! Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted March 6, 2007 Report Share Posted March 6, 2007 Hi Dayna,I've never been to Disney World..or on a plane for that matter, but I wanted to wish you the best of luck and I hope you have a safe, fun trip. I agree with the others about bringing lots of water, and why not use a wheelchair, save your energy so you can feel good for the 7 days, or atleast feel somewhat decent. Get lots of pics for us!!! Have fun! Jacquie Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 6, 2007 Report Share Posted March 6, 2007 How about using an umbrella to protect from the heat of the sun? I just bought a sun-reflective umbrella that I plan to use all summer because last summer's heat was really difficult. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 7, 2007 Report Share Posted March 7, 2007 Disney suggestions:pack snacks, water, bandaids(for the kids), maybe take a seat cane if you choose not to use a wheelchair, take the "line" on the left it is usually shorter than the lines on the right....hat, sunblock, pocket rain ponchos (in case of sudden downpours)flying suggestions: water, water, compression pantyhose, loose fitting pants and sneakers. sweater...Have a great, fun time!When you need to rest, do that too!tearose Quote Link to comment Share on other sites More sharing options...
bren62 Posted March 7, 2007 Report Share Posted March 7, 2007 Most of the parks have electric scooters for rent which are nice. If you decide to go on any rides use the handicap entrance. Most of the rides and shows have one, just look for the sign. The wait is shorter, you can take the scooter or wheelchair in that way for a lot of the shows. Your family can go with you through the handicap entrance so you can all be together. Six years ago my mother went with my family to Disney World. She had had a stroke and required the use of an electric scooter. We all used the handicap entrance for the rides and shows she could go on or see. It was so nice, not long lines, and the staff was extremely helpful. Have fun and good luck on your trip!Brenda Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 7, 2007 Report Share Posted March 7, 2007 Dayna-You've already gotten excellent advice. Relax and enjoy yourself! Big hugs-Julie Quote Link to comment Share on other sites More sharing options...
Foxyblue Posted March 7, 2007 Report Share Posted March 7, 2007 Hello! My family and I are going in May so thank you for bringing this topic up. I'm right there with you about being nervous! I have been worrying about the heat, the walking, etc. I have thought about paying attention to where the benches are, lol, packing water bottles and possibly a cold pack to pop on your neck in case you feel so flushed you will faint. Also, pack a really salty snack. The salt does help sometimes with me I have noticed. Hope this helps and I hope more tips keep coming in....for the both of us! Please tell me how it goes when you get back!Thanks, Bri Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 7, 2007 Report Share Posted March 7, 2007 Hi Dayna,You've gotten some good advice here, but I'd still like to add my 2 cents. So for what it's worth, here's how I see it:There are only 2 perks that I know of to having dysautonomia. One: the registration fee for a car with disabled license plates costs much less than the regular fee (and in some states it is free!). Two: If you're in a wheelchair you can skip the long lines at Disney World and other amusement parks.So, I say, if a wheelchair will help you, use one! It can be hard at first to admit that you need the help and to accept it. But being able to ride around the park and not having to stand in long lines in the heat will probably make the day much easier. Using a wheelchair could make the difference between having to go back to the room early vs. staying in the park with your kids. And even if you still have to go back to the room early, at least you'll be able to make more of your time in the park since you wouldn't have to spend so much time in line. Also, make sure to brink lots of packets of electrolytes to add to your water. Packets will be lighter to carry around than Gatorade, but will be able to help you stay hydrated much better than water. As for the flight, make sure you have electrolyte packets there too that you can add to your water. I'm not sure if you're allowed to carry Gatorade on board. I haven't flown since the new restrictions with fluids. Also, if you don't already have a good pair of compression hose, you should probably think about buying some even if you can only get knee highs. They'll be better than nothing and will help to keep blood from pooling in your legs while you're sitting. They'd be a good idea for Disney World too.I hope that your trip goes well and that you have lots of fun!!!!Rachel Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted March 7, 2007 Author Report Share Posted March 7, 2007 Rachel where would you get electrolyte packets?Dayna Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 7, 2007 Report Share Posted March 7, 2007 Dayna,Tearose is the one who taught me about electrolyte packets. I haven't found the ones she uses yet, but you can check in the baby section of a pharmacy for Kaolectrolyte or LiquiLalyte. These packets are made for children who get dehydrated and they don't have as much sugar as Gatorade does. I found some electrolyte packets at a Super Wal-Mart next to the Gatorade and Crystal Lite packets. The brand I bought is Propel (by Gatorade). 10 packets came in a small box. One packet mixes into 16 oz of water. There are some other brands too, some of which are artifically sweetened if you prefer that. If for some reason you can't find the packets, perhaps you can measure out some Gatorade mix into snack size Ziplocs and tuck that in a purse or backpack. Hope that helped!Rachel Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 7, 2007 Report Share Posted March 7, 2007 You can usually find electrolyte packets at a health food store. I get the non-sugar ones made by the Emergen-C company, or if you want the vitamin C, you can simply use the Emergen-C--same electrolytes. Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 7, 2007 Report Share Posted March 7, 2007 Thanks, Sushi. I will have to check out those non-sugar ones. I don't really like having sugar on my teeth, but I also don't want aspertame. My sons doc highly discourages the use of aspertame, especially if you've ever had any kind of seizure. So I'd like to have an electrolyte packet without sugar or aspertame.So the Emergen-C packets have the same electrolytes as Gatorade, they just have Vitamin C added too?Rachel Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted March 8, 2007 Report Share Posted March 8, 2007 Everyone has given you great advice so all I'll say is to have fun and Good Luck!!! Quote Link to comment Share on other sites More sharing options...
flop Posted March 8, 2007 Report Share Posted March 8, 2007 Oooh I'm so jealous!I can understand that you must both be feeling apprehensive but I'm sure that if you follow all of the above advice that you will have a great time.I know I have been talking non-stop about wheelchairs recently but I would definitly take/hire one. If you want to walk for a bit load all of the backpacks / emergency supplies onto the chair and push it. As you know waiting in line is about the hardest thing for us to do so certainly don't feel guilty for getting in the wheelchair and using the disabled enterances to rides. They are there to help you and blacking out whilst waiting in line will spoil the trip. Take advanctage - it's not often that you get perks and the kids will love being able to fit in more rides than normal families!Just listen to your body and take a rest when you need to, after all you will need to be up for the night time fireworks!Maybe one day I'll get over to the USA for a visit or even to Disney Land in Paris which is rather closer for me!Flop Quote Link to comment Share on other sites More sharing options...
becky Posted March 8, 2007 Report Share Posted March 8, 2007 Have a fabulous time!i went to disney in paris just before christmas and took my wheelchair but then i found out you can hire them - make sure you tell them at the front desk that one of your party has a whhelchair so you can all queue jump! there is still a queue at the disabled entrance for rides but not as long as the normal one. Also beware of tram tracks, my mum got me and my wheelchair stuck down these loads! great fun!have a great time. x x x Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted March 8, 2007 Report Share Posted March 8, 2007 We went to Disney 2 years ago in December so that it was a nice comfortable 70 degrees in FL. There is no way I would be able to go down there in the summer. I took drinks in my backpack, rested frequently, and we always went back to our hotel in the afternoon to give our girls a nap...so I got to rest up then before we went back out. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 9, 2007 Report Share Posted March 9, 2007 If you have time, pick up a copy of the Insider's Guide to Disney World. They tell you all sorts of great tricks like which park to go to on which day and how to make your way through the park to avoid the lines and crowds. These days I think there is a way to reserve your spot on rides so that you don't have to wait in line at all for some of them. I miss Disney World! I haven't been there in ages, but have many great memories of going there with my family as a kid. Enjoy your trip! Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted March 9, 2007 Author Report Share Posted March 9, 2007 Thank you everyone for all your great ideas and warm wishes for a happy trip. It might be exhausting but just seeing the kids expressions and excitement is well worth it.I'm leaving on Sat at 2 in the morning to make it to the Chicago airport by 4:30 because our flight leaves at 6:00. Hopefully the kids will catch their zzzzzz's on the flight.Thanks again and I'll post on how everything went.Dayna Quote Link to comment Share on other sites More sharing options...
masumeh Posted March 9, 2007 Report Share Posted March 9, 2007 Didn't read all the others...so sorry if this repeats previous ideas...Just one big one: If you have sound sensitivity (like me), don't forget the EAR PLUGS! Quote Link to comment Share on other sites More sharing options...
Eli6596 Posted March 18, 2007 Report Share Posted March 18, 2007 If no-one else mentioned it, a cooling vest might be nice if you are going to be outside in the heat. Let us know how it goes for you. I want to go there with my husband, and two children one day. I am afraid of not being able to handle it and spoiling it for everyone. Karyn Quote Link to comment Share on other sites More sharing options...
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