Eds

[pineapple515]

Originally Posted by Scaramouche

I completely get that. I'm 26 and it doesn't feel right because with EDS/JHS we look completely normal and until the pain kicks in - to the outside world there is nothing wrong at all. Honestly you could look at me now and you would have no idea that my back is in quite a lot of pain.

I don't get a lot of warning, I used to have about an hour between "it's really starting to hurt now" to "I can't move". I've now got about 30 minutes between "I think there's a bit of pain" to "I can't move". But there are times when I can get by for hours without any help of crutches/wheelchair because we take a lot of breaks. Other days, I can't get out of the hotel room without them!

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Thank you so much for your reply, it really keeps to have heard about someone in similar situation. He is same, he needs to be able to get up and move also so sitting in wheelchair all the time isn't best. I will ask about the DAS. He is like chemist as well, so will make sure he has letter from GP! Thanks again.

[pineapple515]

Originally Posted by Merryweather

Have a great time!

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Thank you!

[pineapple515]

Hi All,

Just returned from DLP and husband was a lot worse than he thought he would be. A scooter hire is definitely needed for WDW.

For airport assistance do I need to speak with my travel agent? We booked through thomas cook as my close friend got us a very good deal with discounts so it worked out same as booked separate.

Thanks again for all the help.

[Scaramouche]

Originally Posted by pineapple515

Hi All,

Just returned from DLP and husband was a lot worse than he thought he would be. A scooter hire is definitely needed for WDW.

For airport assistance do I need to speak with my travel agent? We booked through thomas cook as my close friend got us a very good deal with discounts so it worked out same as booked separate.

Thanks again for all the help.

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I believe you speak to the airline . I don’t bother with assistance in the airport but VA do always ask if I need anything etc.

Definitely get a scooter if he struggled with DLP. I struggled less this holiday because I was much less stubborn and alternated between wheelchair/crutches and legs.

Managed 9-2 in Animal Kingdom with just my own legs! Lots of sitting down needed but I was very proud. Spent the evening in the wheelchair though .