Stitch's Great Adventure- I was told that my headrest which is curved, contoured and extended length would be in the way as well as my batteries and ventilator that is mounted low on a custom built tray behind my batteries. It probably depends on your equipment.
Ellen-I have ridden this in my wheelchair before which was why we were so upset. Dad even offered to take us out of gear and push us...
What kind of MD do you have?
That is a good question! They are guessing some severe kind of Congenital based on my family, that it was present at birth, hip dislocation, missing reflexes, and missing brain (white matter and corpus collosum) but an old muscle sample said it wasn't Ullrich or merosin deficient??? I have progressed very quickly. I always used a stroller or
scooter outside the house-I could penguin walk about 25 feet but was always falling-got stitches seven times. Never ran or jumped. I have always had severe contractures. By age 9 I was doing the transfers you are talking about. By 11 I had to be lifted. Started using a bi-pap at night at age 10, switched to a ventilator through a mask at 12. I know the compensation movement that you are referring to using your stronger muscles to help the weaker. I was involved in a lot of fun activities in school-academic team, band (bells), choir, competitive speech, honors/AP classes, church plays. My scoliosis surgery to fix my 125 degree curve at 17 really knocked my body for a loop as I had every possible complication. I also have other conditions seemingly unrelated to the MD like Gastroperesis, mild Reflex Sympathetic Dystrophy. I am 22 now. I don't eat by mouth between the gastroperesis and weak swallow. All my food is delivered via tube feeding in my jejunum 24/7 on a pump. I have a GJ tube- g is a drain, j is for food. I am basically stuck in a sitting position with a lot of contractures and weakness-what you see in pictures is what you get. I am using an on screen keyboard. I have a trach and use a ventilator part time...I really understand the frustration of lost abilities BUT you can adjust and find fun things to do. I am fortunate to be small enough to lift (70 lbs).
I am way too unstable to ride Expedition Everest or any ride but Soarin'. Here's how we did it. Cast Members request that you park by the pole and walk (or are carried) the few feet to your seat. They will allow you to park right next to the seat and move your chair if you request it. Since I have breathing problems, I pulled the seatbelt all the way out looped it around the armrest (a tip I got from the Pooh sized thread). I was completely secure. I also used the strap between the legs for extra security. Grandma held my right arm and Dad was on my left with an arm in front and an arm in back. I was very secure-no problems-and I cannot sit up in any chair or surface (besides my wheelchair) without being held up. DO NOT ask if you can have a family member support you on the ride (made this mistake at DL). Soarin' -easy transfer, gentle movements, lotsa fun!
I did try Haunted Mansion at DL. It was a difficult transfer for me because Dad needs enough room to stand in front of the seat to put me down-I can't use sliding boards because I have no balance and very little trunk control or strength. The ride itself is pretty jerky, tips you back, and I had a hard time seeing. We decided the transfer was too difficult for our WDW trip. However they did just remodel it...
Sue-thanks for the trip report compliments.
