thecoilofsihn
Earning My Ears
- Joined
- Oct 24, 2012
- Messages
- 1
This is my very first post but, not my very first visit. disboards.com has been ESSENTIAL to all of my Disney trip planning over the years. Now, we have a power chair and in June 2013, we are going on our 2nd Disney Cruise and visiting Disney World.
I have read through the disABILITIES FAQ partially(Lots of awesome info there!) but, I have more of an emotional question:
Would it be better to bring a manual wheelchair to Disney World than a power chair?
My son, Alex, has Duchenne Muscular Dystrophy. He has been in his power chair since February, 2012, this year. Our last recent previous visits, other than when he was really young(Alex is 14 now), we have used various manual chairs because he could not walk the long distances because he was still ambulatory. This worked out great as Dah-Dee(That's me
) could transfer him from chair to ride, where needed.
Now, Alex is a lot bigger. Since our last trip(2011) he's grown eight inches and gained more weight(65" inches tall and 208lbs currently). So, around home and school, the power chair has become an invaluable extension of his body(He calls it his Iron Man Suit
).
So, my concern is that if we bring the power chair, he will not have access to the rides that people in manual chairs can access easily. Like Toy Story in Hollywood Disney, we could get on that one NO problem. But, with his power chair (Pride Mobility Q6 Edge), I am afraid it will be too big to get on the "accessible" rides (Length: 35.6in(without footplates) Width: 24in.).
My gut tells me that we should bring a manual chair and I can get my awesome Disney aerobic/weight training workout with the high speed walking and transfers. But, I really want to hear from all of you about your feelings on this subject.
Also, I was thinking of purchasing a "lift vest" to assist me in getting him into rides like Star Tours. Then, at home before we go, we could practice using it with simulated conditions like the rides have. But, never having used one and not being able to get feedback from others about them, I am curious if anybody here has used them in general or at Disney.
You see, this trip is very special. Over this summer, with many trips to Children's Hospital to see various pulmonologists and cardiologists, complete with overnight stays, we have found out that Alex's heart is severely affected by his DMD. He has DMD related dilated cardiomyopathy with an ejection fraction of 12%. Alex's doctor has explained that at any moment, his heart could go into arrhythmia, which he would fall into unconsciousness and die. This could happen today or some future day.
So, I have arranged this trip so that our entire family is going together. I am a single parent with a frayed and almost non-existent support system.(Took a lot to get the whole fam together on this one.
) And I want it to be the best trip ever. I am sure the eyes that are reading this understand the emphasis when I type "best trip ever". For me, "best trip ever" means a trip that one, Alex will get everything he wants and can do as much as he wants. He does understand he is bigger and Dah-Dee is not Superman and cannot toss him around like a ping pong ball like when he was smaller. He knows that there will be some rides(Test Track - His favorite ride. Last trip nearly broke myself getting him in and out of the car. If only Disney would have a wheelchair van test vehicle that they could trundle out onto the track when people on wheels get in line, that would be AWESOME!) that he will not be able to ride.
Okay, I am going to stop writing now before this becomes a journal entry.
I have read through the disABILITIES FAQ partially(Lots of awesome info there!) but, I have more of an emotional question:
Would it be better to bring a manual wheelchair to Disney World than a power chair?
My son, Alex, has Duchenne Muscular Dystrophy. He has been in his power chair since February, 2012, this year. Our last recent previous visits, other than when he was really young(Alex is 14 now), we have used various manual chairs because he could not walk the long distances because he was still ambulatory. This worked out great as Dah-Dee(That's me
Now, Alex is a lot bigger. Since our last trip(2011) he's grown eight inches and gained more weight(65" inches tall and 208lbs currently). So, around home and school, the power chair has become an invaluable extension of his body(He calls it his Iron Man Suit
So, my concern is that if we bring the power chair, he will not have access to the rides that people in manual chairs can access easily. Like Toy Story in Hollywood Disney, we could get on that one NO problem. But, with his power chair (Pride Mobility Q6 Edge), I am afraid it will be too big to get on the "accessible" rides (Length: 35.6in(without footplates) Width: 24in.).
My gut tells me that we should bring a manual chair and I can get my awesome Disney aerobic/weight training workout with the high speed walking and transfers. But, I really want to hear from all of you about your feelings on this subject.
Also, I was thinking of purchasing a "lift vest" to assist me in getting him into rides like Star Tours. Then, at home before we go, we could practice using it with simulated conditions like the rides have. But, never having used one and not being able to get feedback from others about them, I am curious if anybody here has used them in general or at Disney.
You see, this trip is very special. Over this summer, with many trips to Children's Hospital to see various pulmonologists and cardiologists, complete with overnight stays, we have found out that Alex's heart is severely affected by his DMD. He has DMD related dilated cardiomyopathy with an ejection fraction of 12%. Alex's doctor has explained that at any moment, his heart could go into arrhythmia, which he would fall into unconsciousness and die. This could happen today or some future day.
So, I have arranged this trip so that our entire family is going together. I am a single parent with a frayed and almost non-existent support system.(Took a lot to get the whole fam together on this one.
Okay, I am going to stop writing now before this becomes a journal entry.