Pop Pop has ALS..disney help!

[ppan77]

My dad was diagnosed in the spring with bulbar onset ALS. Which means it is affecting his speech and swallowing. He still golfs a 79 We have a very short trip planned mid October. Three nights. One day at MK with Halloween Party at night. One day at Animal Kingdom. Right now he can not talk while he eats and must sit down and eat to concentrate. I am trying to book a lot of sit down meals. Any suggestions? It is scary to think I may do all this reservation planning and he may be on a feeding tube by then. Just trying to get ducks in a row. Staying at POP. We will have our car to drive us.

 

[jmartinez1895]

The main things I would suggest based on what you said would be to book the reservations for times that are not main meal rush times. Such as early or late dinners, brunch instead of lunch. That way you will not be so rushed my the wait staff and he can take his time. The other thing is I would think twice about booking a reservation with a buffet. In the event that he is on tube you can still go to TS locations and he will not be charged and the rest of your group can enjoy a meal. If you do a buffet or show there is a strong chance they will charge even if a person does not eat.

 

[ppan77]

Thanks! I am booking some "brunch" buffets. I might have to tweak our schedule as we get closer.

 

[eternaldisneyfan]

Definitely plan to use the wheelchair. Disney is humongous. Also make ressies on off times 11:00, 4:00, 2:00, 7:00,9:00, etc.

I have Muscular Dystrophy also and you can have a great time. Just prepare and plan & take it easy

 

[poohguys]

Did you ask him if there is any place special that he would like to eat at? I hope that you all have a great trip!

 

[kerstfan1]

i would make reservations with in mind that he has a tube

a former co worker of mine was diagnosed with als in febuari '10 and in october she was on a tube

 

[ppan77]

He just saw his dr at Duke who definitely wants him to have a scooter to conserve energy at WDW. Visibly he does not look sick but he is losing weight and needs to maintain it while on our trip. He is getting the tube after disney. What is the best way to get a scooter? He will not need help transferring into rides.

 

[eternaldisneyfan]

The best way to get ascooter is off site. Many people use Randy's. Make sure you are on site or the scooter will fit in the car and someone can load it in the trunk.

Sometimes Disney runs out of scooters and there is always a line so if you can transport it get it.

 

[ppan77]

Dad gets his feeding tube after Disney. I planned some late brunches so we won't be too rushed. He is taking his supplemental shakes with him as well. He will be renting a scooter and getting a GAC. We do have 8 ppl altogether. Most thrill rides will only have 5 or 6 riding. But I am worried that in Fantasyland we will all want to ride together. Will they allow us to all go together with his GAC? A little stressed if we have to manage FP too! It's my family me, DH, dd4, ds7, and Grammy, Pop Pop, my SIL, and my brother.

 

[lanejudy]

Dad gets his feeding tube after Disney. I planned some late brunches so we won't be too rushed. He is taking his supplemental shakes with him as well. He will be renting a scooter and getting a GAC. We do have 8 ppl altogether. Most thrill rides will only have 5 or 6 riding. But I am worried that in Fantasyland we will all want to ride together. Will they allow us to all go together with his GAC? A little stressed if we have to manage FP too! It's my family me, DH, dd4, ds7, and Grammy, Pop Pop, my SIL, and my brother.

A GAC will only allow 6 members of your party to enter together, the rest will need to do the stand-by line. While WDW does occasionally waive that for specific parties larger than 6, it's usually when there are several young children and splitting up could be a challenge. Since you only have 2 little ones and 2 "older" adults, it's not likely WDW will waive that because you have 4 adults in the party. Just plan to split before arriving at each attraction and maybe try to rotate who gets to go with Pop Pop.

Use Fastpasses and a touring plan will be your best strategy to get through the parks with less stress.

Enjoy your vacation!

 

[M5ward]

Thanks! I am booking some "brunch" buffets. I might have to tweak our schedule as we get closer.

If you get an ECV, you do not need the GAC. The scooter actually serves as your GAC. Most lines are handicapped accessible and he can take the scooter all the way through. That way you all stay together.

 

[dvc one day]

I am also concerned about the strategy of keeping everyone together this trip because it's the first trip i have gone with more than six people. I'm not sure I will even get a GAC this time. I am going to try to get everyone to the parks early when possible, but I feel like there will be a lot of one part of the group waiting for the other part. So I guess my advice would be to just stay flexible and be happy with what happens, which is what I hope to do.

When I first read your post over a month ago, I avoided posting for some reason. I'm sorry about your dad. My grandfather was diagnosed with ALS in October of my first year in college and died the next May (we were close. I was his first grandson). Not surprisingly, I did poorly is school that spring semester. He loved golf also. I remember almost everything about those last few months. Sorry if this was not something you wanted to read, was just remembering that time.

I think this trip is a great idea and will be great and will be a great memory.