Please help me plan..

[Mr._The_King]

I am helping my best friend plan her first Disney Trip. She was recently diagnosed with ALS although we are exploring every option and getting 2nd, 3rd and fourth opinions. She wants to see her kids in Disney no matter how things turn out. We are planning for November. She will be with her Husband DD 1, DD 6, and DS 9. Right now, she is having mobility problems and we don't know what she will be facing in November since it has been only 7 months since her first symptoms appeared. She falls easily and has to walk slowly. What I am looking for from this amazing board is tips and things I can do for her and tell her to do that will make her trip enjoyable. I will not be on the trip. We are starting from scratch here so any help will be wonderful! Thank you
P.S. I am a woman, I stole my husband's id to write our trip report and now I am just keeping this id.

 

[Cheshire Figment]

Hi and to disABILTIES!

My first thought would be her using an ECV from an off-site company for herself. DD1 would definitely need a stroller with her husband (or DS9) pushing. DD6 should be able to make it without a stroller, but possibly looking into a double for both daughters.

They should get an idea of what parks they will be doing, and how many days at each. If they can afford it, I would strongly suggest that if they will primarily be at MK they look into staying at one of the monorail hotels. If they will be spending most time at Epcot and/or MGM they should look into either Y&B or Boardwalk.

If they cannot manage a deluxe, and have to stay at a moderate or value then there may be more transportation logistics problems, especially if an off-site ECV is rented. I don't know about planned sleeping arrangements, but the deluxe rooms have two queen size beds while the values and moderates only have doubles. Note that WL and AKL some rooms have a queen and a set of bunk beds which might help the sleeping arrangements, but again there might be more transportation problem.

And you (or they) might want to review the "disABILTIES FAQ" which is the first sticky at the top of this forum's index.

 

[Mr._The_King]

Hi and to disABILTIES!

My first thought would be her using an ECV from an off-site company for herself. DD1 would definitely need a stroller with her husband (or DS9) pushing. DD6 should be able to make it without a stroller, but possibly looking into a double for both daughters.

They should get an idea of what parks they will be doing, and how many days at each. If they can afford it, I would strongly suggest that if they will primarily be at MK they look into staying at one of the monorail hotels. If they will be spending most time at Epcot and/or MGM they should look into either Y&B or Boardwalk.

If they cannot manage a deluxe, and have to stay at a moderate or value then there may be more transportation logistics problems, especially if an off-site ECV is rented. I don't know about planned sleeping arrangements, but the deluxe rooms have two queen size beds while the values and moderates only have doubles. Note that WL and AKL some rooms have a queen and a set of bunk beds which might help the sleeping arrangements, but again there might be more transportation problem.

And you (or they) might want to review the "disABILTIES FAQ" which is the first sticky at the top of this forum's index.

I just got finished reading the FAQ's! Wonderful information. I learned a lot already. Your suggestion of a monorail stop resort is a great one. I had not even thought of that. She will need a ECV for sure. I really like the idea of renting one offsite. I am glad to see that they break down to fit in the car. Do you think they should bring their own stoller? I am torn between them renting one and bringing their own. I was new to the idea of a GAC and I think she should get one of those as well. Thank you so much for your response. I want to be able to present these things to her and her not having to stress over the details.

P.S. My Mom works as a greeter at Disney as well! I am going to use her resort discount for my friend.

 

[dclfun]

I have ALS also which is much further along in terms of progression. I travel now in a power chair on a ventilator 24/7, with a feeding pump and service dog. WDW is one place I know I can go where my needs will be met, both at the parks and the resorts. I have a dear friend who also had ALS who has passed away, but he was the father of 6 children and took them to WDW almost immediately after he got his diagnosis to make a memory with them. ( this is the reason why I wish there were wishes for adults- he fortunately could afford such a trip but most adults who are losing their independence and income cannot..but I digress). Ernie rented an ECV but found it difficult to use due to having to lean forward and also due to some issues with hand function. I know it's hard to predict your friends' function in November but definitely plan on at least an ECV. If she has one, she won't need a GAC as she'll be directed to the entrances where she can wait in the ECV until boarding. The other issue is that someone with ALS will tire quite easily so planning lots of breaks, relaxing in a pool or resting back at the resort is a good idea. I used to go to First Aid to take short naps and the folks there are very nice. For a resort, having alot of space would be nice. I'm not sure of her budget but was thinking also of the monorail resorts or even a DVC villa. Feel free to PM me if you need anything else as the time gets closer- I live very close to WDW too. ---Kathy

 

[Cheshire Figment]

The GAC is designed for people with "invisible" disabilities. If a person is in an ECV or wc they generally do not need a GAC. If there was a need for something like sign language interpretation seating at a show or a similar need then there would be a need for a GAC.

As far as the difference between renting and bringing a stroller, this would depend a lot on DD6's ability to stay up and keep up with everyone. If you brought a single and found you needed a double you would have to rent anyway; if you brought a double and DD6 did not need it your husband would have to worry more about maneuvering an unneeded double.

 

[Mr._The_King]

I have ALS also which is much further along in terms of progression. I travel now in a power chair on a ventilator 24/7, with a feeding pump and service dog. WDW is one place I know I can go where my needs will be met, both at the parks and the resorts. I have a dear friend who also had ALS who has passed away, but he was the father of 6 children and took them to WDW almost immediately after he got his diagnosis to make a memory with them. ( this is the reason why I wish there were wishes for adults- he fortunately could afford such a trip but most adults who are losing their independence and income cannot..but I digress). Ernie rented an ECV but found it difficult to use due to having to lean forward and also due to some issues with hand function. I know it's hard to predict your friends' function in November but definitely plan on at least an ECV. If she has one, she won't need a GAC as she'll be directed to the entrances where she can wait in the ECV until boarding. The other issue is that someone with ALS will tire quite easily so planning lots of breaks, relaxing in a pool or resting back at the resort is a good idea. I used to go to First Aid to take short naps and the folks there are very nice. For a resort, having alot of space would be nice. I'm not sure of her budget but was thinking also of the monorail resorts or even a DVC villa. Feel free to PM me if you need anything else as the time gets closer- I live very close to WDW too. ---Kathy

We are planning her for a seven day trip. I was wondering if maybe she should only get five day park hoppers. She has good days and bad days, so I would love for her to have the option of going as many or as few times as she felt necessary. After doing the work up with my mom that works for Disney part time, we were able to get $400 pop century rooms for the week she is planning to travel. Her budget is about $2000. She has her in laws and her parents going as well, so know they will do a lot of "treating". I think the monorail resort is out of their price range as much as I would love that for them. The kids and the husband are very picky eaters, so I think the dinning plan is out. I am worried about the back support on the ECV. Just the other day she was having difficulty with back pain. Of course she was holding her 21 pound chunky monkey baby in her lap. I wonder if there is a modification that is available or that can be made. I am planning on making a notebook for her of the various things to know, like where all the first aid spots are. As we get closer to November, we can look to see what rides or shows are reasonable. Thank you so much Kathy for your insight, as well as the offer of pm's I will take you up on that offer.

 

[Mr._The_King]

The GAC is designed for people with "invisible" disabilities. If a person is in an ECV or wc they generally do not need a GAC. If there was a need for something like sign language interpretation seating at a show or a similar need then there would be a need for a GAC.

As far as the difference between renting and bringing a stroller, this would depend a lot on DD6's ability to stay up and keep up with everyone. If you brought a single and found you needed a double you would have to rent anyway; if you brought a double and DD6 did not need it your husband would have to worry more about maneuvering an unneeded double.

Very good point! DD6 would not keep up for the parks, but I would bet she could keep up for the walks to and from the car and transportation center. They might need to make sure one of the other adults are with them to push an extra stroller. Thanks for clearing up the GAC card for me.

 

[disneynewbeemom]

I would recommend having your friend rent a double stroller for the girls at the park. Our 7 and 5 year olds still use a stroller (only at WDW). It allows us to focus on traveling at a faster pace and keeps everyone happy. Our 5 year old would have many meltdowns without the stroller at Disney. The double stroller would probably ease the mind of your friend's husband. That would be two less people he will have to worry about! We just find it easier for all of us!

 

[Mr._The_King]

I would recommend having your friend rent a double stroller for the girls at the park. Our 7 and 5 year olds still use a stroller (only at WDW). It allows us to focus on traveling at a faster pace and keeps everyone happy. Our 5 year old would have many meltdowns without the stroller at Disney. The double stroller would probably ease the mind of your friend's husband. That would be two less people he will have to worry about! We just find it easier for all of us!

My only concern is the baby napping in the rental stroller and getting both girls to and from the transportation. Some of the Disney strollers are very hard.

 

[SueOKW]

I agree about wishes for adults - I wish there was such a thing.

I have a serious suggestion. Spend the extra money on the monorail resort - - or what about WL? Renting points from a DVC member for WLV? Ideas anyone?

My sister was diagnosed with breast cancer and at some point we realized that money wasn't going to be the reason we couldn't be together somewhere fun and she couldn't still be comfortable.

Just my sad experiences talking. The money has long since been paid back to the credit card people, she's gone, but the memories will be forever.

ETA: If by then she has her own power chair, that will make a difference as she will have much better support than an ECV.

 

[dclfun]

I would suggest talking to one of the patient services reps at her local MDA clinic which also should encompass the ALS clinic and of course her physician to see about ordering a power chair now. She will certainly need one in the future and while she may not need to use it fulltime, part of having ALS is anticipating the needs and ordering equipment in advance, otherwise if she waits, then she'll have the need which won't be met for ages as she waits for it. I agree with the poster who said "go for it" in terms of the budget. I don't mean to be blunt as I'm sure she's just getting used to her diagnosis and still in an emotional whirlwind, but unless she's like me and willing to go on a ventilator and be dependent on others, then this will likely be her only visit to WDW. My friend Ernie had that one trip and he was wise to go when he did, while he was still in an ECV. They were from California and were DVC members so the accomodations weren't an issue but the airfare and meals, etc. for 8 people were quite the strain. I'm so glad he did it and spent the money which was eventually recouped by his life insurance policy. Your friend might want to check for any local businesses, their church, etc. that might donate funds for a compassion trip. Another poster who is terminally ill mentioned in his post recently that the "compassion partners program" at WDW gave his family the tickets. I'm not aware of that program but a few calls should help there. A few years back another family with the wife having ALS was treated to a stay at SSR by some friends and was also given donated tickets by this program for which she was told they help adults only who are terminally ill and of course not eligible to be treated by a wish program. My last suggestion would be to consider the timing of the trip- sooner is better in terms of her function. Perhaps she will have a slower progression and be pretty stable in November, but then again she might not. I wouldn't want her to miss the trip after all the anticipation or not be able to fully enjoy herself.---Kathy

 

[hematite153]

...I wish there were wishes for adults...

I don't really have any planning advice to add--you're already getting good advice.

However, there are wishes programs for adults. I discovered them too late to be useful for my DW's cousin-in-law who died last year leaving his 4 year old crying and his 7 year old refusing to talk about him. But, maybe the information will be helpful for some of the people on this thread.

Check out the Fairy Godmother Foundation and the Dream Foundation.

 

[SueOKW]

Thanks for that info - nice to know.

I also so very much agree about getting power chair ordered now.

Sue

 

[Mr._The_King]

Ok, We made the ressies for a five night trip. They will be staying in All Star Music. Because we booked it through my mom's, the cast member, friends and family discount, we were unable to make any special requests. I am going to call the hotel itself to make requests for her. What would you guys suggest? I will be setting up an EVC rental from Randy's Mobitiy. That call is tommorow as well. How will the evc be delivered? We don't have their room assignments yet. Another hurdle is renting a van. They will be traveling in an RV and want to rent a van that will fit 5 adults 3 kids and the evc and stroller. I have been doing some reading and wondering if there are handicapped accessible rooms with double beds? They will also need to keep a crib too. The evc could get stored and charged in one of the other rooms her family is renting. Thank you all for your help.

 

[Mr._The_King]

Another question, what advice should I give her about boarding rides? She will be in the evc. Does she try and find a cast member at each ride? What can she expect to happen? Will she and her party be escorted to the front of the line? She will need a little extra time to board.

 

[SueM in MN]

Most of the lines are actually wheelchair and ECV accessible, so in many cases, she will be waiting in the regular lines. Except for the time around Thanksgiving, WDW is typically not that busy in November, so the lines should actually be short.
I know you've read the FAQs, so I'll direct you to some parts of it that might be particularly helpful. In post 3 of that thread, there are some links to the official WDW website information about guests with disabilities. The one labeled "Mobility Page" includes a list of the attractions where the entire attraction is wheelchair and ECV accessible (so she could ride the ECV in line and stay in it for the whole attraction). There is also a list there of the attractions where the line is accessible, but she will need to transfer. You can get a copy of the Guidebooks for Guests with Disabilities at each park, but the stuff on the Mobility Page is more concise on the webpage, so I'd suggest copying that and printing it.

Also on post 3 of the disABILITIES FAQs thread, the first link in the "Un-official Links" is about boarding rides for someone who needs more time. The person who asked the question originally was not using an ECV or wheelchair, so there was some advice for her to request a GAC. Your friend won't need a GAC, but some of the other information on that thread - like which rides have moving walkways - would be helpful. If you can't pick out the pertinent parts, PM me and I'll cut and paste and send it to you as a doc file or a pdf file so she can have just the parts she needs.

Deb Wills' site has an attraction ride car section that shows what the ride cars look like. Her pictures were mostly for Pooh size people to judge how comfortable the seats are, but may be helpful for your friend to decide whether or not she can board them and/or how she could. There is also a new website with information for people traveling with wheelchairs that has some good descriptions.

For the stoller, I agree that the 6 year old may do very well with walking and they could easily rent a stroller at the park for her if she turns out to need one. My older DD had to walk when we went to WDW when she was 6 because the strollers then were more for 2-4 yr olds. She complained some, but really kept up quite well.
As for the one year old, they should bring a stroller for her. The WDW strollers are good for older toddlers, but not really for a baby. Here's a link to Deb Wills' site with pictures of the WDW strollers.

We rented an ECV a little over a year ago from Randy's. They were excellent and delivered it right to the room rather than to Bell Services. We had a phone number to call once we had our room so that we could arrange for the delivery. The guy who delivered it demonstrated it and would have shown us how to take it apart and put it together if we had planned to transport it by car or van.

For the van, most of the ones we have rented only had 7 seats; I think there may be vans and some ECVs that seat 8. You might have to look a little for that though.

I third the suggestion to look into a power wheelchair now. My DD just got a new power wheelchair in March. We had actually started the process last July. And, it was not her first power wheelchair. So, it's better to get the process started and get it faster than expected than to be waiting for it when she really needs it. For her back, the ECVs have a seat similar to an office chair and some don't have very good back support. I know some people have gotten a back support similar to this one from Office Max. Several people I know who have back problems carry one like that around and put it on any chair they sit on. It doesn't necessarily need to be strapped in like on the picture.

Good luck and sending lots of pixie dust for their trip

 

[Mr._The_King]

Thank you so much for your detailed response. I just poured over your post. So much great information. I am noticing she gets tired quickly. I am concered with her waiting in line. They will be there the week of Thanksgiving, so I am trying to prepare her for a crowd. Is there a way to get her to the ride quicker?

My mother is a cast member, so I will ask her in the morning. I know that she always goes out of her way to make magic happen. One time, when she was character greeting, a child about 8 years old, approached Mickey and he was blind. She let the boy feel Mickey's face ears, etc. She noticed the Father had mobility issues due to a full leg cast and they were all by themselves. She got them aside and asked what they had experienced so far. They were unable to do anything, because Dad couldn't ride with the son and the son could not get on alone. She got a manager to get a replacement greeter, had and evc delivered and took them on a whirlwind tour of the Magic Kingdom. She wisked them to the front of lines and had the ride stop so the son could feel things (like Dumbo's ears) Then she rode with him and described everything she was seeing. She spent the day with them. I cried when she told me that story and she said she was so lucky to meet this family.

Gosh, I am so proud to be her daughter.

 

[dclfun]

There are no front-of-line passes or a GAC that allows anyone to bypass the lines. If she's using an ECV or w/c for most attractions she will enter the regular line, for some she will be pulled out at a certain point to wait in a different line ( for instance if there are stairs ), and for very few there are alternate entrances. Her family can use FP's though and one member of the party can get FP's for everyone to save some time and also they can take advantage of the EMH's. She can use the time waiting though to savor the moment, enjoy conversation and playing with her children, etc. The time passes more quickly when you're interacting with someone. Hopefully her family will respect her need to rest. She can go to First Aid and use their cots if she likes vs. taking the bus back to AS Music. For the resort there's no reason why your Mom can't call DRC and ask to have any special requests noted on their ressie. If she's using an ECV she won't need a h/a room necessarily unless she needs a roll in shower. If she can take some steps they can still provide a tub with rails and a rail by the toilet. They can also place a transfer bench in the tub if she needs that. The week of Thanksgiving WILL be very, very crowded if it's all like in year's past. They can look forward to the holiday decorations to make up for that, extended park hours, plus the holiday music and special holiday events like the Candlelight processional that begins on T-day. I wouldn't focus so much on getting through the lines quickly but on choosing carefully which attractions are important and special to everyone in the party and just on being together. That's the magic of Disney and what she would benefit most from- a relaxing family trip without stress and worry of trying to do too much.---Kathy

 

[SueM in MN]

Cool story.

I wouldn't focus so much on getting through the lines quickly but on choosing carefully which attractions are important and special to everyone in the party and just on being together. That's the magic of Disney and what she would benefit most from- a relaxing family trip without stress and worry of trying to do too much.---Kathy

I suggest you look thru the GAC information on the FAQs thread again, but keeping in mind that it is not meant to bypass lines and if they are going during Thanksgiving, it will be busy and take more time to just get around - which a GAC won't help with. The ECV and having other members of the party get Fastpasses for them will help with lines, but I agree with Kathy that the choosing of attractions is going to be important. They will want to figure out which ones will be meaningful for them rather than just trying to hit everything. Even when it's not busy, it's not possible to hit everything in one trip and (at least I) would rather have wonderful memories of fewer things than try to do too much. The 2 older kids could help with planning - there is a book for kids called "WDW for Kids, by Kids" that has kid friendly descriptions of attractions.
Some of the non-traditional things that they can do that don't involve a wait would be things like the Kidcot stations at Epcot. Those are child size tables and chairs in each country of Epcot where a CM from that country leads some kind of activity. The last time I looked, they were making masks. Maybe not something the baby would like, but probably the older kids would.

Another thing to think about is how many transfers she will need to make. MK is the oldest park and has the most attractions that require a transfer. Think of each transfer like taking energy out of an 'energy bank account'. Once she uses all the energy in the account for the day, she will be out. And if she uses too much one day, she will have used more than she can save up during the night and be 'overdrawn' already to start the next day.
AK and the Studio have more things like shows that she can stay on the ECV for, so those parks may be less energy intensive.

As Kathy mentioned, there is a lot of extra stuff that will be going on and that they will see because of going over Thanksgiving, so even if they don't go on many attractions, there will be lots to see and remember. Also, besides First Aid, if they want/need to get away from the parks for a while, the resorts will be all decorated for Christmas, Grand Floridian usually has a HUGE gingerbread house in the lobby. The lobbies of all the hotels have nice comfy couches and usually have a TV playing Disney movies somewhere.

Another thing that is fun (and gets you out of the crowds) is to rent a boat at one of the resorts with a marina. We have rented a pontoon boat; easy to get on and off and pretty easy to drive. If you rent one at Grand Floridian, you can take it toward Wilderness Lodge and the other MK resorts and get a view of MK that can only be seen by a boat.

You are a good friend for helping with all the planning. Hope things go well for them.

 

[Mr._The_King]

dclfun and Sue you guys are so fantastic! You are really helping me so much. I want to make this vacation all about memories for her, and I want her to be as refreshed and relaxed as possible. I think it is more about seeing her kids faces in Disney, a dream she has had for years. She really has a wonderful family around her to help with the kids and she will be everyone's first concern at all times. I totally forgot how special the decorations will be at that time of year. It will be so exciting. The perspective you are giving me is priceless. I am going to set up the ride down for her (make hand painted outfits for the kids, make a countdown chain for the kids to watch the days slide by, and of course, Tinkerbell gifts to be given out when the kids need a little something extra)

Thank you all!!!