Help! Conflicted about going/questions & concerns

[eternaldisneyfan]

Okay. A little background information is needed for you to fully understand so please bear with me. I absolutely love Disney World. I love the magic and the accessibility. I haven't been in four years (since our family moved from Oklahoma to California), inside I am dying to go back...

Since our last trip I have acquired 24 hour J-tube feeds with G drain, a trach, ventilator use 14-20 hours a day, nerve damage/pain problems, extreme sensitivity to heat that causes retching/vomiting, high heart rate, and dizziness, breathing treatments every 2-3 hours, stamina issues/difficulty driving my wheelchair long distances due to arm weakness, and Spinal seizures (caused by spinal myoclonus from a nicked membrane and stretching during scoliosis surgery).

We used to be a commando type get-to-park-at-opening-and-leave-at-closing family. Now we're lucky to get to a park by one (judging from our San Diego Seaworld trip). And it took us 3 days to see Sea World (cool weather). Between the driving, a brief stop in Oklahoma, and 7-10 days at WDW, we'll be gone about a month.

Here's the rest of our crews medical issues:

Mom- milder form of Muscular Dystrophy, uses electric wheelchair anytime she leaves the house, sleep apnea, stamina issues

DSis-ellindea here-uses an electric wheelchair full-time, sleep apnea, some pain issues, kidney reflux/bladder problems that can result in lots of bathroom breaks

Grandma- bad arthritis, enlarged heart, diabetes, and wet macular degeneration. Dad pushes her in a rented off-site wheelchair when we go on vacation.

Dad- bad sleep apnea, bi-polar (controlled pretty well with meds but really stresses about time---he doesn't need/would NOT get a GAC). Caregiver for me, DSis, and Mom

Things I am stressing about:
1. We cannot fly and it is a very long drive from California to Oklahoma including mountains and my body does not like elevations. Tolerable with vent and oxygen.
2. All the hotel beds will be excruciating because of my orthopedic problems and contractures.
3. Dad getting too stressed which = stress for everyone else
4. Getting pneumonia (happens quiet frequently - 6 times in the past year)
5. Getting a port infection (I've had 3 infections in this port)
6. My GJ tube popping and needing to be replaced which can only be done in Interventional Radiology. I have a unique set-up at UCSF involving me on my side, my home vent, propping, Dad there, and no anesthesia
7. Needing medical care/the hospital.
8. Going all the way to Disney World only to do nothing/be miserable because of all my medical issues.
9. I often have to stop and rest while driving, I can't talk on my vent, I have a soft voice off my vent, and I am afraid of being seperated from Dad.
10. I am worried that we will be in line and I will urgently need the vent, need suctioned (happens frequently and sometimes without warning), someone will pull/knock loose a tube, and Dad will not be able to get to my equipment
11. Being really bored while everyone else eats (we do counter service-budget meals)
12. Bathrooms. I have to have pretty big bathrooms. Mom needs a higher toilet. Dad has to cycle through me and Danielle. It can be quite difficult to 'hold' the handicapped stall long enough for all of us to get through...

This will likely be our only chance to go. We live on a fixed income. The only loan we can get is home equity and we have to refinance this year. It's now or at least 10 more years.

I am soooo conflicted. I know about GACs. I don't know if one could accomodate our family. Shade doesn't help too much and all of us need Dad so we can't seperate for long periods. Mom and DSis so want to go. The last thing I said was no...Dad doesn't--but if I was gung-ho about it, he would probably change his mind. Grandma is happy with whatever we decide...We went to DL but didn't enjoy it too much.

Some questions:

dclfun- I know you've gone to WDW with a vent and other issues like mine, what has Disney done to accomodate you?

What rides/shows are near the companion bathrooms? Are they all by the smoking sections?

Are there counter service restaurants with entertainment/interesting things around? **important that it has indoor, air conditioned seating

What if someone besides me, wants to go on a ride-would the GAC/accomodations count?

Will all the FP be gone by 2:00?

Are there any cool/shady spots with lots of room but no smoke for the fireworks?

How can I not get frustrated about how long things take/how little we're doing?

Any touring/time saving tips?

Any non-Disney hotels that are close, with big rooms, and soft beds?


Thanks for your help


Christamae

 

[SueOKW]

wow - that's a lot of challenges. If you do manage to pull this off, I would go at the least-crowded, coolest time possible. That may be 2 weeks after Thanksgiving, I'm not sure.

As far as many other things go - the first aid stations might be a good place for all of you to rest etc?

Soft beds? I only stay at OKW and those aren't soft enough. I hear they will bring egg crate type skooshy pads if you ask. Marriott's have nice beds. (Check to make sure if you do pick a Marriott that their beds have been upgraded.)

A GAC generally accomodates up to a party of 6. But I think you said it all when you said you were worried about going all the way to WDW only to do nothing. Have you considered Disneyland?

Good luck with your decision.
Sue

 

[minkydog]

I don't mean to rain on your parade but...are you sure you wanna do this It just sounds like there are so many reasons not to. No one in my family uses a vent, but my DH has severe heart/lung problems which necessitate frequent rest, special diet, lots of meds, and his health can turn on a dime. In fact, we cancelled a trip to Yellowstone this summer because he can't tolerate the elevation(and lack of access to great medical care.) We happen to live near the East Coast so driving to WDW isn't too difficult. Last year we even went with oxygen. However, we did spend more time in our room due to DH's limited energy and there were things he just couldn't do because he ran out of steam. It was a very different trip as compared to our previous ones.

I don't think anyone can tell you what to do here. The challenges are mighty.

 

[tw1nsmom]

What about going to Disneyland instead? It would obviously be closer, thus saving a ton of money in gas and travel expenses. With the money saved from a big long trip to Florida, you could afford to stay at one of the on-site hotels for three or four nights. That way if you aren't feeling well, and aren't able to accomplish much, you won't have invested that much time or money into it.

 

[SueM in MN]

NOTE: I started to write this a couple of hours ago, but got interupted by making supper. I didn't check back if anyone else had posted before I hit "submit reply" so I apologize if I'm repeating things.

Your group does have more challenges than the average group dealing with disabilities.
I think one thing to seriously do is discuss whether this is doable or not with your doctors. I'd try to get doctors and hospitals lined up along your whole route before you go.
I'd suggest joining AAA. They would help in an emergency and the AAA office can also help with trip planning. They have things called TripTics where they actually plan out your route, with suggestions for hotels, restaurants, etc. They could also probably help with hospitals/medical resources along the way.
Also, keep in mind that if all your dad was doing was the driving, that would be enough to tire him out. When you add that he needs to physically assist several people and that he may not be totally rested because of sleep apnea, that makes for a very tiring trip.

2. All the hotel beds will be excruciating because of my orthopedic problems and contractures.

Is there anything portable that you could bring along that might help - something like this overlay or this kind of memory foam overlay? It would be another thing to pack, but would help with pressure reduction.

10. I am worried that we will be in line and I will urgently need the vent, need suctioned (happens frequently and sometimes without warning), someone will pull/knock loose a tube, and Dad will not be able to get to my equipment

I'm assuming you would have portable, battery operated suction. You sould like you really would need to be waiting outside of the regular lines because of your needs and the needs of the other people in your party.

12. Bathrooms. I have to have pretty big bathrooms. Mom needs a higher toilet. Dad has to cycle through me and Danielle. It can be quite difficult to 'hold' the handicapped stall long enough for all of us to get through...

Here is a list of Companion Assisted Restrooms (not handicapped stalls, a one toilet restroom with door) from allearsnet. There is a link to a picture of a typical Companion Restroom on that site.
Some of them are bigger than others. I believe all have raised seat toilets (at least the ones we used felt like they were.) The ones is MK were almost always busy with people taking their children in. We had to wait outside the one at Cinderella's Royal Table in a long line for over 15 minutes. Once we got in, people kept knocking on the door to see how long we would be because they wanted to use the restroom for changing their children into princess costumes for their character meal.
We didn't have much wait at Epcot, AK or MGM.

I am soooo conflicted. I know about GACs. I don't know if one could accomodate our family. Shade doesn't help too much and all of us need Dad so we can't seperate for long periods.

You shouldn't have to separate. It appears (at least to me) that a number of people in your party have needs that would benefit from a GAC. At any rate, even if you are the only one with a GAC, they are usually issued for the person with a disability plus up to 5 members of their party. You would be a total of 5, so would all be able to stay together.

Are there counter service restaurants with entertainment/interesting things around? **important that it has indoor, air conditioned seating

At MK, Cosmic Roy's Starlight Cafe has an audioanimatronic performer who sings and plays a sort of space piano.
Also at MK, there are a few (very few) tables that overlook the boarding area for Small Worlde
At Epcot, the best would probably be the Sunshine Seasons in the Land. There isn't actually anything to do there, but it's a busy place with a lot to see. There is also a new Companion Restroom in The Land.
At MGM, the ABC Commissary has TVs that play promos for ABC TV shows. I haven't been in the Tune In Lounge , but it sounds fun with TVs playing old Mickey Mouse Club Shows.
At AK, there are not really any counter service places with entertainment that I can think of, but the Pizzafari has really interesting murals on the walls, ceilings and even painted scenes on the tables and chairs.

What if someone besides me, wants to go on a ride-would the GAC/accomodations count?

Will all the FP be gone by 2:00?

If you think there are a lot of rides that you won't go one that other people in your party will, one of the people who has the most needs and wants to ride the most things could request their own GAC. Another possibility is that because your party needs to stay together as much as possible, you may be able to explain that to Guest Services and get them to write something on your GAC that reflects that. Kathy may have some advice regarding this.

Many of the FastPass attractions are the ones I don't think anyone in your family will be riding (things like Test Track, Space Mountain, Splash Mountain). Even though some of the shows have FastPass, they also mostly have pretty large capacity and you would not usually need a GAC to get in - especially since you have several wheelchairs in your party.

Are there any cool/shady spots with lots of room but no smoke for the fireworks?

Shade won't be a problem for the fireworks, smoke might. The most important thing for Illuminations is to know which way the wind is blowing. If it is toward you, you will be pretty uncomfortable.
We watched the MK fireworks (Wishes) from Fantasyland - much less busy than the area in front of the castle. One place we have watched the parades from is an area near the bridge the is near Crystal Palace and goes in to Adventureland.

How can I not get frustrated about how long things take/how little we're doing?

I like to look at all the details and just think about how much planning was involved in everything. The details in everything are amazing. Even little things like the signs on the restroom doors are themed to where they are.

Any touring/time saving tips?

Any non-Disney hotels that are close, with big rooms, and soft beds?

If you let me know where to send it, I'll send you a copy of the new Passporter book. I still have a number of copies left and
I'm trying to send them to people who need a little pixie dust.

 

[dclfun]

Christamae- I am off to work today but will answer this when I have the time needed to answer properly but of course I feel your trip is doable with some considerations. I have many of the same concerns you do. BTW, when is your trip planned? What month?---Kathy

 

[nowellsl]

Medical problems aside and keep in mind that I usually frequent the budget board - I would never take out a home equity loan to finance a vacation! Especially if you are on a fixed income. You would be putting your house at risk. I think the Disneyland suggestion was a good one.

 

[Ali and boyz]

Hope I can help a little

my son is a C4 spinal injury and whilst he is no longer ventilated has some of your heath issues.

re the beds/mattress. he cannot relieve his own pressure areas so we take a REPOSE mattress. it comes in a tube and is not unlike a lilo, it fits into its own pump and takes up really no room at all. (we fly from the UK and it fits into a suitcase atbout 5" diamater and 24" long. we used it here on holiday and he slept on top of it last year , 14 days in Florida, you place it on top of the bed mattress. he has never had a pressure sore once since we used it and as I say he is high risk. It is made by Frontier Therapeutics and is classed for the treatment and prevention of presure sores.

We cannot do long distances too so I would think breaking the journey a couple of times with overnights would help the stress levels and also make sure your lines etc are all in place.

Our doctor give us an antibiotic to take that covers ALL medical things like UTI's, kidney infections, chest infections and as he has a suprapubic site it also covers that.

our son also cannot tolerate sun or cold for that matter as his body goes to the temperature of his surrounds and because of him not being able to feel if he got burnt or even got too cold he would take a dysreflexic attack which can be fatal. So we make sure his shorts cover his knees and he had factor 50 sunscreen on and a hat and don't leave him sitting in the sun. Our spinal unit also gave us a great tip NEVER EVER put ice in his drinks as it chills your insides so your outside body temperature would be hot and inside chilled and it knocks his system to pot and again brings on an attack. (noticed you also had problems re the sun)

sorry I can't be of more help . Can I also say that I feel being organised is the key to it all. If somebody had said to us 4 years ago after or son broke his neck you would be in Florida I would have laughed but we did it with months of planning.

would Disneyland C not be an easier task for you all this time round away

good luck

 

[ellindea]

Medical problems aside and keep in mind that I usually frequent the budget board - I would never take out a home equity loan to finance a vacation! Especially if you are on a fixed income. You would be putting your house at risk. I think the Disneyland suggestion was a good one.

My sister failed to mention that the whole reason we got the loan is b/c we are in desperate need of a new accessible van. The one we have now is 10 years old, it has broken twice just in the last month or so and the lift finally gave out this past month as well (had to replace the barrings). You guys all know how expensive it is to get a reliable accessible van; well, we have to have one that accommodates three wheelchairs. Hence the home equity loan.

We are considering Disneyland. However, the one time we did visit there was probably the worst vacation we've been on. A major factor was that it was really cold, 45-60 the whole time (it was actually kind of a freak thing, b/c it was in the 70-80s he weekend before that!). Another thing is, there really are much fewer things we can do there. In Disneyland, there is about 8 attractions we could all do (excluding nighttime shows). It's the same story for DCA. It also overall seemes a less friendly place, many of the CMs were cranky or cynical...half of DCA is Paradise Peir, which just feels like a giant carnival w/ a bunch of rides I wish I could go on but can't. I am willing to give it another go (when it's warmer!) but for us there wasn't that Disney magic goin' on.

WDW, on the other hand has always been like paradise for us. Sooo many things to do and see for everyone, and always happy faces and fun music. In addition, making the trip would mean getting to go back to Oklahoma, something I've been wanting to do since we moved. I left some of my best friends there and almost all of my dad's side of the family. The thing about our disease is that it's progressive. If we wait, we may be in too weak a condition to go. If we do get to go to WDW again, it would most likely be our last time. For the past couple of years, we've been talking about a trip to WDW only as a far-fetched dream. But now, having to get this loan, we may have enough left over to actually finance that dream.

Thank you, SueOKW for the comfy beds report and the first aide station suggestion. Christamae now has a secondary control that would allow Dad to walk behind her and drive for her when she gets tired, and I think that would help significantly (if he can get in enough driving practice )
Thank you, esp., SueM, for your wonderfully detailed response. That's a whole lot of good info! That air mattress looks like a comfy option. I also really enjoy just taking in all the details and realizing just how themed everything is. To clear some things up, Mom would be doing most if not all the driving. Rides: Grandma, despite her medical issues, is a hardy woman and really enjoys rollercoasters, so we usuallly try to make sure Dad and her, and sometimes Mom (if she can transfer ok), get to enjoy some of the fast-paced rides (i.e. Tower of Terror and Big Thunder Mtn. Railroad).
Kathy, I look forward to hearing your input.
Ali_and_boyz, thank you for your input as well. Getting a broad-spectrum antibiotic is a good idea. And yah, I think having, like, a break day is a good idea, but I think Christamae is worried it would be too boring . She is of the "go-go-go" spirit.

 

[dclfun]

I'm going to break up my reply into sections as I won't have time to type it all at once ( and one time I wrote a lengthy reply only to have it "time out"..don't want that to happen again!). First of all, I have similar issues and I do think your trip is a possibility. I'd start with a call to your physician to let him/her know of your plans and to be sure driving through the elevations are safe. Secondly, for Christamae, you really need a way to communicate when you're on the vent. If you don't have a ACD then perhaps the MDA loan closet could let you borrow a portable one for your trip, or at least put a switch you can operate somewhere on your chair that you can use to alert a caregiver in case you need to be suctioned or have another immediate concern. You might be in noisy areas where your low voice might not be heard and besides, there's no need to strain and struggle to communicate. It would be a safety issue in the parks plus something you will eventually need at home.

I know you mentioned before that you had a prior WISH trip to WDW. Is there any way to contact that WISH coordinator to see if they can help you set up medical accomodations while you're at WDW? I'd strongly consider hiring or seeing if there are volunteer caregiver/nurses who could assist your Dad while you're in Florida. His being responsible for the physical care of so many people to me, is not reasonable or feasable. GKTW or MAW might be able to get phone numbers for caregivers and/or see if a local nursing school might have someone who would really enjoy helping your family have some magic. Even though it wouldn't be "through" MAW, they still might be able to help with those resources. Having another set of skilled hands would be helpful even if it's your Dad doing most of the handling- that person would be there to help him and again to assure that you are safe and comfortable.

I'd write to WDW Guest communications. Enclose a copy of what you wrote intially to explain why you are taking the trip, why it is so important, and what accomodations you would like to have. Your post was excellent. The GAC at WDW no longer allows anyone other than a WISH child to have front-of-line or priority access so you might need some help there to be able to wait outside the lines or to have an appropriate accomodation. I would NOT wait til you get here to request those accomodations. Even though a card might not be able to be issued until your party arrives, your family's medical needs are complex enough that it seems best to be assured that you will be safe in the queue lines.

More later.....---Kathy

 

[Daydreamer64]

I've not experienced the type of medical situations that you deal with on a daily basis but I want to say something that I'm sure that you have thought about but jumped right out at me when I read your post. Was that last sentance confussing enough for you?

Anyway, last summer, in early June, our family watched wishes from the bridge near TL- the one closest to the castle. We waited for quite some time for the crowds to clear out because we had our 2 boys with us and I was expecting our third child and didn't want to get bumped. While we thought the crowd looked quite a bit smaller we started out toward the exit.

I do not know what happened but for some reason very quickly the crowd stopped moving and all of us were just stuck together in mainstreet- at first we felt safe enough- we made sure that we had the boys hands, DH walked/slowley shuffled in front of my belly to keep me from getting bumped and so on. It only took a few seconds and all heck broke out- for whatever reason that we stopped, the people way behind us started to push- we heard yelling and it sounded like someone panicked?? It didn't take long at all before I was frightened- one of the boys was knocked down- we had little room to help him up, and people just seemed to keep converging on us. I was squished and the boys started to cry- they were 11 and 9 years old so not little ones - we felt like we were not able to breath and felt like we were getting hurt. We couldn't see what was happening nor could we move one bit except to be pushed tighter as others around us began to get upset and shove even more.

We have been to WDW many times and have not experienced this situation on any other trips except this one.

I'm telling you this because, as I am sure you already do this, you must make sure that you leave lots of time for the crowds to clear out especially with your tubes and so on. I really hope that the trip will work out for you- we live in Atlanta, if I was local I would volunteer to escort your family and help out. Maybe some of the make-a-wish or GKTW groups can find people to help.I hope it all works out for you.

 

[eternaldisneyfan]

Thank you for all of the advice thusfar...

To answer a few questions and some clarifications:

My mom wants to go in July (next month). Dsis starts college August 28. Because we have to cross so many mountains, the only safe time to travel is the summer. I am kinda doubtful that we can throw a trip together that fast. But to my mom's credit, last year I got a port infection right before we were going to leave but a couple days after I finished my IV antibiotics we were off and had a great time. We went to San Diego. Then I was using my vent when I slept and 2-4 hours a day. So my vent time has dramatically increased 14-20 hours a day. We did end up leaving a park one day because of heat issues. If we can't pull things together I am hoping that we can go next summer.

Secondly, for Christamae, you really need a way to communicate when you're on the vent. If you don't have a ACD then perhaps the MDA loan closet could let you borrow a portable one for your trip, or at least put a switch you can operate somewhere on your chair that you can use to alert a caregiver in case you need to be suctioned or have another immediate concern.

I forgot to mention that I always wear a bell band around my foot. I can jingle pretty well . We call it my emergency broadcast system . I wear it on my hand at night to wake up my parents. I use a Chattervox mike/amplification when I am off the vent. I have looked at ACDs but most involve touching a screen which I cannot do. I use SofType 4.2 on-screen keyboard to type.

I know you mentioned before that you had a prior WISH trip to WDW. Is there any way to contact that WISH coordinator to see if they can help you set up medical accomodations while you're at WDW? I'd strongly consider hiring or seeing if there are volunteer caregiver/nurses who could assist your Dad while you're in Florida.

Another good idea--but a problem. I had my wish in Oklahoma and now I live in California. I really have no idea how to contact someone especially since I moved. Help for Dad: Well, currently Grandma does laundry, cooking, and sets up Danielle's medication. She can suction off the vent. Mom makes my food (tube feeds), does my nighttime medical care, gives breathing treatments, can take the vent on and off (can even do it in her wheelchair with enough room), suctions, and does hair and make up. Dad is in charge of all lifting, dressing, propping in bed, bathroom, bathing, transfer/packing of medical equipment for Dsis and I. He also helps mom in and out of bed/the shower and if she gets stuck. Mom is the big organizer with lists and bins for different medical supplies. I know that mom and dad would not want someone they didn't know helping. Not to mention that everything about me is so specialized (special additives to food, farrell bags, special med procedures, unique suctioning, lip reading) and lifting...Mom and Dad just got comfortable enough with a lady from church (after 5 months of training) to leave Dsis and I. And honestly I think if we factored in the cost, we wouldn't be able to go. I would love for the lady from church to come but she has 6 kids, including her own special needs son...I will throw the ideas at mom...My family is truly fantastic!

I'd write to WDW Guest communications. Enclose a copy of what you wrote intially to explain why you are taking the trip, why it is so important, and what accomodations you would like to have.

An excellent suggestion and one I hadn't thought of. How do I contact guest communications?

I have been thinking about bringing my hospital grade air matress. It has a motor and is currently on a hospital frame. Do you think I could put the matress on top of another bed? Would there be enough room/would they allow me to bring the bed frame in the hotel room?

I am hoping that if everything is organized, planned, and we have good accommodations that the trip will be enjoyable. Dad has to do so much already!

I'll definitely check with my specialists and mark hospitals on the travel route.

Thanks for all the suggestions and keep 'em coming!

Christamae

 

[SueM in MN]

I have looked at ACDs but most involve touching a screen which I cannot do. I use SofType 4.2 on-screen keyboard to type.

Most can also be activated with a switch and scanning and there is one that can have a built in headmouse. It's a camera built into the ACD that picks up what you are looking at by focusing on a small reflective dot on your forhead or glasses frame. one of my DD's friends has one of those and it works quite well.
Most of the ACD will work with scanning and a switch - here's a link to the Dynavox company. And there is a company that makes really wonderful software to make Mac computers accessible to people with very little movement. (You have to look at the videos on this site - the people using the computers can scan faster than I can follow with my eyes).
The MDA lending closet might have one of those devices available.

Another good idea--but a problem. I had my wish in Oklahoma and now I live in California. I really have no idea how to contact someone especially since I moved.

If you stayed at Give Kids the World Village, you could try contacting their website: www.gktw.org
Or try contacting the national Make a Wish organization website at http://www.wish.org/

I know that mom and dad would not want someone they didn't know helping.

I wonder if there is anyone from your church besides that lady who could help? Maybe someone from the church has a college student in a health related field who is off for the summer. Keep in mind that your whole family would be there - this person would be an extra pair of hands for your family. You wouldn't necessarily be alone with them, so that might make your parents feel more comfortable. One other thing to think about is that your mom may not have room to assist you easily in a hotel room, so you may need some extra help.
Or, maybe a relative or friend who would not necessarily help with care, but with other things - like the driving or getting things - to free up your family to do the care.

An excellent suggestion and one I hadn't thought of. How do I contact guest communications?
I have been thinking about bringing my hospital grade air matress. It has a motor and is currently on a hospital frame. Do you think I could put the matress on top of another bed? Would there be enough room/would they allow me to bring the bed frame in the hotel room?

I don't have an address handy for Guest Communications - and I'm trying to type fast because we have a thunderstorm here right now, but you could try
Special Reservations Line: (407) 939-7807† - option 1
they should be able to give you an address and also answer the question about room size and mattresses if you might stay on site. The mattress might make the bed too high - especially if your mom is assisting you from a wheelchair.

On thing to think about for cost is that right now the WDW resorts have free dining. I know that doesn't really matter to you since you are tube fed, but not having to pay for meals for the rest of your family might mean you can stay at one of the WDW resorts instead of off-site. Also, if you are onsite, you don't have to pay for parking (I think it is $9 a day). And you would have the option of using WDW resort transporation - with 3 or more wheelchairs to move around, you can call transportation for a wheelchair shuttle bus to transport you around.

 

[dclfun]

Christamae- I will echo what Sue said about using an ACD...they have different switches ( you could even have it mounted by your foot) or eyescanning methods to use an ACD. Even if you don't absolutely need one now I'd be looking into it and having an eval. by a speech therapist who will prescribe it. I only say this as I don't need one yet but I have one...a Words + system which was paid for with a combination of Medicare and MDA assistance. They wanted me to train on it and get comfortable with it so when it's absolutely necessary for me to use it I won't then have the stress of learning. I was also told that they can continue to adapt the way it's accessed...and currently I don't use the keyboard either. I have ICU nurses that volunteer to help me- this is what I was thinking of for your assistance. More like a local nursing school with someone who is trained, not just a "volunteer" without a medical background. I know what you mean about everything being specialized but your Mom or Dad could possibly direct that person, or just have that person with you in case of emergency. In crowds I have someone stand behind me and now my service dog will alert to my vent hoses if one even becomes slightly dislodged. ( another subject for you....getting a service dog which has changed my life greatly!). As for the bed, I also bring my air pump mattress overlay and it fits on the resort beds fine. You might want to rent a hospital bed or bring wedges or request extra pillows. It's hard to get comfortable otherwise in the resort beds. So far I've found the beds at AK Lodge to be the best, btw. I am often there for short stays but for a longer visit I know I'd consider renting a hospital bed. I've seen companies deliver hoyer lifts and beds to the resorts so I'm assuming they'll remove a regular bed to accomodate one if necessary.

I would think with a bit more time and planning you can find resources that will make your stay safe and comfortable. Coming this July though would be tough...and remember that it's HOT and rains every day. I retreat in the rain....too much risk of equipment damage. I really don't know if you'd tolerate the intensity of heat in July. It's tough for people without disabilities.

Kathy

 

[eternaldisneyfan]

Thank you, thank you for all your suggestions! (especially Kathy and Sue)

I've been discussing things with mom...She is probably going to get a AAA membership. She also reminded me that because of the lovely government rules-we cannot save the money and would have to go this summer.

Coming this July though would be tough...and remember that it's HOT and rains every day. I retreat in the rain....too much risk of equipment damage. I really don't know if you'd tolerate the intensity of heat in July. It's tough for people without disabilities.

This is one of my main worries. Unfortunately, DSis is starting college August 28, we have tickets to Champions on Ice for August 7th, and round trip with a stay takes about a month. Mom will not travel outside of summer because of the mountain passes. Also I am sensitive to cold I am hoping to get this sun/rain cover http://www.diestco.com/canopies.shtml

Kathy, has your hospital air mattress ever been damaged? How do you secure it?

I have ICU nurses that volunteer to help me- this is what I was thinking of for your assistance.

Do you pay them for their service? What about tickets/hotel/food? Mom said that we couldn't really afford to hire and pay for someone ...

Even if you don't absolutely need one now I'd be looking into it and having an eval. by a speech therapist who will prescribe it. I only say this as I don't need one yet but I have one...a Words + system

Are there ACDs that let you type and say anything? I do not want to be confined to set phrases...One more question for you- do you have a 2nd vent? If so, how did you get it? My 2nd vent got taken away about 6 months ago and I am trying to get it back...

So, basically our plan is plan like crazy for a possible trip. That way if everything falls into place, we will be prepared. If not, well, I can keep dreaming. I have been fantasy planning for a while and checking out tips on the dis.

Oh, Dad's opinion seems to be turning

Christamae

P.S. SueMN, I hope you made it through the thunderstorm...I hate storms

 

[dclfun]

Christamae- if you come this summer I hope to meet you! Now to answer....the ICU nurses that I have volunteer for me. We met during hospital stays and the list of those who are willing to help grows. I also received some volunteer assistance from the local nursing school. This is where I would start...by having either MDA give you some resources in Florida ( such as a contact here at the Central Fla MDA) or through a local MAW chapter, explaining that you were a wish child and now wish to return to WDW but have complex medical needs, and that you are looking for resources. If you stayed at GKTW they have an open door policy to welcome any former child and family back for a visit. I'm sure they have staff that deals with medical issues every day and may have contacts for your family. I have known WDW to give comp tickets for adult compassion issues but I have no idea who to go through for that.
As for the ACD, yes..you can type whatever you want. Mine has a scan program that scans each line then you click on the letter you want. It starts to predict things and will then pop up a word that starts with the letter(s) and you can then choose the word. If you can do onscreen typing, then that's even easier. It allows you to type things in advance if you have a long message to deliver to someone. I'd never settle for preset phrases either although they can come in handy ( I'd preset them myself to say what I want...such as in case of emergencies or a simple phrase or paragraph to explain something, such as how I need to access the bus in my chair or where the tie downs are located or to tell people not to pet my service dog). Again, right now I don't use it but am getting ready for when I need it. You can also get a voice program that either records your own voice or the ATT natural talk where you won't "sound" like a robot. If you use a preset voice you can choose the voice you want from a menu of choices. I went to a speech therapist and was evaluated on several different devices, choosing the one I thought had the options I would want the most. There are simple speech only devices then the laptop device I got which also operates as a laptop and has computer access. I had to pay separately to get a chip installed since Medicare will not pay for a computer, only the speech generating device.
My air mattress hasn't been damaged and it's mostly secured just be being under the sheet. I always bring a power strip with me to plug in everything that needs charging at night- the air mattress stays plugged in with a note to housekeeping not to touch it.
Are you planning to stay on property? To me, this would be the best for being able to get back to your resort quickly and with Disney transportation. In case of any emergency they will send a special van and in fact due to your issues with the heat you might be able to get special accomodations to be transported this way...this would be one of the things to address in your letter to guest communications. You might consider renting DVC points from someone and if so you'd have a large spacious place to stay such as at Old Key West with a full size washer/dryer, full size kitchen and separate bedroom/living room. If your budget doesn't allow you to stay on property then I'd suggest looking at one of the sites that rents out unused timeshare properties, such as Skyauction. I've rented from them before and gotten a two bedroom unit for $200 a week. You bid on their website for what you want. They have accessible units and must, by law, provide accessible transportation to the theme parks, etc. They also don't require you to attend a timeshare presentation.
One thing I forgot to mention is your being bored while everyone dines. This can be avoided by strategic choices. Esp. at Epcot there are quick service locations close to where one of the bands is playing in the countries. Other than that you might want to bring a hand held game if it's not too physically tiring or just perfect the art of people-watching. You can also use this time to tilt your chair back and get some relaxation.
Good luck with your planning and I hope to meet your family this summer! ---Kathy

 

[SueM in MN]

Are there ACDs that let you type and say anything? I do not want to be confined to set phrases...

P.S. SueMN, I hope you made it through the thunderstorm...I hate storms

I did make it thru the thunderstorm and today is a beautiful day.

Most ACDs have different capabilities that can be accessed. Often they are set up to start with a picture/icon system.
Most people have at least some buttons with set phrases - because, why use the energy to retype things all the time when you will be saying the same things over and over. A lot of times, the phrases are things like "Hi, How are you." "I need some help with __" - if you need help, it's much faster to access one button with a phrase than to type it all out.
This video shows a woman with ALS who has set up a very sophisticated system that includes complete control of her computer and a program for speech, using an onscreen keyboard - with word prediction so she can type just the first few letters of a word and it "guesses" what she wants to type. She also has pages of frequently used phrases that she can activate with just one stroke.

My DD is going to be trialing a device called Vantage. It comes set up with picture icons (some people use those even though they can read and write because it's faster to look at a page of icons and pick out what you want than it is to look at a page of words).
Here's a link to one type of word based program. This one is called Word Core. There is another popular program for available for many different ACDs called Word Power. This pictures of it on this page are not too good, but it does give you an idea of how it works. These programs are set up around a core of 100 or so words. They have done a lot of research on how people communicate and found that these 100 words make up about 50% of what people say. With easy access to just these 100 words, and the ability to type in other words, you can say pretty mcuh whatever you want without having to type in each word (which can be very time consuming).

 

[michelle9343]

Christamea
I just wanted to say that I am keeping you family in my prayers that this will all fall into place. WDW is a magical place and I totally get why you would want to get back.
Sue and Kathy
You guys are amazing!!!!

 

[SueM in MN]

Sue and Kathy
You guys are amazing!!!!

We just have lots of life experiences and are willing to share.

 

[dclfun]

Just thought of something else to add. When I went on a cruise that went from coast to coast my vent and w/c company had called ahead at each port to arrange a vendor there in case of emergency. I brought extra supplies of course but "you never know". Fortunately I didn't need to use any of them. I also had cases of tube feeding sent ahead- you might see if your local vendor has a branch in Florida that could deliver to your resort since I know you'll already have three chairs and alot of medical equipment in your van.---Kathy