Hoping 3rd time is a charm and what is a GAC?

[lippylulu]

Once again we are trying to make our first trip to Disney ever. We were supposed to go Oct. 2007 but had to cancel when I had cervical spine surgery. Then we were suposed to go in May when my husband was diagnosed with brain cancer from metastatic melanoma (wear sunscreen people!). His decision to pursue treatment and not give up and die came when the doctor asked him what he wanted to do and he answered "I'd like to take my daughter to Disney World." Flash forward 6 months and we now appear in a termporary stable zone with a window of opportunity to take our 11 year old daughter (adopted from Russia just 3 years ago) to Disney World. He has clearance to travel, but he tires VERY easily (sleeps 2-4 hours a day and 12 hours a night). He is currently fighting the idea of a scooter (too embarrassed---what is wrong with this man) but his stamina is poor and if we want to make the most of this wonderful opportunity and avoid needing to sleep for 2 days after every one park day he will need it. I have convinced him we will rent a scooter in case I need it, which is possible due to my neck and back problems anyway.

We are staying at the Sheraton Vistana Resort through RCI and I have heard we rent a scooter for a week from a local company delivered to us and it will save money over renting at the parks where there may be limited availability. Can anyone provide a recommendation on this? Also, what is a GAC? My husband is brain injured (had a double craniotomy for 2 brain tumors and radiation brain surgery twice). Aside from fatigue, he gets easily overwhelmed from lots of sensory stimulation. Can a GAC help us and how do we get it?

Thank you.

 

[SueM in MN]

Sorry to hear about your situation, but glad to hear that you are going to be working out his dream.

He has clearance to travel, but he tires VERY easily (sleeps 2-4 hours a day and 12 hours a night).

He may find that he actually needs to lie down at WDW in the parks in order to conserve his energy. The 'conventional wisdom' is to go back to your resort mid-day, but since you are staying off-site, you may find that going back is more tiring than staying in the park.
If he wants to rest (even sleep), he can do that at First Aid in any of the parks. They have rooms with cots where you can lie down and rest. If he has a cell phone and can cell you, he may feel comfortable enough to actually get some rest.

He is currently fighting the idea of a scooter (too embarrassed---what is wrong with this man) but his stamina is poor and if we want to make the most of this wonderful opportunity and avoid needing to sleep for 2 days after every one park day he will need it. I have convinced him we will rent a scooter in case I need it, which is possible due to my neck and back problems anyway.

One of the things that has worked well in convincing other people of their need of an ECV (another name for mobility scooter) is to find a familiar place that is about 3 miles away.
Ask if he could walk there. He will probably admit he could not.
If he says he could, ask if he could walk there and back. If he says he thinks he could, ask about doing it every day for as many days as you plan to go to the parks. At that point, most people will give in and realize they need a scooter. IF he doesn't, you can point out that the average guest to WDW walks 3-9 miles per day in the parks (not counting how many they walk getting from their room to the bus stop, back to their room, etc.)
Just walking around the water at World Showcase in Epcot is 1.3 miles!!!

Another suggestion is to look at energy needed to be in the park for a day like an energy 'checking account.' During the day, energy is 'withdrawn' from the account to 'pay' for things you do. If all the energy in the account is spent just getting from place to place, there won't be anything left for what you are actually there for - having fun and making memories. Just like a real checking account, if energy keeps being withdrawn without making 'deposits', the account will become overdrawn. Rest and a good night's sleep add energy back into the account, but if it's too 'overdrawn', that won't make up for the deficit. And, just like a checking account, there are penalities to being overdrawn - the penalties in this case vary depending on the person; for one person, it could be increased pain. For someone else, it may mean not being able to get out of bed the next day.

We are staying at the Sheraton Vistana Resort through RCI and I have heard we rent a scooter for a week from a local company delivered to us and it will save money over renting at the parks where there may be limited availability. Can anyone provide a recommendation on this?

If you look in post #2 of the disABILITIES FAQs thread, you will find information/phone nunbers/web sites for places DIS posters recommend.

One question to ask yourself since you are staying off-site is how you will get the scooter back and forth from your resort to the parks?
Do they provide a shuttle bus? If so, are all the shuttles wheelchair accessible or only a few? How often does the shuttle run? What time is the last shuttle?
If you are renting a car or van, you need to make sure you will be able to lift the scooter into the vehicle. When you arrange for a rental, make sure to ask for ine that can be broken down into smaller pieces for transport. Ask how heavy the biggest piece is and make sure that is a weight you can handle.

Also, what is a GAC? My husband is brain injured (had a double craniotomy for 2 brain tumors and radiation brain surgery twice). Aside from fatigue, he gets easily overwhelmed from lots of sensory stimulation. Can a GAC help us and how do we get it?

Thank you.

GAC stands for Guest Assistance Card and is a tool to help the CMs know what types of assistance people with disabilities need. Since not everyone has the same needs, the GACs have differebt information based on the needs of the person it was issued to.
If you go again to the disABILITIES FAQs thread, post #6 is all about GACs and should be able to answer your questions.

You will find that thread near the top of this board or you can follow the link in my signature.

 

[lippylulu]

You really offered some excellent information. Truth is, my husband and I are both a bit disabled..,he is ill with cancer and has some TBI (traumatic brain injury) as a result and I still have cervical spine problems though am MUCH improved from surgery. The idea of a lie down in a frist aid station is excellent! If my neck acts up, a little medication and 15 minutes of rest can do wonders for me but I think we would have to send hubby back to the resort if he fades for the 3-4 hour daily nap he needs most days. My daughter and I could then keep going, or just return and hang by the pool because I guess I need to take it a bit easy myself as well.

We plan on renting a car but I am concerned about the ease of taking a scooter apart and putting it back together every day. I can't lift heavy parts. My husband may be able to but it could take a lot out of him. Sad (or perhaps a blessing) to say, but our 11 year old daughter is probably stronger than both of us right now and can be depended upon to be a great help.

Thanks again for the excellent advice. Anyone have an opinion on whether we should rent for the week or just hope to rent a scooter at the park with a GAC? We are going Dec. 12-20th and I don't want to run the risk of them being out of ECV's, but really we probably only need them at the parks.

One last question I forgot to ask...will our NY handicapped parking tag that hangs on the rearview mirror work in any state?

 

[SueM in MN]

Thanks again for the excellent advice. Anyone have an opinion on whether we should rent for the week or just hope to rent a scooter at the park with a GAC? We are going Dec. 12-20th and I don't want to run the risk of them being out of ECV's, but really we probably only need them at the parks.

The first part of your trip might be OK for crowds, but the last part is much closer to Christmas and might be pretty busy. So you would be taking a chance about getting an ECV.
Another thing that might help for getting an ECV into a van would be to rent a ramp (there is information in the disABILITIES FAQs thread in post #2). A ramp would allow you to roll the ECV into a van with minimal need to take it apart.
I'd also suggest calling some of the ECV rental places and asking for suggestiions for transport.

Also, if your husband goes back to the resort, have you thought about how you and your daughter will get back?

One last question I forgot to ask...will our NY handicapped parking tag that hangs on the rearview mirror work in any state?

Yes.
The handicapped parking permit in every state is recognized as valid in every other state. Some states have some different rules (like some states exempt handicapped parking permit holders from putting money in meters or from time limits on using parking spots and other states don't), but you will be able to use the handicapped parking permit from NY to park in the WDW handicapped parking spots with no problem.

 

[zumbergc]

Definitely take this time and go, make the most of the time you have.

There is a good chance your husband may only have enough energy for 3-4 hours out in the park every day. After that energy is spent it may be time to go back nap, take it easy at your resort.

How is he the next day after he goes out shopping or the grocery store, or some other short trip, a family gathering thats a few hours long etc.

Reason I ask is because depending on how wore out he is from the chemo going on, or recovering from and on a break, or how long he has been on chemo. 3-4 hours of action, no matter if your in a scooter or not, can ware some cancer patients out the whole next day. Just depends on where they are in their journey. So, keep that in mind.

Also keep in mind the of traveling to and from home, will probably be just that a travel day, and he may extremely exhausted from that. If you have an extremely long travel days. It may be necessary to rest the entire day before.

You may want to find some ear plugs before your trip, that you know will fit properly, in the event you end up in a section, that he can't take the noise.

Also, this was something we found out with my mom. If his butt is completely gone from the chemo, then make sure to bring a cushion to sit on when you are at disney, because bus seats are hard plastic, many rides have the hard plastic seats too, plus the same is true at the shows, if he transfers seats. It was painful for my mom to sit on the hard seats, seems like a lot of chemo patients either gain a ton of weight from all the steriods, or they loose a ton from all the nasia going on..

You may also want to plan what meals you are going to have at your resort, vs in the parks. you can look at allearsnet dot com They have all the menus there. Reason again, if he is having problems keeping food down, finding places where the food might agree with him. unless your able to cook back at your resort.

Depending on how many meds he is on, make sure to bring them with you into the park. Maybe get a small pill box, and label and put a days worth of pills there, so your not in the park and forgot this or that, and he'll be in more pain, or nasiated because of something being left back at the resort. Plus, as a reminder. If he or you are on any pain meds, that require a script, and can not be just called in. Make sure to ask your doc for a script for the length of time you are there, in event those pills are lost.

Have a happy trip!!

 

[SueM in MN]

zumbergc has many good points
Those points made me think of some others.

3-4 hours of action, no matter if your in a scooter or not, can ware some cancer patients out the whole next day. Just depends on where they are in their journey. So, keep that in mind.

Also, people think of using an ECV as a power conserver, which it is. But at the same time that it helps you to be less physically tired, it can be very mentally tiring. Using one is similar in many ways to driving a car. You need to have a level of awareness of what is going on around you and plan what you are doing while you drive. You need to be alert to things like whether the area you are in has curbs and where the curb cuts are. You also need to be watching for other guests, who may pop out unexpectedly.
So, I would agree with zumbergc that using a scooter may not increase the time that he can be out in the parks that much.

Also, depending on what pain medication he is on, what continuing deficits he has from his brain injury and what his reaction is when he has had too much stimulation, he may not be alert enough/in good enough condition to use an ECV.
When you go consider how long he can be out for shopping, etc. I'd suggest going to a store like Target or a grocery store and trying out one of the ECVs they have for their customers to use. Somewhere like Walmart also has ECVs, but Walmart stores are generally harder to be in because the aisles are narrow and they have lots of displays blocking the center of their main aisles. Save Walmart for later practice.
Also keep in mind that the store ECVs are much bigger and more cumbersome to drive than any you will rent at WDW (plus they have a big shopping cart on the front).

You may also want to plan what meals you are going to have at your resort, vs in the parks. you can look at allearsnet dot com They have all the menus there. Reason again, if he is having problems keeping food down, finding places where the food might agree with him. unless your able to cook back at your resort.

The DIS site also has menu information. Between the 2 websites, you should have a good idea of what is available.

Depending on how many meds he is on, make sure to bring them with you into the park. Maybe get a small pill box, and label and put a days worth of pills there, so your not in the park and forgot this or that, and he'll be in more pain, or nasiated because of something being left back at the resort. Plus, as a reminder. If he or you are on any pain meds, that require a script, and can not be just called in. Make sure to ask your doc for a script for the length of time you are there, in event those pills are lost.

Have a happy trip!!

It's very easy to forget to take pills on schedule while on vacation. Time seems to stand still and all of a sudden it's later than you thought and you missed a dose. Out of your familiar environment, it's also easy to forget whether or not a dose was taken. A pill box with just the next dose in it can be helpful for that. If you look and the box for that dose is empty, you know it was taken.
Setting an alarm for medication times can also be helpful (most cell phones have the ability to set an alarm clock).
Also, if your prescriptions are at a pharmacy that has an Orlando area store, you may be able to temporarily transfer a prescription to that store if you need more while in Florida. Check with the doctor and the pharmacy since that may not be available with some pain meds or he may be on drugs that may not be readily available at that pharmacy (they would have to order some, which could take several days to get).
Since you will have a car, you can go off-site to get things you need. Before you go, it may be helpful to look up directions from place to place on the internet and print them up so you have an idea where to go.

Also, ask the doctor for a short summary of your DH's care/condition, MD phone numbers, medication list and recommendations of where to go in case of a problem. Hopefully, you won't need any of these, but it will make things easier to have them just in case.

 

[lippylulu]

I really appreciate all these great ideas. He is able to drive a car, but it is true that complicated driving is mentally taxing so we avoid that. Thanks for cluing me in on the weight of a Disney ECV vs. a rented one. Actualy, we would benefit from a basket on the ECV since I have trouble carrying stuff. Also I see that that when you rent privately there is an umbrella. Not sure how much thy woudl relly help with staying out of the sun, but that would be an advantage for us. Are teh heavier ECV's harder to maneuver?

Luckily, my husband is only on one chemo pill per night and has NO side effects (so far knock wood). He may even be off chemo while we are away because I know at some point he goes off it for 2 weeks. His fatigue started with the cancer and has remained fairly constant, probably due to the cancer itself, brain trauma, or antiseizure meds (used as a preventative only---he has never had a seziure even when he was half dead and had a double craniotomy). He has shown some recent imrovement in energy which coincides with his good response to the chemo in terms of his cancer so maybe in amonth he'll be even better!

I work in healthcare myself and can provide a very clear picture of his condition if needed, but definitely realize how anyone can mess up meds while on vacation. Heck, I have 2 dogs with one on seizure meds and I've messed up twice and given the poor 16 year old little dog the big dog's seizure meds simply on a stressful morning because they both came running for the cream cheese I hide the pill in! We traveled recently a few days and I made good use of zip lock bags where I could write the date, time and meds on the bag to keep it all straight and carry easily.

Keep this excellent advice coming and pray for us that he stays stable enough that we make it to Disney this time!

 

[jt'smom]

hi lippylulu, i have primary brain cancer and have travelled to disney, so i COMPLETELY understand the stamina issues along with being overwhelmed from too much visual stimulation. definitely get an ecv, it will save you all much heartache and frustration. i personally did not want to get one due to the enormous amount of weight i gained from steriods... i didn't want to deal with the accusing looks of being "one of those fat people" who get an ecv because they are lazy. but after a few days i broke down and rented one and our trip was so much better. i suspect he is on temodar, and if he is, maybe his NO can alter his schedule so he will be on an off week. i found my biggest problem was with being overwhelmed with the visual stimulation and huge crowds, but since I rode very little, i just found comfy shaded spots to chill while my dh and ds were doing rides. if he wants to ride things, make sure he get specific instructions on what to avoid from his NS and NO. because of my craniotomy, i can't ride anything that causes pressure changes (like mission space) and most of the thrill rides. i did try to do soarin and because of dizziness/unsteadiness on my part was terrified that i was pitching forward and falling the whole time. my brain can't process that much at one time now. i hope y'all have a wonderful time and create lots of memories for your daughter with her dad. being terminal sucks, but it has caused me to really live my life to the fullest with my family so they will have the best memories of me.

 

[lippylulu]

hi lippylulu, i have primary brain cancer and have travelled to disney, so i COMPLETELY understand the stamina issues along with being overwhelmed from too much visual stimulation. definitely get an ecv...i hope y'all have a wonderful time and create lots of memories for your daughter with her dad. being terminal sucks, but it has caused me to really live my life to the fullest with my family so they will have the best memories of me.

JT, Best of luck and yes, he is on Temodor. I copied your post and emailed it to my hubby so he can hear from someone in a similar situation about he ecv. May I ask, did yo rent for the entire week or at the parks? Any trouble getting one at the park? Thank.

 

[jt'smom]

i just rented at the the parks for the last 2 days of my 6 day trip. i wish i had done it earlier! we were there the first week of august and it was very, very crowded but i was still able to get an ecv. we want to try and go again in jan '09 if we can and this time i will definitely rent offsite. as a side note, it took me a couple of weeks to recover from our trip. i think that was in large part because i tried to suck it up and walk most of the week.

 

[mechurchlady]

JT, Best of luck and yes, he is on Temodor. I copied your post and emailed it to my hubby so he can hear from someone in a similar situation about he ecv. May I ask, did yo rent for the entire week or at the parks? Any trouble getting one at the park? Thank.

It is easier to rent one off site for the whole week. They will drop it off at the hotel lobby or your room. You can then practice around the resort and make sure the ECV is satisfactory. You would not have to carry a cushion into the park as he will probably need one. He can carry from the carry stuff in the basket. You pay one time where as at the parks you would have to get into line each time and have many receipts and if you were to park hop then there would be more walking.

Magic Kingdom is a long long walk just from the parking lot to the ferry then to the ECV rental. I arrived very early and was near the front of AK parking and it was over a block, maybe two to the ECV rental. Instead you could park and he could ride. I would say based on his health off site would save him a lot of energy.

There are disabled vans for rent that would not require the breaking down of an ECV, not sure where but I know they are out there. Except for the busy times there are in park ECVs available but for me I would rather rent offsite and save the time and hassle.

 

[lovetoscrap]

While you can rent a great scooter from anyone listed in the FAQ I want to put in a personal recommendation for Randy's based on your needs. He delivers the scooter to you personally and will show you how to take it apart and put it together. That alone is invaluable. I suggest you take a digital photo of each step as he shows you so you can remember it. When you reserve let him know you want to be able to put it in a car.

And once you take the scooter apart, the chances are pretty good that your 11 will be able to lift the pieces in and out! My 12 year old helps me with my scooter all the time. I am able to help, but I think Randy has a scooter that breaks down more than mine. Oh his the seat comes off, the front comes apart from the back, the batteries come off and then you just have the back part which I think is the heaviest (it is the one in my siggy picture). If you have space in your luggage you might bring an old sheet with you just to cover the trunk/car before you put the scooter in, just in case of any oil smears or dirty tire marks.

Have a great trip!