Where to stay with Multiple Sclerosis

[Momtoapug]

UPDATE we have booked offsite. We booked through Costco and found a deal at Sheraton Vistana Villages Resort Villas (the one with the pirate ship at the pool ). We are staying six days, with base tickets for 5 days, for three people. This is a 2BR villa and the total is $2850, including tickets. We thought that was a good deal!
I think it will be neat to give off-site a try, especially since we are driving and will have our own car. I hope to be able to check out a few resorts while there. I think we will know pretty quickly if we want to do off-site again, or try onsite next time. I'll be happy to send an update in a few weeks; we are going March 14th!

Thank you all so much for your help and great advice.

hello!
It's my first trip to Disney.
I am traveling with husband and 4 year old daughter. September.
The purpose of the trip is to go on a grand Disney trip while I am still healthy. I am in early stage ms but it has been acting up a lot lately. I have also been having TIAs.
My ms leaves me extremely fatigued after very little activity- example- sometimes I cannot walk Back to my car after grocery shopping. I realize that Disney is miles of walking. But I'm determined to make this trip and memory for my daughter while I am able.
My question is - which resort to stay at?
Villas at Grand Floridian 1 br suite
Or
Royal rooms at POR ?

Goals - minimize walking at resort itself
Easiest transportation to magic kingdom
Daughter has amazing princess themed memories
Some other factors:
Husband snores. BAD I sleep
In separate room at home
Daughter is an older soul and sensitive. She doesn't enjoy huge crowds or crazy splash pads and that kind of thing. A crowded bus might be overwhelming for her for example. A Disney junior show at the pool might be the opposite of fun for her. When I hear about the Cinderella dance at GF that is definately something she'd love

Thoughts? The Royal rooms are so tempting and much more affordable but we can swing it for the GF. We just have NO IDEA how big of a deal the bus transportation is or isn't....etc

Thank you all!

 

[minnie mum]

Welcome to the Dis.

Not sure when you are going, but you may find the heat aggravates your problems. Above all else keep as cool as you can and keep hydrated.

Regarding your fatigue. Disney vacations require miles of walking every day, both at the resorts and in the parks. Even the GF can require lengthy walks depending on where you're going. I would, in the strongest terms, recommend that you rent an ecv from an off site agency for the length of your stay. You can conserve your energy for the fun part of your vacation, and not waste it on just getting there. With an ecv, resort size becomes moot.

If your DH's snoring is that big a problem, and earplugs for you and your daughter isn't a solution, then I would think that a 1 bedroom suite or villa would be the only solution. With an ecv negating the concern for walking and resort size, you could explore some of the other less expensive suite or villa options. GF, while handy to MK, is one of the most expensive. Even if your resort isn't princess centric, DD can still have princess contact morning, noon, and night with the various opportunities around WDW.

Regarding your daughter's problems with crowds and noise. I'm not sure how well she would do in the parks, never mind a bus. The parks are much more crowded, noisy, and chaotic than a resort splash pad. You can buy ear protectors to dampen noise, but I'm not sure how you could avoid crowds. You'll even find some crowds at resorts at certain times of the day. But the moderate and deluxe resorts do tend to be generally quieter and more restful than the values.

No matter what resort you stay at, eventually you'll be on a bus to at least 2 or more of the parks. The only way to avoid the buses completely is to travel by car (in which case rent an ecv that is made to come apart for easy storage in the trunk) We've used Disney buses for all of our visits (I use a wheelchair), and have never had problems. But yes, they will be crowded at times. Especially at park open and close.

There are lots of folks here with years if experience, so feel free to ask any specific questions you have. I hope you all have a great time.

 

[gap2368]

if you will be at MK most you may want to look at the contrarery ( SP?) it is an easy walk ( or roll as mini said suggest)

 

[Momtoapug]

Welcome to the Dis.

Not sure when you are going, but you may find the heat aggravates your problems. Above all else keep as cool as you can and keep hydrated.

Regarding your fatigue. Disney vacations require miles of walking every day, both at the resorts and in the parks. Even the GF can require lengthy walks depending on where you're going. I would, in the strongest terms, recommend that you rent an ecv from an off site agency for the length of your stay. You can conserve your energy for the fun part of your vacation, and not waste it on just getting there. With an ecv, resort size becomes moot.

If your DH's snoring is that big a problem, and earplugs for you and your daughter isn't a solution, then I would think that a 1 bedroom suite or villa would be the only solution. With an ecv negating the concern for walking and resort size, you could explore some of the other less expensive suite or villa options. GF, while handy to MK, is one of the most expensive. Even if your resort isn't princess centric, DD can still have princess contact morning, noon, and night with the various opportunities around WDW.

Regarding your daughter's problems with crowds and noise. I'm not sure how well she would do in the parks, never mind a bus. The parks are much more crowded, noisy, and chaotic than a resort splash pad. You can buy ear protectors to dampen noise, but I'm not sure how you could avoid crowds. You'll even find some crowds at resorts at certain times of the day. But the moderate and deluxe resorts do tend to be generally quieter and more restful than the Deluxes.

No matter what resort you stay at, eventually you'll be on a bus to at least 2 or more of the parks. The only way to avoid the buses completely is to travel by car (in which case rent an ecv that is made to come apart for easy storage in the trunk) We've used Disney buses for all of our visits (I use a wheelchair), and have never had problems. But yes, they will be crowded at times. Especially at park open and close.

There are lots of folks here with years if experience, so feel free to ask any specific questions you have. I hope you all have a great time.

Wow thank you for all of the advice!
It's good to know the buses aren't bad. It's hard for my visualize without having "done"

Welcome to the Dis.

Not sure when you are going, but you may find the heat aggravates your problems. Above all else keep as cool as you can and keep hydrated.

Regarding your fatigue. Disney vacations require miles of walking every day, both at the resorts and in the parks. Even the GF can require lengthy walks depending on where you're going. I would, in the strongest terms, recommend that you rent an ecv from an off site agency for the length of your stay. You can conserve your energy for the fun part of your vacation, and not waste it on just getting there. With an ecv, resort size becomes moot.

If your DH's snoring is that big a problem, and earplugs for you and your daughter isn't a solution, then I would think that a 1 bedroom suite or villa would be the only solution. With an ecv negating the concern for walking and resort size, you could explore some of the other less expensive suite or villa options. GF, while handy to MK, is one of the most expensive. Even if your resort isn't princess centric, DD can still have princess contact morning, noon, and night with the various opportunities around WDW.

Regarding your daughter's problems with crowds and noise. I'm not sure how well she would do in the parks, never mind a bus. The parks are much more crowded, noisy, and chaotic than a resort splash pad. You can buy ear protectors to dampen noise, but I'm not sure how you could avoid crowds. You'll even find some crowds at resorts at certain times of the day. But the moderate and deluxe resorts do tend to be generally quieter and more restful than the Deluxes.

No matter what resort you stay at, eventually you'll be on a bus to at least 2 or more of the parks. The only way to avoid the buses completely is to travel by car (in which case rent an ecv that is made to come apart for easy storage in the trunk) We've used Disney buses for all of our visits (I use a wheelchair), and have never had problems. But yes, they will be crowded at times. Especially at park open and close.

There are lots of folks here with years if experience, so feel free to ask any specific questions you have. I hope you all have a great time.

thank you for your kind and thoughtful response with so much detail!!! this is my first trip and first experience on Disney forum and you are so kind!
I think we are doing GF. Everything I hear about POR is that it's wonderful
But a good bit of walking ... I like your ECv suggestion, too! Thank you again

 

[Allison]

if you will be at MK most you may want to look at the contrarery ( SP?) it is an easy walk ( or roll as mini said suggest)

The walk to MK is one of the reasons I wouldn't recommend the Contemporary without an ECV. I have a friend with MS and that 10 minute walk would be a challenge for her especially compounding it with all the other walking.

 

[DisneyOma]

Get your hubby to the doctor about the snoring before the trip - he may have sleep apnea and could benefit from a CPAP. And that way you wouldn't have to suffer through the snoring at home or on vacation either!

Rent an ECV for the trip from an offsite vendor, take your time, set your expectations low, and get the 'perfect' vacation image out of your head right now. It will be a wonderful vacation if you don't strangle it with too many visions of perfection Not saying you were doing that, but I know how it happens, especially on a first trip, and with thoughts that it may be the only one 'while you are able'. Been there, done that.

Take pictures, but don't spend the whole time trying to capture the trip - spend more time actually being in the moment. Slow down and enjoy the fine details Disney has sprinkled around the parks. Realize you won't be able to do everything, no matter how long your vacation is. Hmmm, what other mistakes have I made and can warn you about?

 

[gap2368]

The walk to MK is one of the reasons I wouldn't recommend the Contemporary without an ECV. I have a friend with MS and that 10 minute walk would be a challenge for her especially compounding it with all the other walking.

this is why I think the OP should get a ECV or wheel chair any hotel will have a walk and then there is the parks too.

 

[Sunnywho]

I've been to Disney World with MS for the last ten years. Disney is very disability friendly. Have you considered renting a car? The air conditioning and the guarantee of a seat and the speed of going straight to the car and then straight to where you are going can make it worth it. September is very hot still in FL. Waiting at the bus stop in the heat can get bad. The monorail resorts would be very nice with the monorail transportation and also for the ease of going back to the room to rest if needed. My husband also snores (even through his CPAP machine) and sleep is really important with MS fatigue. Have you considered the Art of Animation suites? They'd be well themed for a child that age and there's two separate sleeping areas. I would only do this though if you rent a car. I would not do the royal room since you'd all be in the one room. Also in September, you should be able to get free dining.

 

[DisneyOma]

I've been to Disney World with MS for the last ten years. Disney is very disability friendly. Have you considered renting a car? The air conditioning and the guarantee of a seat and the speed of going straight to the car and then straight to where you are going can make it worth it. September is very hot still in FL. Waiting at the bus stop in the heat can get bad. The monorail resorts would be very nice with the monorail transportation and also for the ease of going back to the room to rest if needed. My husband also snores (even through his CPAP machine) and sleep is really important with MS fatigue. Have you considered the Art of Animation suites? They'd be well themed for a child that age and there's two separate sleeping areas. I would only do this though if you rent a car. I would not do the royal room since you'd all be in the one room. Also in September, you should be able to get free dining.

Cars can get very hot sitting in the parking lot, so they'd have to wait while it ran and cooled down. We found the buses to have very good AC when we were there last August.

 

[mamabunny]

[QUOTE="DisneyOma, post: 55718938, member: 559171"...Take pictures, but don't spend the whole time trying to capture the trip - spend more time actually being in the moment. Slow down and enjoy the fine details Disney has sprinkled around the parks. Realize you won't be able to do everything, no matter how long your vacation is. Hmmm, what other mistakes have I made and can warn you about? [/QUOTE]

To expand on the fine advice DisneyOma gave you: get a PhotoPass/Memory Maker with your vacation - and let Disney's own trained photographers take your pictures! You'll notice them everywhere - but especially in those "memory-worthy" spots, like in front of Spaceship Earth at Epcot, or right down the middle of Main Street in the Magic Kingdom with the castle as the perfect background!

Park your ECV, and hop off for the pictures if you want - but above all, please just use the ECV as a tool to have the best possible trip with your sweet little girl and your hubby.

And consider the Family Suites at AOA (Art of Animation Resort at WDW) - it will give you more space and sleeping options for a reasonable rate.

 

[Nevada Jen]

You got good advice. I think the ECV is the way to go for your situation. Then you don't have to worry as much about resort location or where you end up in the resort. I do think a monorail resort might be easier with an ECV because then you just drive on and don't have to deal with trying to park on a bus. Having an ECV might also give your DD some personal space on the bus. It will also give you a way to carry stuff, which will ease the stamina needed even more. And definitely get the memory maker pass before your vacation. You really can enjoy the park for much more when you are not worried about capturing the moment. If I were you, I think I would be torn between the Disney transportation and a personal car. I personally HATE public transportation but I don't know how hard it is to break down and put an ECV back together. If you are going to get a car, make sure you bring your disabled parking pass from home.

 

[Nanajo1]

I definitely think an ECV would be beneficial even if you don't think you need it at home. WDW is so vast you'll want to conserve your energy. Bus drivers are very helpful when entering and exiting. Very often you have to back off the monorail. After a couple of times it becomes second nature. Remember your little one should not ride with you on the ECV. Personally I really don't like getting into a hot car after a day at the parks. I have had no problems with WDW transportation. Have a great trip.

 

[chelynnah]

I have ME/CFSas well as other pain issues. I struggled through 1 Disney trip in agony, and two days into a second trip before giving in and renting either a wheelchair or an ECV. That changed everything! I was able to thoroughly enjoy my trip and not be in agony, and hubby enjoyed it more as he didn't have me grumping at him because of my pain. This last trip we rented a wheelchair from offsite which I used for most days, but after a few 'discussions' about hubby's lack of steering and stopping ability we interspersed it with the odd onsite ECV rental so I had more control. I have since looked into an offsite rental ECV that will break down for easy transport, yet still has long battery life, and our next trip I will rent that.

I don't need one in my every day life as I have my tricks and work arounds, as I'm sure you do too, but I have learned there is no shame using one for this kind of trip. You will be much less stressed and enjoy the trip so much more if you aren't worried about walking and the additional pain it will bring. And if you're happier andin less pain, you can help make it an awesome trip for everyone, especially DD.

(Edited for typos)

 

[bashuck]

We went with another family and the other mom had recently been diagnosed with MS. Her plan was mostly to just deal with it and take more breaks. Then luckily, and I mean it, she broke her foot and had to consider other options. By the time the trip arrived she would periodically wear a removable boot so she knew walking exclusively wasn't an option. I had a friend who had tore his achilles in the past and had a little scooter type device where the bad leg kneels on it and uses the good foot to keep it going. She acknowledged during the trip that this device was so much better for her with only 1 good foot than walking would have been with both feet fine. You would have the option of alternating which foot does the work so it should be even easier. Also very easy to bring on the busses/boats and such. Wish you the best of luck.

 

[memakwed]

I have MS and have done Disney many times since my diagnosis. Each trip is a little harder than the last but I still walk on my own. We love POR. We have done the royal guest rooms. Building 90 or 95. There is a quiet pool right there that sounds like might be good for your child verses a main pool with slides and crowds. My DS doesn't like splashy kids. the rooms are nicely decorated so I think she would get the princess real Disney feel. The sink faucets are Aladdin lamps, princess pics on walls ect. and the light up headboards make it special. That being said without many transportation options there's the bus which starting out early is ok for me- most energy early in the day. Buses are a bear later in the day and especially at night. At closing you are going to stand more likely than sit and I know standing can be a painful, tiring experience. We make every effort to miss the crowds when taking the bus to make it more bearable and put the odds in our favor for a seat. Some days we just need to drive to the park like epcot it's so much easier to get back after illuminations. not fighting as much of a crowd and waiting so long for a bus. As for GF, it is on the monorail and I think that is a bonus. Odds of sitting for us have always been a little better verses a bus and it gets you moving faster and when literally every second counts before you crash its a good choice. Monorail will get you to MK and Epcot. GF has elevators, I request 1st floor at POR. 1900 Parkfare is right there for a character Cinderella dinner in the hotel how convenient would that be to get back to the room. There are pluses and minuses for both but we always go back to POR for convenience, location, quiet pools, royal guests rooms and quiet atmosphere. I can't help you with snoring you'll be in the same room at POR but again with my fatigue level once I hit the bed I am out if I can get past the pain. FYI tips I would suggest would be if you don't have a cooling vest is to take cooling cloths, and I find those crushable icepacks that get cold when you crack them to be so helpful if the heat gets to me. Also one last thought we take advantage of the price point of POR so we can stay longer. This allows me to do everything at more of my piece that just constantly going. Maybe that could be an option to help you if you can deal with the snoring being in one room. We go for two weeks now which has made it more bareable but necessary for me to function. Hope this helps you choose the right resort.

 

[maryserv]

It has been a while since I've posted. We are here right now, staying at the Bay Lake Towers which is part of the contemporary. When I was first dx'd many things simply sucked the like out of me. I was on Copaxone and it did little for me. We live in the Houston area, so I knew to expect the same types of symptoms from heat and humidity. We did one trip in late June and I said never again. Many years have passed and I am on Tysabri now. My symptoms are decreased and less intense. I also have 13 years of ms experience under my belt. A couple of thoughts that may be here, but I'm seeing a lot of ecv suggestions mostly:

1. If your doc is an MS specialist, tell him your therapy isn't working anymore and change it. This can change your whole life, I promise. Or get a new doc that is a specialist.
2. Cooling vests are heavy. There are the kinds with ice packs and the evaporative type. It is freaking humid in Orlando in the summer and evaporative vests are not as effective in humidity. I have both types of vests and have used both at DW. I no longer do this. I have a misting fan and a chilly pad.
3. Do not come to Florida in the summer if you have intense heat sensitivity. You may also have humidity sensitivity (sort of). I can deal with dry heat better than humid heat.
4. Find a way to excercise in a group before your trip. I joined the Y 2 months ago and have been working out 4 days a week for 2 hrs a day. I am doing better on this trip than my DH! I attribute this to working out.
5. Since you have not been to Disney you will need to research each place you are going ahead of time to find little pockets of A/C and a quite place to sit out of the sun. Make sure your family knows that you may have to stop in a shop just to soak up the A/C. Always have water in a bottle and drink it.
6. Schedule non- park days. Sleep in. Spend more time at night during night time EMH than during a warm day in a park. Take several pairs of shoes.
7. Stop at guest services your first day and get a disability services thingy placed on your magic band (will be for everyone) if you are going at a warm/hot time of the year. Since we are here in June, I have done this and used it yesterday during the day at Magic Kingdom. I will use it today at animal kingdom.
8. Feel free to ask anyone that has Disney MS experience by private message including me.

 

[bopper]

Also...tell your DH to get a sleep study...maybe he has sleep apnea and needs a CPAP which helps SO MUCH with the snoring.

 

[Weedy]

A suggestion Have you considered a cruise insteadof the parks? Disney Cruises are wonderful. Much more layed back. Lots of chances to see the Disney Princesses. The shows are great.
You can book 2 connecting cabins.

The one bad thing is the pools get very crowded during the day but if you go early in the morning or in the evening it's not bad.

 

[Momtoapug]

I have ME/CFSas well as other pain issues. I struggled through 1 Disney trip in agony, and two days into a second trip before giving in and renting either a wheelchair or an ECV. That changed everything! I was able to thoroughly enjoy my trip and not be in agony, and hubby enjoyed it more as he didn't have me grumping at him because of my pain. This last trip we rented a wheelchair from offsite which I used for most days, but after a few 'discussions' about hubby's lack of steering and stopping ability we interspersed it with the odd onsite ECV rental so I had more control. I have since looked into an offsite rental ECV that will break down for easy transport, yet still has long battery life, and our next trip I will rent that.

I don't need one in my every day life as I have my tricks and work arounds, as I'm sure you do too, but I have learned there is no shame using one for this kind of trip. You will be much less stressed and enjoy the trip so much more if you aren't worried about walking and the additional pain it will bring. And if you're happier andin less pain, you can help make it an awesome trip for everyone, especially DD.

(Edited for typos)

I am only
Now seeing this and want to thank you for your genuine advice and encouragement and for sharing your experience. My MS has progressed and this year I will need an ECC or wheelchair and I am stressed about my daughter seeing me use a chair (she hasn’t before)...thank you. Your post helped me.

 

[Momtoapug]

I have MS and have done Disney many times since my diagnosis. Each trip is a little harder than the last but I still walk on my own. We love POR. We have done the royal guest rooms. Building 90 or 95. There is a quiet pool right there that sounds like might be good for your child verses a main pool with slides and crowds. My DS doesn't like splashy kids. the rooms are nicely decorated so I think she would get the princess real Disney feel. The sink faucets are Aladdin lamps, princess pics on walls ect. and the light up headboards make it special. That being said without many transportation options there's the bus which starting out early is ok for me- most energy early in the day. Buses are a bear later in the day and especially at night. At closing you are going to stand more likely than sit and I know standing can be a painful, tiring experience. We make every effort to miss the crowds when taking the bus to make it more bearable and put the odds in our favor for a seat. Some days we just need to drive to the park like epcot it's so much easier to get back after illuminations. not fighting as much of a crowd and waiting so long for a bus. As for GF, it is on the monorail and I think that is a bonus. Odds of sitting for us have always been a little better verses a bus and it gets you moving faster and when literally every second counts before you crash its a good choice. Monorail will get you to MK and Epcot. GF has elevators, I request 1st floor at POR. 1900 Parkfare is right there for a character Cinderella dinner in the hotel how convenient would that be to get back to the room. There are pluses and minuses for both but we always go back to POR for convenience, location, quiet pools, royal guests rooms and quiet atmosphere. I can't help you with snoring you'll be in the same room at POR but again with my fatigue level once I hit the bed I am out if I can get past the pain. FYI tips I would suggest would be if you don't have a cooling vest is to take cooling cloths, and I find those crushable icepacks that get cold when you crack them to be so helpful if the heat gets to me. Also one last thought we take advantage of the price point of POR so we can stay longer. This allows me to do everything at more of my piece that just constantly going. Maybe that could be an option to help you if you can deal with the snoring being in one room. We go for two weeks now which has made it more bareable but necessary for me to function. Hope this helps you choose the right resort.

I am really moved by all these replies everyone is so honest open and helpful. And strong! Thank you for sharing your opinions and tips and tricks and compassion