Where to stay with Multiple Sclerosis

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.
Wow thank you for all of this fabastic info. I am seeing it at the right time even though it’s a year or two later...these are all timely things I need to hear. I was on copaxone for a year and started having severe transient chest pain. My me has progressed...so again, thank you for the fantastic and compassionate tips and info above. God bless you!
 
@Momtoapug Just remember - that ECV is nothing more than a TOOL to let you have the best possible time on your vacation. If you need to explain to your little girl about it, just tell her this: "You will see lots of people at Disney World use scooters, and Mommy is going to use one too! It's just for Mommy to drive - you still get to walk and hold Daddy's hand!" If she needs further explanation, just tell her that you are using it to help your legs - just like someone might use glasses to help their eyes see better, or a hearing aid to help their ears hear better.

Trust me - she will be so busy looking at everything and having fun that you - on an ECV - will largely be a non-event after about 15 minutes.
 
@Momtoapug Just remember - that ECV is nothing more than a TOOL to let you have the best possible time on your vacation. If you need to explain to your little girl about it, just tell her this: "You will see lots of people at Disney World use scooters, and Mommy is going to use one too! It's just for Mommy to drive - you still get to walk and hold Daddy's hand!" If she needs further explanation, just tell her that you are using it to help your legs - just like someone might use glasses to help their eyes see better, or a hearing aid to help their ears hear better.

Trust me - she will be so busy looking at everything and having fun that you - on an ECV - will largely be a non-event after about 15 minutes.

and that extra energy you will have will please her so much.
 
You can do it! I have Spastic Paraplegia, which has some similarities to MS. And in our family, I'm the loud snorer, not DH. I know you only gave two choices, and of those two, I'd suggest the 1 BR at the VGF. However, I've stayed in the BCV and been very happy. And it's great advice about using an ECV. Never thought I'd say that-the first time I used an ECV, I cried! "I can't believe I'm actually using an ECV!" Then I waited for the ugly comments I was sure were coming. But you know what? 99% of people were so very nice and helpful. My only frustration was that you really have to drive defensively-people step in front of you without looking all the time. But that's more than offset by the number of people who rush to open the door for you, etc.
 
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.
Mine has progressed too :(. A lot of it is better, but I broke down last year and bought myself a ‘boot scooter’ that breaks down for Travel. I still don’t use it often but it’s there for trips to Disneyland Paris which we can drive to (they don’t do ECV rentals there) and it’s been a godsend on a couple of other occasions shopping or events st large convention centres. I’m much less self conscious about it now than I was when I write my first note to you.

I’m sure your daughter will be fine. She would much prefer a mum who can enjoy everything with her with assistance than a sore exhausted mum who can’t. All the best
 
I am considering a ECV this trip as well. Our kids are resilient and strong. They see us at our worst with MS in the house. My son is 14 now and has really started to understand the disease and not just "mom's sick". From a young age he's taken care of me when I was desperate and alone with him. I'm sure your child has done the same. Seeing us use an ECV will be different but we will still have the same fun with them and they can handle it.
 


This is such an encouraging thread. My MS was in remission for over 10 years but then hit me hard. I fought getting a cane and I tried not to feel like that I was giving into the disease. I recently bought a wheelchair for trips and outings that will have me out and about for hours. It’s still difficult for me to adjust my thinking and accept my limitations. This thread has me considering a future WDW trip which I’ve missed dearly since selling our DVC. In the meantime I’m considering a DCL vacation. Either one will be the first since my relapse. Fingers crossed!
 
OP, I know you've gotten a lot of advice, and I have nothing to add to it. I just want to add my story, as an encouragement to you (hopefully), especially since you mentioned your daughter seeing you use an ECV.

I'm now 34, and took my first Disney trip summer of 2016, when I was 33. At the age of 29, I had a hip replacement, due to complications from hip problems, and subsequent surgery at age 9. And my entire life, I've had some other minor (to me) physical limitations. I always like to think they are not obvious to others, but I think they are more obvious than I realize, because, despite being and looking young, I am nearly always offered a seat on a full bus/light rail, whether at Disney or the occasional times I take public transportation in my city. That's the intro, and here's my Disney story.

On our week long trip, the last day in the parks (Magic Kingdom) my friends rented a wheel chair for me. I'll be honest, I was kind of upset. I didn't feel I "needed" it, because, honestly, I can do longer distances. I'm just slow. Like... really slow, especially be the end of the day. I felt like I was taking advantage of something I shouldn't, and even hesitated sharing my story here at first, for fear that other people would think I was taking advantage of things. Looking back, I'm glad they did rent the wheelchair for me, because the next day was departure day, and I'm honestly not sure I would have navigated nearly as well at the airport the next day with my luggage (carry on) if I hadn't had that "rest" day the last day in the parks. (That being said, I'd still like to "conquer" Magic Kingdom without a wheelchair/ECV one day.)

One special thing that happened to me is I saw a young girl with a pink cast on her leg who was also in a wheelchair. She looked pretty sad to have to use the wheelchair. But the moment she saw me, she got this HUGE smile on her face and waved at me. I think I was probably the first younger looking person she saw in a wheelchair, and it made her feel not quite so alone. So... all that to say there are definitely advantages to renting a scooter/wheelchair and there may been some hidden magic pixie dust in that wheelchair/scooter too.

(P.S. I love sharing my full story to hopefully encourage others. Post here or PM me if you want to hear it.)
 

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