Looking for tips to survive WDW with M.S

[ghcoughlin]

I am hoping there are other M.S. patients who can help with making my trip a little easier
to tackle.Did you discover any hide aways in the parks to cool off?Ways to keep cool or rest?
I am very fortunate with my stage of the disease.But we all know when the heat turns up none of us feel too great.We will be there in late September.I don't allow my M.S. to control my life.So I certainly won't allow it to ruin our trip to WDW.I'm not naive I know I will need to adjust our schedule this time.The last time we went it was pre M.S. 4 years ago(also without children in tow back then)
Thanks alot,
Heidi

 

[Wheelsie]

WELCOME HEIDI!!

Altho I cant really help you with the MS stuff I can suggest that you might want to think about renting an ECV from a med place around WDW if you do a search on the subject you will find links to many websites of Med places where you can rent one to have delivered to your resort

 

[Nanajo1]

Welcome fellow traveler of the unpredictable journey of MS. I have been to the park 3 times since diagnosis and once a couple of months before( now I know why I was so tired!). The best thing is to pace yourself. I found if I push too hard one day I'll end up paying for it the next. I try to plan things with a flexible attitude. Know what is important to you. What do you want to do. Realize (as most people, able bodied as well, finally do)that you can't do EVERYTHING. I don't know if you have any limitations. I now need transportation, at home I have a power wheelchair I use for distance, at WDW I rent an ECV from Walker Medical. If you will be using "wheels" there was a great thread loaded with tips. I hope someone knows where to find it. The main key is to keep cool. I rode some attractions just because they were inside and had A/C. Some folks bring a mister fan, drinks lots of water and wear clothes that breathe. A floppy hat is great. Let me know what specifics would be helpful

 

[ghcoughlin]

Hi Nanajo1,Thanks for the suggestions.I too went to WDW pre MS.Then was diagnosed a couple months after.That explained why I couldn't walk around so much and was exhausted.I don't use any transportation.I have warned the family not to be alarmed if I need some wheels down there.NOTHING will get in our way of enjoying ourselves.I have put together a pretty relaxed itinerary...with plenty of flexability.Thanks again.I had a room mate at college from Acton.I spent many a weekend there.
Thanks again,
Heidi

 

[SueM in MN]

Hi. I'm glad to see you got some help already.
Here's a link to info about cool places and touring WDW in the summer. Also a link about heat related illness like heat stroke.
It's not the threads Nanajo was talking about, but at least it has some suggestions. I do have some stuff I saved from before we got on these new boards, so I might be able to search and locate some of the old suggestions (probably can't look before Friday though, sorry).

 

[mhopset]

Well, I know that MS and Muscular Dystrophy (which I have) are different. They are simailar in some ways though. They both begin with "m". Okay, enough stupid jokes.

Like some have said rent and ECV. Before I got mine from Jerry (there I go again). I rented one from Walker Mobility. They were fantastic!!!!! You will have no trouble with them. The ECV will be at your hotel when you arrive and when you are done with your trip just park it at the front desk and be on your way. You will not be disappointed you rented one believe me.

If you get as tired as I do, just take some time. Park the ECV on Main St. and people watch for about an hour. You will be entertained (still don't know why women wear black bras with white t-shirts).

One thing that really relaxed me was taking a day to myself. My wife and son were tired, and wanted to swim, and they don't enjoy EPCOT like I do. So I took my scooter and off to the bus stop I went. I was at EPCOT for about 6 hours by myself. It was not stressful at all. I know MS and stress are not fond of each other.

Don't get yourself worked up about anything. You will be fine. The things you are worring about will be no problem at all so don't STRESS. Have a great time

 

[meg&alliesmom]

The longer you can spend there, the less rushing you will have to do. If you aren't up for the rush of the lines and the heat, meet up with your family at a certain time and spend some time under a tree by the pool with a book. Or just relax in your hotel room with the A/C on and meet them when you feel you are up for it. I don't know how big your group is but if you have more than one cellular phone in the group, take them with you and send a signal. Ring them when you are leaving the hotel room so they can meet you at a certain destination. The last time we went was before being diagnosed with MS I was actually in the middle of an MS exacerbation at the time of our trip and didn't know it. Luckily it was mostly numbess to one side of my body and fatigue (could have been so much worse) Needless to say, we had a lot of down time and didn't have a clue as to why I felt so exhausted. We were there for two weeks which was wonderful so we had a lot of time to chill out. We don't really want to take the kids out of school because they are getting older and are trying to decide the best time to go. I am thinking about April vacation but I don't know how bad the lines would be. I have also thought about going at Thanksgiving time and pull the girls (ages 11 & 13) out for three days. I'd really like to do 5 days at DW and then do the DCL for 3 nights. Summer would be ideal because we could take our time but I don't really think I could take the heat no matter how much down time we had. I, like most of us MSers, will not let this disease control me. However, it does put a damper on making plans. My biggest dilema is the wheelchair thing. So many have said that is the way to do it. But I don't look "sick". I have fatigue, dizziness with vertigo, and hearing loss at the moment. I constantly stumble and look like I have been drinking. I have recently given in to using a cain when I need it. I don't know how much staring from others that I could take because I have heard with my own ears people in line saying they "they don't look like they need to be in a wheelchair" when they get go in faster than those in line. I welcome any and all suggestions. thank you.....