Mom with MS

[janskin]

My husband and I are scheduled to take our daughters, 13 and 8, to Disneyworld for a week at Thanksgiving. I was diagnosed with MS last summer and now I am beginning to worry about the trip. I get tired easy and am not suppose to get overheated. I hate to make my girls miss the trip.....but I just don't think I will be able to keep up with them. What do you think? Any suggestions?

Thanks,
Jan

 

[Talking Hands]

ECV definitely.
You shouldn't have to worry too much about overheating around Thanksgiving. It gets cool around that time of year. In fact I nearly froze right after Thanksgiving this year.

 

[Cheshire Figment]

I would agree completely with Talking Hands.

I think you should rent an ECV from an off-site company. A wheelchair would work, but pushing a wheelchair can get very tiresome, especially if you are not used to it. Also it depends on the weight of the passenger and the condition of the pusher(s).
Some information for off-site rentals are:

Walker Mobility:
1-888-726-6837
www.walkermobility.com

Care Medical:
http://www.caremedicalequipment.com/

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html

I have used Walker a few times. They will ask for a credit card and charge it the day before arrival. They will deliver the ECV to your hotel bell services before your arrival and pick it up there after your departure. Their rates, especially for longer than a week, are much better than Disney's. Also, their scooters are much better.

You don't say if you are renting a car or what. If you are using a car for getting around, the ECVs break down into five pieces, the heaviest about 39 pounds. They take about a minute or so to take apart and about two minutes (once you are used to it) to put it together.

Another suggestion is find out your state's requirements for a temporary disabled hang tag and get the paper work and have your doctor sign off on it. The tag will allow you to use any of the handicap parking areas (which will be a necessity). Also, with the policy of charging for valet parking, with a handicap hang tag the fees will be waived. Also the valets will usually volunteer to assist in loading/unloading an ECV. In Virginia I printed the required form from the DMV website. When I took the completed form to the DMV Office it took less than 15 minutes from the time I walked in until I had my tag.

An ECV will give you the freedom you need. You might want to go ito a major grocery store near your home; many have ECVs available for use within the store so you would be able to get used to one. Just realize the rentals are smaller and MUCH more maneuverable than the one in the stores (faster too).

 

[Nanajo1]

Janskin,
I've been to WDW many times before and after my MS diagnosis. The main thing to remember is to listen to your body! Keep hydrated and cool. If you feel yourself tiring then find some place in the shade to sit and rest. There are First Aid stations at all the parks if you find you really need to lie down. I find I do better earlier in the day so I plan to get to the parks at opening and leave when I get tired and return later if I'm up to it. I now use an ECV but for the first few trips I didn't. It all depends on what your limits are. Please feel free to ask any questions. There are many of us in the "been there, done that " club.
Have a great trip.

 

[Gail T AGAIN]

I have gone 3 times afer being diagnosed with MS. Sure I get hot, i Get tired but I listen to my body and take rests as needed, drink plenty of water and just enjoy my time on my vacation. Sure it isnt like when I was 20 going there but then again I am going on 46 and MS or not my body is pooping out.

 

[SueM in MN]

Looks like you got some helpful expert advice.
I just wanted to put in a plug for the First Aid stations. They are quiet, restful places where you can go to get away from the bustle and heat of the park for a little while. And the CMs there are very nice too.

 

[ghcoughlin]

Janskin relax and enjoy the planning of your trip.I was in your boat back in 2001.I was so worried I wouldn't keep up with the family due to my MS.To top it off we were going in September,a very hot and humid time.I was getting nervous about the trip not being the dream trip I planned for our DD and DS.Well EVERYTHING worked out.I told myself I'll deal with any challanges when or if they arise.We have been back 3 more times since.Now DH thought we should go the end of August.I'm all for that
The weather in November will be great for your MS !!There is alot of great advice on this thread from other MS vets.Do your research and ENJOY.I find staying on site is a must for us.This way if I want to rest the whole family doesn't need to leave the parks on my account.

Heidi

 

[dizzyintx]

Hi Jan,
I had only been dx. with ms for 6 months when I first went to wdw. Everone insisted I get a manuel wheelchair. I did and I'm so glad I did. My dh really needed it. His back went out on one of the coasters and he was unable to walk, so I pushed him the last 3 days. I didn't need the w/c but he sure did. Now I'm in a power chair. I'm going to the world this Nov. 15 th thru the 22nd. I don't think it will be that hot, but I plan on taking my cooling vest just incase. Do you have one? I am from Texas like you and very heat sensitive. They work great, but look like s**t. The msaa gave me mine. Walmart also sells cooling scarf that you put around you neck that are just a couple of $$. I wear the vest all summer and it keeps me going and going. You will be fine at disney, it's just so much fun you forget all about being sick. Just pace yourself, because you know if you don't you will pay for it the next day. I plan on taking a break midday either in the first aid station or my room. Kim

 

[Earstou]

I found instructions for these on a support group site I visit for my illness (arnold chiari malformation). I haven't tried them yet, but have seen them at craft shows made from bandanas. Since I have trouble with heat, I'll be taking some to WDW in a few weeks! Here's the instructions I copied:
Gel neck coolers: sew a tube of fabric about 24-36 inches long ...six to eight inches wide (before folding in half).
In the center sew a line of stitching to form a pocket about 8 inches from the middle...

..and place a couple tablespoons of the small granules sold to hold water in potting soil inside the tube. ( These crystals are nontoxic - so no need to fear having them around children ) . You can buy them at most any gardening supply source .
Then sew the other side of the pocket closed (again at 6-8 inches from the center).

Soak the whole thing in water about six hours to "charge " the granules, they will swell with water forming a soft swishy gel --and slowly evaporate when you're out in the heat providing several hours of cooling impacts . They can be recharged by soaking in water for just an hour or so.

The crystals gradually loose their ability to recharge over several months use ..so I make new ones each summer. I use old silk ties and scarves from the thrift store to get inexpensive pretty fabric to make these ...total cost in time and money VERY little.

I like to leave the ends long with only the center section of the tube filled with crystals ..that way I can tie them
around my forehead /or tie the ends like a scarf ect .
These too can be chilled in the fridge ...but don't freeze.

 

[SueM in MN]

Thanks for the cool instructions. I've seen those cooling bandanas for sale, but this way someone can make one that fits their own taste (instead of the "construction worker orange" that I have mostly seen for sale).