New DX of MS- need advice

[Cheshire Pirate]

My husband has just recently been diagnosed with MS. We're leaving for Disney World in 38 days. Right now, he's been okay'd by his MD to go, barring any new issues that crop up. He's experiencing what they call a flare right now, but has started a lengthy dose of steroids to try to relieve some of his issues and hopefully by the time we go he'll be feeling better.
This all came about quite suddenly, and now we're trying to prepare ourselves for our upcoming trip. There will be me, my husband, our two sons ages 4 and 2, and my mom.
His MD recommended he stay out of the sun and heat as much as possible. I'm guessing a GAC card will help somewhat with lines?
We're planning on just renting a wheelchair at each park as needed. Right now he's able to walk a bit just fine, but a large part of his current symptoms have to do with his feet, so we know we'll have to rent a wheelchair as needed. We don't want to bring our own as we'll be relying on the buses for transportation.
As for rides, we're planning on parking the kids' stroller and the wheelchair and him walking through the lines with us. Does the GAC card give him access to the inside or front of the line to wait for us to get through?
We're new to this and could use any help in pointing us in the right direction of information or experience would be appreciated. Thanks!

 

[crashbb]

Most of the lines are mainstreamed, so the wheelchair can go through them. Since you'll have the wheelchair, your husband should stay in the wheelchair through the line (for some rides, he can even stay in it on the ride itself). This is WDW's general answer for people who have stamina issues.

For rides where the wheelchair cannot go through the line, simply talk to the CM at the start of the line, and the CM will direct to you the appropriate route.

Most lines are shaded/indoors, so that shouldn't be a problem (the problem with sun/heat is between the lines - many people have great suggestions for that).

Check out Sue's FAQ sticky - lots of great information and pictures of some of the lines and ride cars.

 

[WheeledTraveler]

I would really suggest that he rent an ECV rather than a wheelchair. The rental wheelchairs you get most places are huge and heavy which means you would need to be able to push him and Disney is not an easy-pushing place.

An ECV (scooter) would give him his own mobility. He could park it in different places and walk through lines if he wanted, or most lines are mainstreamed and he could bring the ECV through the line with him. Rides that don't allow ECVs in the lines should have a wheelchair he could use if he decided he couldn't walk the length of that specific line.

Lines at Disney can be long and they do not have places to sit and wait (even if you have a GAC). Also, with a GAC (or a mobility device) you may end up waiting waiting longer (it's kinda a crap shoot where sometimes you'll wait the exact same amount as a non-disabled guest, sometimes it'll be less, and sometimes it'll be much longer). GACs do not shorten the distance of the line, either. Soarin' for example is 1/4 mile long as a walk whether there's no one there queued or whether there's a full line to the end of the 'typical' queue. I believe the Fastpass line is just as far a distance to walk.

As far as the head goes, if you can go earlier in the morning, take a break mid-day (worst of the heat) and come back in the evenings. Also, you might want to ask the doctor if he would be willing to write a prescription for a cooling vest that some people with MS have found useful. Otherwise using a good touring plan and fastpasses should help with a lot of your concerns.

Also, if he does plan on walking through ride queues and has problems with stairs the GAC may be beneficial for that (if he opts to use an ECV or wheelchair in the queues, the GAC wouldn't be necessary for that particular issue, obviously).

I'm sure other people will have other suggestions (and we do have several posters here with MS who can probably give you more specific information than I can).

I hope you have a wonderful trip!

 

[mickeymaker2003]

I would recommend bringing your own wheelchair (or rent an ECV from an offsite vendor). Park rental chairs are fairly difficult to push. Your husbands own chair would be more comfortable and easier to push through the parks. Don't worry about the wheelchair or ECV on the busses. If you can fold the chair easily, that would be great and your husband can sit on the bus seat.

 

[SueM in MN]

I don't have time to write much now, but wanted to add a few points:

- I agree with what the other posters wrote.

- the line at Soarin' is 1/4 mile in and 1/4 mile back put again after riding. The Fastpass and regular line are parallel to each other, so the same distance walked whichever line you are in.

- When you go to the disABILITIES FAQs thread, look at post one to get an index to where you will find which information.

- be aware of dehydration. It's important to avoid dehydration. Keep in mind that drinks with sugar, caffiene and alcohol may make you feel less thirsty when you drink them, but those substances can lead to dehydration.

 

[cmesq61]

Ditto to everything previously said...and double ditto the ECV. MS is different for everyone, and flare ups are, of course, worse than usual. I have MS and could never do it w/o the ECV. Nor would my family enjoy it as much if they were pushing me around. Pushing is tough work. Heat and exhaustion are my personal two worst enemies, and I've been to WDW both during and not during a flare up. Here are some of my personal tips/methods/suggestions for fully enjoying WDW with MS:

*sunscreen (I can't tolerate the special treated sun blocking clothing as it makes me too hot but others swear by it)
*a hat--not a puny baseball cap but a big hat with 360 degrees of brim
*hydrate
*afternoon nap/rest--we always leave the parks during the heat of the day, go back to the hotel, and I get into bed in the cool dark room. I don't always sleep, but the cool, quiet, dark for awhile hours does wonders.
*if you are having a bad day and need to leave the park--GO--RIGHT THEN. Don't push ypurself and think you can man-up cause that doesn't work, makes you worse in the long run, and anyway, this disease is not about manning up.

Read the stickys at the top-lots of good info. Hope you have a great time!

 

[tomboy_m]

Sorry to hear about the DX... I was given the diagnosis about 6 1/2 years ago and I know how scarey it can be. Glad to hear that you are still going to Disney. I went shortly after I was diagnosed and it was exactly what I needed to put things back in perspective. Life is unpredictable so enjoy the things you can as long as you can. As for advice...Rent a scooter or electric chair off-site. The manual chairs are not easily pushed and will leave anyone pushing exhausted in a very short period of time. Once you return to your resort you may find that the distance to your room from dining options and the bus are overwhelming after a day in the parks. The off-site rental would ensure that you have what you need the whole time you need it. We ended up renting a scooter for my mom when we were at Disney and it saved the trip.

 

[Sunnywho]

Very sorry too to hear about the diagnosis. It can be a lot to take in. I was diagnosed five years ago.

Disney World might be a challenge, especially with little kids too. My husband always takes the kids to the pool to give me some quiet rest at the hotel, this might be something you can do for him if he needs it.

The GAC can be useful. With my MS, when I get worn out, I can't take the overstimulation, so the alternative waiting area options are something of a godsend.

I pretty much skip all shows these days, if they're outside and hot.

Another tip I didn't know before was to consider the first aid stations in every park. He can go lie flat in the airconditioned cubicle if he needs to.

Just because he can still go to Disney World, does he want to go? If it is at all a stress during an already stressful time, it could be postponed to when emotions have settled. He also doesn't know right now what to expect of his course. Some people have a long time between relapses and recover completely or near completely.

He might also look into CCSVI, which is alternative and controversial, but I've had it done and it helped considerably.

 

[Cheshire Pirate]

Thank you all for the tips. Right now he is focused on going to Disney, as long as he doesn't need further treatment in the near future. He's just finished a round of Solu-medrol and started on Cellcept, and the next course of action would be Cytoxan, if he's not feeling any better in the next week.

We're considering renting an ECV through an offsite location, and I've been reading good things about Apple. I guess my next question is how hard is it going to be with a double City Mini jogger stroller (that we have already reserved from Orlando Stroller Rentals) and dealing with the scooter on and off the buses? Our plan right now is to get to the parks first thing in the mornings for rope drop and return to our room for quiet time/naps around lunchtime, and going back to the parks in the early evening for a few more hours. So I estimate we'll need the buses about four times a day. I don't know how we'd rent a car big enough for five people, an ECV and a double stroller, so how much of a pain would we be? This is our big concern right now.

He's still up and walking, but can't go far distances(think walking around a mall for about an hour is all he can handle). Of course, there's still a month left before we leave and he could be dramatically improved by then. Here's hoping. :

He's very much looking forward to going, wheelchair or not. He needs something good to look forward to.

 

[Apopper74]

Look into a cooling vest. In September it is still very hot and he will be glad he got one. Also go with the ECV. The wheel chair & stroller combo makes a very bad mix. The steroids should help greatly in calming the flare up but don't expect miracles. I am sending good thoughts.

 

[Piper]

I used Apple in Dec. and Jan (instead of bringing my own ECV) They were great. I don't find getting on the bus difficult--but that may be because I am used to my own ECV and parallel park it in my apartment all the time! You will have to fold the stroller whether you have the ECV or not.

If you haven't already done it, do read the FAQs at the top of this thread. There is a lot of really helpful information there. I still review them before any trip just to refresh my mind.

 

[bopper]

Seems to me that your DH would deal with the ECV on the bus, your mom would take the kids, and you would deal with the stroller.

 

[ccbayly]

All great advice! I have MS and will be in Disney World Sep 16-26th. (Me, hubby and 5 kids at Pop Century....say Hi if you see us!) This will be my first trip to Disney with MS although my last trip to FLorida was when I had my very first flare. The heat will be your enemy. I love my cooling vest and wouldn't go without it. I would also never go without a chair or ECV. You can feel OK one minute and absolutely not be able to walk another step the next minute.

My debate now is if I want to take my weekly MS meds (Avonex) while I am there or if I should skip.....I still get quite sick from them and who wants the be sick at Disney!.....anyway sorry to go off topic!

Have a great trip! Planning our vacation has kept me sane and happy for 6 months now through a lot of MS roller coaster. Enjoy every minute!

 

[Tosie]

My dh has MS (dx in 1997) and we've been to WDW almost every year since 2000. Our "normal" month to go is August - yes, it can be done!

At this point we travel without any assistive devices and no GAC. I think it's great that your dh is not opposed to using an ECV or wheelchair.

We aim for rope drop and we let dh set the pace. Although he usually has no problems, once in awhile he needs to get into some AC asap for a few minutes so we duck into a store or something until he cools down.

You also have the first aid/baby care stations if he needs to lie down for any reason.

We freeze wet bandannas and bring them to the park - they can be wet again throughout the day and have proven to be very handy. A cold bandanna on the back of the neck is wonderful!

Swimming helps a great deal for cooling down and for relaxing.

Staying hydrated is vital.

If your dh will be on an injectable you can request a sharps container at your resort at no charge.

Have a great trip!!! And big hugs to you - being the spouse of a person with MS comes with its own unique challenges and frustrations. Know that you are not alone!

 

[TJMunk]

One thing that can help is taking note of which attractions queue mainly in air-conditioning (Mickey's Philharmagic) vs. which queue mainly outside (Safari) and plan accordingly as it gets hotter as the day goes on. If you don't have time to get a cooling vest, a low tech solution that can help a lot is one of the spray bottles with a fan on it. If you can find one at Target or Walmart before you go it will save you a lot of money. Also, I would suggest carrying a few small and medium ziploc bags with you and a large mouth water bottle. You can always go into any restaurant location (quick service is easiest) and either ask the CM behind the counter if s/he can fill up your water bottle with ice, of if it's serve yourself, you can fill it up. Then transfer the ice to the ziplocs for a quick cool down.

-TJMunk

 

[Nanajo1]

I was dx'd 25 years ago. I had my first flare during a WDW trip. I thought I was just overtired! As you can see by my signature I've had many Disney trips since then. All the advice you received is great I'll add a few. Hydrration is very important. Keeping cool is too. I bring a small tote size umbrella to provide shade if I need it. Remmind your DH to put sun screen on his hands and knees if riding in a chair or ECV. Sometimes if you stop into an air condition shop it will be enough to revitaalize him. If he starts to feel tired stop then. Don't wait until he is completely spent or he may end up paying for it the next day. Twenty-five years later and I continue to have great trips. If your DH listens to his body he will too.
Have a great trip!