Any other Diser's with MS?

[kdkbrebel]

Just wondering if there were others out there. I was diagnosed in May of 2011. I have had 2 flares since the diagnosis and am currently on Gilynea, was originally put on Avenox.

Planning a trip to the world for July (yes I know hot and crowded) only time we are able to go. My biggest issues from the MS so far is I have weakness in my left leg and foot drop so I have an AFO. And I have pretty bad balance and coordination issues at times. Sometimes it is real bad some times I can't even tell.

Any tips for traveling the world?

 

[ls15]

Just wondering if there were others out there. I was diagnosed in May of 2011. I have had 2 flares since the diagnosis and am currently on Gilynea, was originally put on Avenox.

Planning a trip to the world for July (yes I know hot and crowded) only time we are able to go. My biggest issues from the MS so far is I have weakness in my left leg and foot drop so I have an AFO. And I have pretty bad balance and coordination issues at times. Sometimes it is real bad some times I can't even tell.

Any tips for traveling the world?

Hello kdkbrebel!

My mom has MS and her and I go together. Hopefully you are doing well.

My mom has progressive MS and is in a wheelchair, so things are obviously a little different, but I can offer you some tips based on our experience.

- get a GAC (guest assistance card). Explain to them you have MS and they can put a stamp on it that, if there are attractions and rides that will allow you to have a shady location instead of in the hot sun while waiting in line, you can sit there.

- if you are having a day where your balance, weakness, footdrop, et cetera (combined, of course, with the heat) are worse, consider getting a wheelchair. I would recommend this mostly for Animal Kingdom - it is hilly and a little uneven to walk on, and isn't the most pleasant.

- There aren't TONS of benches to just sit and relax on, so if you see a place in the shade and need to take a break, then definitely do so, because you might not find another option for awhile.

- I'm not sure if you use a cane, but even if you have one around to lean on/et cetera, that might be helpful if the foot drop is a little worse cause of the heat.

- Because my mom is in a wheelchair, we used the wheelchair entrance for 90% of the rides/attractions. It may be beneficial to you to use that entrance if it's a really hot day - we found every single cast member, literally, was completely understanding.

- My mom can transfer from the chair to the rides, and there were a few rides that were really hard for her to get in and out of, so you might need help standing up and down, getting your weaker leg in and out of the ride, and so on.

If you have any other questions let me know. We're going again in a few weeks so I can certainly look into some things for you, as well.

 

[Strawberry's mom&dad]

I have RRMS. diagnosed 2001.
What I have learned:
Walk as much as you can before you go to get your stamina up. I get up to 3 miles per day before we go. inbetween trips I walk 1-2 miles per day to keep in Disney shape
Take a break every afternoon. I find a dip in the pool helps with heat tolerance.
While in the parks walk through all the air conditioned stores.
Wear a hat with a brim.
If need be rent a scooter to make your trip more enjoyable.
Have fun

 

[Nanajo1]

I was diagnosed in 1986. I've been to WDW over 20 times. My advice is to stay hydrated and cool. Listen to your body. If it is telling you to slow down then slow down. There are some great shows that are perfect for cooling down and taking a rest. Try to schedule these breaks during the 10-2 time when it is the hottest. Have a great trip.

 

[Sunnywho]

RR MS diagnosed 2006. It's why we now take 10 day vacations instead of shorter ones. It lets me take it slow and know that if we have to leave the parks earlier than I want to on one day, we'll be back another day. The GAC is very helpful. I did not know about the first aid stations before but they have cots in the air conditioning where you can lie down if your MS acts up. This past August, waiting for buses in the sun and getting worse while I waited (heat sensitivity) and then having a full bus pull up = torture!

Disney is still as disney as ever, it's still a magical trip even if it's more complicated with a health condition to deal with, and they are great at dealing with disabilities. We also always got a free refrigerator at the values to refrigerate my copaxone but now maybe the values have refrigerators? Not sure.

Sympathies on the diagnosis.