MSer with suggestions and questions

[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.....

 

[Nanajo1]

Why do we let uninformed and/ or ignorant people have any power over us. We do not owe anyone an explanation. You should use any and all devices available to you that will enhance your trip. You said you won't let MS control you so why give any control to people you don't know and will probably never see again. I try to ignore the rude people or just smile sweetly at them if I have overhear them making stupid remarks. I prefer the independence an ECV gives me. I also don't look very sick( I once read about an MS support group named "But you look so good") but it is no one's business why I need mobility aids. Please use what is best for you, your family deserves to have a good time and you do too.

 

[SueM in MN]

People have made comments that my DD doesn't look like she needs a wheelchair either. I don't know how they decide who does or doesn't since she has very thin arms and legs because of her lack of muscle mass and also has uncontrollable (athetoid) movements of her arms and legs. She has her own wheelchair with a special seating system and straps over her feet to try to keep her feet on the footrests. As long as you are breathing, there are people who will think you don't need a wheelchair or ecv. Like Nanajo said, don't let them control you. Anyone who makews comments about things like that is ignorant or cruel (or both).
A wheelchair or ecv is a freedom device for someone who needs one. It can allow you to go and do things that you couldn't otherwise do and conserve your energy for more important things than walking.
For timing, we have been to WDW in April and it can be a very good time to go. The weather is usually nice, not too hot. How busy it is depends on when Easter falls. The closer you get to Easter, the busier it is. Once you get into the hot weather in late May - early September, it is very hot and humid. DD just wilts. I don't tolerate humidity well myself and would suggest you avoid the warm months. We have never been there over Thanksgiving, but I have heard the crowds right around then are bad. The few weeks before and after are OK.

 

[mary lynn]

Hello....

We are planning a vacation the second week in Feb. 02 to Disney with our son and family of which our son age 30 is disabled. Is there anything we should be prepared for? It will not be like traveling in the summer, so hopefully it will not be as bad, and I have seen how people do not consider one in a wheelchair. Not only is our son disabled and wheelchair bound most of the time, he also has very poor vision. (Multiple Sclerosis) He has trouble stopping the wheelchair in time when someone walks in front of him assuming he can stop in a moments time!

Any suggestions for you trip will be very helpful. This is all new to us. Our son became blind, quadripligic, and on a ventilator over a six week period of time. No warnning...never sick prior to this so our lives have changed. He was off work for a year and in the hospital for nine months. He wants to take his 5 year old to Disney because MS is progressive and with the severe attack he had he knows that things can change in a moment. I should say that Jeff is doing well now, breaths on his own, vision returned 75% but has to be in a wheelchair with walker used for short steps. Our web site is www.allaboutms.com if any MS's would like to read more ...

Thanks for all your help!

mary lynn

 

[SueM in MN]

I can't help you with the MS questions (except what I know as a nurse), but our family has been to WDW many times with my 16 yr old DD who has cerebral palsy and uses a wheelchair all the time. We went one year over Valentines' Day and found the crowds were non-existant and the weather was cool. My DD wore shorts most days, but DD and I wore jeans every day. Since there are not as many people, it will be easier for him to navigate.
You can pick up a Guidebook for Guests with Disabilities for each park at Guest Services. There are a couple of useful things in the guidebooks; they give an approximate time for each ride/attraction and give you an idea of whether it is a gentle boat ride or a turbulent thrill ride. They don't have a lot of information that will help you decide how to board each ride or even whether he will be able to get on. One of the other really useful things they tell is where to find the companion rest rooms. They have these in each park and they are very nice for anyone who needs assistance in the bathroom. They are a room about 10 by 10 with a toilet with a grab bar, usually also a urinal and a sink.
If he needs to take a rest, he can go to First Aid in any of the parks. They have separate cubicles with a cot. They are dimly lit and quiet. They are a nice option instead of going all the way back to your room, especially if you plan to return to the park later.
If you have any specific questions, go ahead and post them and we will try to get answers for you.

 

[mary lynn]

Thanks so much for your reply. You have been very helpful and I have that book that spoke
of coming in the mail. I will read it before we go...

May you have good day filled with many blessings...

Mary Lynn

 

[Robin]

I too have MS...and am worried about my energy levels during our WDW vacation. I am pretty active at home...I have good days/bad days. At times my legs spasm and I am forced back in to my chair...spasms can last minutes to hours to days. I look very healthy...but tire very fast, My SO calls me his firecracker (i start off real strong in the mornings but get dim as the day goes one) We are going Dec 1- Dec 8...with the parks closing early I am hoping the attendance will be light. I have a 3 yo DD and dont want her to see me in my chair the whole time. We are staying at the CSR and have requested a disabled friendly room...but in reading about the resort I'm afraid it might be too spread out?? Any suggestions on what resort would be best??

 

[mary lynn]

This will be our third time down there but FIRST TIME with our son who has MS.
It will be a trying time. I am praying daily now for that trip. We are going to stay at the All Movie in Disney or at the Radison Parkway a mile from Disney. We take a shuttle to Disney and back. I have stayed at the Radison Parkway. Very clean and nice. Not geared as much to kids but still OK. NOt sure I want to have Disney Bed Spreads and such! We are planning on going down to the beach two hours away also and renting a wheelchair that works well in the sand. It has invlatable wheels... I have read and read and read and still reading. So, I am learning just like you. Sorry I could not help you more.

The best to you. YOu go before me so if you could be so kind as to e-mail me when you get back and keep me posted I would be forever greatful.

I would also like to hear your story about MS if you feel like sharing.

My e-mail is
msimmons@neo.rr.com
my web site with our story is
www.allaboutms.com

 

[teri]

This month's issue of Inside MS has a nice article about travel... if you didn't get it, you can probably call the local chapter of the MS Society and see if they can get you a copy.

The keys are to rest, to pace yourself, to stay cool, and not to try to do too much. All the moderate resorts (including CSR) are large and spread out, so be prepared for those hidden energy sinks, like getting from point A to point B, that might take away from your park-time energy. Whatever you can do to make the travel times easiest, make it happen.

When we go to WDW, we tend to want to DO so much, since there really is a lot to do there, and we get disappointed if we can't do all we want. But if you go there with the intention to relax, enjoy all the abundance that surrounds you without feeling that you have to consume it all, it makes for a much more pleasant visit. And if there are people in your party who are high energy and want to to commando/turbo touring, plan for ways to split up your party so they can go at their pace. Rent the 2-way radios so you can coordinate places to meet, keep in touch.

Also, don't forget that caregivers need a vacation, too. Services like the Fairy Godmothers are available to care for disabled family members, which can give caregivers a chance for respite. Also, parents who have chronic illnesses can use these services to give themselves some unencumbered time to go at their pace without the kids in tow.

 

[SueM in MN]

If you are staying at one of the WDW resorts, you can request to be close to the food court (if they have one) for medical reasons. That will almost always also put you close to one of the bus stops. You can also get help in aranging for your room thru WDW Resort Special Reservations at (407) 939-7807 (voice) or (407) 939-7670 (TTY). Transportation will not be a problem. Almost all of the WDW buses are equipted to carry wheelchairs and ecvs.

If you are staying off site and you have a wheelchair to transport, be very careful to get specific information about whether they have any shuttles that accomidate wheelchairs/ecvs, how often they come, etc. Some posters have thought there would be no problems and then found out that they basically had to arrange their own transportation.

And for Robin, pixie dust to you. I bet it won't matter to your 3 yo whether you are using a wheelchair or not. What will matter is that you are there. Do what you need to conserve your energy for the important work of watching your 3 yo have a great time.

 

[meg&alliesmom]

I just wanted to say thank you!!! You guys are awesome and have a lot of important info to share. When we went back in 98' we stayed at the All Star Sports and we did happen to stay at the Surfs Up section which was close to the pool, food court and busses. I loved the location and although I did have MS then, I didn't know it. MS is such a tough disease because so many of us "look so healthy". I am so glad that I do look healthy and that it is not apparent that I may not always be 100%. But on those days that I really feel like the cat dragged me in, I don't feel very healthy. That has to be the most common thing that people say to me. A postitive attitute is so important. I give it my all to keep that my most important quality. My two girls, ages 10 & 12 and my husband have had to realize that I just can't do all that I once could. I have always loved to go and I loved to be busy. So when I am down for the count, I really hate it. Unfortunately, today could be a great day and I could wake up tomorrow with a major exacerbation which can consist of anything from a numb leg and weak limbs, to losing the hearing in my left ear, vertigo and double vision (which is what is finally starting to pass since the end of June!!). So traveling is tough when it is all so unknown. I count my blessings every day that these attacks pass and I look forward to that day from the very first sign of the attack. I am very lucky because I know it could be so much worse. I have a wonderful family that have been very supportive. This is probably my most used website and they laugh at me because as tired as I may be and as lousy as I sometimes feel, the dream of going back to WDW is always on my mind. We will go again, in time. Hugs, Lori

 

[teri]

Lori, never underestimate the therapeutic benefits of vacation planning. Having something to look forward to makes those tough days a little easier to bear. {{{hugs}}}

 

[Nanajo1]

Lori,
Last March I had a major exascerbation, my most troubling ever. I could not walk at all and I had always been able to at least get around using "one cane and a wall". We had a trip planned just DH and me. We thought about canceling but with snow storms up here in the northeast I knew I would be housebound and where else could I go to be in a accessible friendly place. So we went, I had rented an ECV and although it wasn't the greatest trip ever, we had a good time. Of course I checked with my MD, he was supportive. We relaxed, took in a lot of the more low key attractions and really enjoyed it. To me being at WDW is being at my other home and I go there to relax, rejuvenate and now to recover.

 

[teri]

{{{hugs}}} Nanajo.
Lori, I just reread your original post... you should consider renting an ECV rather than using a wheelchair. It will conserve energy and give you more independence.