Disney with Multiple Sclerosis

[AndrewJackson]

I have recently been diagnosed with Multiple Sclerosis, and have been on Avonex for about 8 months. I have been having some "issues" the past several years, with the most severe causing me to be hospitalized back in December of 2007. All in all, it is good to know what is wrong with me.

To get to the point, because of my MS, I am concerned about my stamina at the parks. We typically take it easy on our WDW vacations. We are planning on going to MK on Sunday, March 22nd first thing. We have reservations for Crystal Palace at 8:05 AM. We plan on spending some time at MK, then head over to Epcot, only to return at MK for the 11:00-2:00 AM EMH. I also plan on resting for 3-4 hours prior to returning to MK for the EMH.

My wife and I have a 15 yr old, 13 yr old, and 4 yr old. I know the 15 and 13 yr old very much want to return to MK for EMH. I don't want to disappoint them. I have considered renting a wheelchair for the theme parks, but I don't want to embarrass them as well.

I have nearly made a complete recovery from my bout back in December of 2007. The only residual effect is the lack of feeling in the bottom of my feat. They can hurt pretty bad at the end of a day. I also experience some fatigue, but not always.

So... If anyone has any suggestions on how to deal with this, I would certainly appreciate it.

[ElenitaB]

First, would you consider an ECV instead of a wheelchair? At this point with my fatigue and stamina issues from ongoing chemo, I can not do the parks without it. I know that I feel better when I know that I'm not causing anyone extra work.

Second, an afternoon break is your best friend. It will also be the best friend for your entire family if the 4 yr old accompanies you. The teens can always hang in the parks with your DW, while you and the 4 yr old have some special time. Recharging your batteries will be very important for maintaining your stamina for the entire evening (and not just EMH), and will make for a less cranky 4 yr old as well (wish the fix was as easy for teens ).

Last but not least, I noted that you're staying at VWL. You can have your reservation to request a room near the elevators. As you know some of those halls are mighty long!

I don't have any words of wisdom re: the neuropathy. Mine tends to be no worth or no better than at WDW provided I don't walk too much.

Ask your doc or read up about sun sensitivity vis a vis every drug you are taking. I know that several of mine do have special precautions re: limiting expsoure to direct sunlight and using very good sunscreen.

[sisterdisco]

Hi.
I am a MS certified nurse. One thing that I would be very careful about is "overdoing it' one day. If you plan to burn the candle at both ends by doing early am and nigthtime EMH, my concern would be that you might be wiped out for the next 2 days. Also, consider what day of the week you take your Avonex and if you get any side effects afterward....if that coincides w/ your planned long day, then I would expect that you would feel worse.

If you don't already have one, consider getting a "cooling vest". There are a few types, but I like the kind that looks like a fishing vest that you put ice packs in. This helps people who have increased fatigue in the heat.

I would strongly recommend renting a ECV or wheelchair to conserve your energy.

Setting the pace and conserving energy can go a long way in making your vacation fantastic.

[Marilyn Michetti]

I was diagnosed with M.S. in 1973, and now use an ECV most of the time outside the house. We do WDW in Dec. for two reasons: we don't like the heat with humidity, and: we love Christmas.

We start the day early, and end early. It's just the two of us, so we have no one to disappoint but each other, and DH is a Sr. citizen too, so he doesn't mind.

As far as embarassing your family, M.S. patients ALWAYS have that fear. I have moments when a word will come out backwards, or I can't think of what a plate is called. Before I lost so much mobility, people would think I was drunk. I spill things out of my mouth - eating with strangers is awkward. I could go on, but you have your own list.

Our challenge is what it is ! Ya know? Your family will have an easier time if they don't have to guess. SAY, "I need to stop for awhile", or "Go ahead, and I'll meet you later". Don't be afraid of the ECV, which is MUCH easier than letting someone push you. (I bring mine with me on the plane - it's way cheaper than renting at the parks). Having your own ECV has three advantages, price being one, but think of how long a walk it is in airports, and to and from resorts to the gate. Also, you will know your ride and become proficient at getting on and off busses, and attractions. Those "trucks" in the park look huge.

Listen to your body, and do what it tells you to do. Your family will be O.K. M.S. is part of their life too.

Lastly, have fun. Worry brings on stress, and stress brings on symptoms and that's a real BUMMER.

[steamboat willy]

I have had MS for 16+ years. I was able to do WDW until about 4 years ago. I was sure I could still do the walking because I only used a cane at that time. Boy was that a mistake. I made it to the bridge in Adventureland & could go no farther. Keep in mind that if you walk somewhere you have to walk back as well. My DH went & rented a wheelchair for me. That was my first experience in a chair & I to felt embarressed, but I got over that real quick. It was actually easier for me & my DH for him to push me in the chair. This allowed both of us to see more of WDW & he didn't have to stop & wait on me to rest.
I actually suggest that you use a wheelchair, have someone to push you & don't worry about what anyone else thinks! No one else knows you, so why should it matter.I now use one in the parks all the time. It's better for me and my DH. The cast members treat you so well & will assist you in any way. Naps are a good idea in the hot afternoon. This allows you to rest and other family members can go to the pool & have fun.Then you can head back to the parks for the rest of the evening.
Please consider how you can help the rest of your family to enjoy their trip with you & please don't worry about embarressment. That will only hinder you & the fun you could have.
Keep a positive outlook & have a wonderful time.

[jessicazmom]

I was dx 3 years ago. My youngest is starting kindergarten in the fall and to celebrate we are taking him to Disney. Not many people are encouraging me, saying you'll have fun. Instead, I'm hearing more questions. "You're going in the end of July? It will be so hot!" I'll be honest, it's discouraging. I really think I can do this. My last MRI in March showed my MS has not progressed. I can walk and get around without needing assistance. I just go at a slower pace. On this thread, someone mentioned a cooling vest. Is that something I can get at a medical supply store or do I need to go through my dr.? Thanks!

[g8rgirl29]

On this thread, someone mentioned a cooling vest. Is that something I can get at a medical supply store or do I need to go through my dr.? Thanks!

I just did a google search for cooling vest for multiple sclerosis and several sites came up, one even had some that looked like a womens sleeveless blouse you would just wear a tank under and it came in several prints.

[crazypoohbear]

Let me come at you from a different perspective.
I am the "child" of a mother with MS.
We went to disney with mom in 1994. I was pregnant with my second son. My oldest was 4 and 1/2. So, it was my DH, DS, Dmom, and DSis.
We went in March, the week of St. Patricks day, Holy day of obliteration in my family
We rented a wheelchair because even though at home mom only used a cane, we knew that there would be lots of walking and in the heat and humidity she would get "spagetti legs"
When going through the MK we cut through the stores on the left to keep her cool and in the shade. We did things at her pace but in the wheel chair her pace was pretty good.
My Ds loved it because having a "handy bammie" meant we could go to the front of some lines.
She had a terrific time with my son and my son still talks about different things he did with "bammie"
Cut to 15 years later, mom is in a nursing home with dementia, she can't remember the trips she took with us but we remember them, including bringing the wheelchair to
the beaches in Maine, New Hampshire, Ma.
New York, (the Mean streets of the city!)
We went to Newport and toured the mansions
Wandering boston, we went everywhere we could with my mom and cherish the memories. we wouldn't have done anything differently and she did not embarress us or slow us down. We loved having her with us and would give anything to be able to take another trip with her.
Please go, stay cool, use the wheel chair, get the bus 1st , get to the front of the parades, the shows etc. Your kids will NOT think you are a burden or someone to be ashamed of, they love you and will love the "perks" of your illness, if you will.
Earlier I referred to my mom as "handy bammie"
that's what my kids call her bammie" because she use to let them bang on the table, drums pots and pans whatever. Bam bam!!
She is also "handy" because while she may be handicapped, she made sure to "enjoy" the perks of being handicapped and making the most of her situation. hench Handi bammie!!
Please, don't think that you are a burden or anything other than the loving parent that your children have always enjoyed.
Oh, and make sure you stay cool by having a dole whip and think of my mom while you enjoy it

[LibertyTreeGal]

Definitely ECV it and if the kids would rather stay home and not be embarassed then get them a babysitter otherwise, I really doubt they will mind.

[jomontsjuice]

I was diagnosed with MS around November 27, 2007. We had a disneyland trip planned for Dec. 1. It was a bad month before I found out, in bed most of the time, couldn't even fold laundry I was so weak. Anyway enough with the horror story. My husband was worried about still going. I was still on prednisone ( a high dose) and I was still very weak. My kids 6,5,and 2 were so excited to go, I wasn't going to let anything stop me from going to the happiest place on earth with my family. So we went. It was the best treatment I could have at the time, it helped me deal with the anxiety and fear that comes with that diagnoses. We rented a wheelchair and I didn't give a worry to what people might think of me. Like some with MS, on the outside I look healthy, but so far from the truth of what demon lies inside to torment you. Yeah I got some looks when I was being pushed around and then I would park the wheelchair and walk on the rides, or give my kids a rest and ride when I felt good. It doesn't matter, we had a great family vacation. I have been to disnyland two more times since. We are planning on flying from Utah to Disneyworld in Nov. or Dec. 2010.

Tips: Go in the coolest part of the year. Drink water. Bring a bandana and wet it down with cold water and sometimes I even put ice in it before I put it on my head. It helps keep me cool in the sun and heat. I'ts good for getting wet and wringing on the kids when they are hot too. Get up early, and go back to the hotel early, the kids will go to bed at a regular time and you can get your rest too. My husband will go with someone else in the park after we are back at the hotel, so he doesn't miss out on his fun on the account of me. Save your energy, when others are on a ride you can sit in the shade and rest. Sit down and eat a good meal, take your time, and just enjoy the vacation.

Have a great vacation !

[SurferStitch]

My DH was diagnosed with MS on October 26, 2008...the day after we returned home from an amazing 2 week trip to WDW. It all started with tingling in his feet a few days before the end of our trip, and by the 26th, we was numb from the chest down (his lesion was on his spine at that level). He then had a slight relapse of that exacerbation around Thanksgiving after an almost 100% recovery. That affected his left leg badly, causing weakness and severe limping for a couple weeks.

Today he still has minor tingling/numbness in his left foot, and just today is having issues with his left leg (feels numb and a little cold to him, but isn't really cold). It's probably due to stress (lots of work to do designing websites), and not enough sleep. That tends to make him worse. I literally have to drag him off the computer and make him relax.

He was concerned about motoring around WDW, but we were never park commandos....we prefer to park hop, and now that PI is no more, we like to hang around the resort at night.

We were going to stay at Pop this December, but DH wants to stay on the monorail to make it easier most of the time to head back midday and relax. I think it's a great idea. That's why he surprised me with our stay at the Poly. We are also going during cooler weather, even though he doesn't have any issues with heat (thank goodness). And hey, if he needs a wheelchair while we're there, there's no reason AT ALL to be embarrassed. I doubt he will need one, though.

He takes Betaseron injections every other day, and has no side effects at all. He also just started Amantadine for fatigue, which seems to be working, but it's only been a couple weeks. He used to work out regularly, but his work is really keeping him busy at night. Hopefully he'll get some websites finished and can get back to the gym religiously (like me).

So, in review (since I'm so long-winded):

1. Rest when you need it. Don't push yourself.
2. Stay as cool as possible.
3. Rest when you need it.
4. Don't be embarrassed if you need an ECV or wheelchair.
5.. Rest when you need it.