Disney for the insane and home bound - Epilogue

And I did say it was great to be home, but I would like to get some sleep. But not tonight, thanks MS, so here I am near one in the morning at my desk and outside my window Sandy is whipping the trees and dropping rain on my leaf covered back yard.  Or so I assume as it's dark outside.

Even with the wind wiggling trees and leaves tearing at the windshield, I still had a doctor's appointment today and made it down to Troy without hitting any media people standing around outdoors talking about how terrible it was to be standing around outdoors.  The doctor recommended physical therapy for the quasi-perpetual back pain I've had, and we reviewed all the recent blood work. Doing fine there, anyway.  Good to know the body (on its own) is working OK.  The brain, well.....

I stopped in Lansingburgh and took some pictures of the homes I'd lived in, which I'll talk about some other time.  Only mentioning it here as there is a group of Burghers on Facebook who reminisce about living in The Burgh over the last 50 years, and they are having a luncheon this Saturday which I may attend, depending on blah, blah, etc.

Okay, on to the Disney wrap up.  I will admit that this time I walked a little too much.  MSers out there might know the feeling in their legs (assuming you have feeling in your legs) of from your calves down to your toes...

that can only by me be described as "corn husks".  Your legs, all the bone and muscles, have been replaced by stiff cornstalks and it's your responsibility to maneuver without falling over.  So you tighten up every other muscle concerned with walking and try to get around, which causes problems elsewhere (see above lower back pain problems).

So the first thing is pacing yourself.  Even with cutting back as we did, I was still near tears as we got out of EPCOT (which stands for Every Person Comes Out Tired [not mine, but I like it]).  Next year, even slower.  Whether I'll be using a cane full time, or something else, or nothing, the pace we set this year was just too much.  It may be we can have a park day at the beginning and the end of the week, with down days in between.  Since EPCOT is the real focus, and the Wine and Food Festival being why we go when we go, there will be more of a concentration on that, maybe even to extent of staying at Boardwalk and make getting to the park less of a chore.

Second, and I referred to this in the last post (#50!) the jacuzzi, or at least some other form of relaxation has to be part of your time.  Yeah, this is a vacation, so act like it!  This is more difficult when you're shepherding kids to get the proper shot with Donald D and Goofy, I'm sure, but moms and dads, take time for yourself.  Getting down to Disney or any resort takes planning and if you're an MSer, it seems to take three times the energy to do half the fun.  Down days are needed, because if you don't do it, MS will do it for you.

If you're in a wheelchair or using a walker, here's what I've noticed.  Adults will step aside or try to not hinder your passing too much.  Children may not, as they dash about being children.  I was 8 once, and I dashed about too.  But its more about the crowds here.  The bipolar half of me absolutely hates crowds.  The MS part sees hoards all going to Casey's for a hot dog the same time I am, meaning I have to stand in line with them.  Standing means pain.  So what do I do? Go to baseball games, vacation resorts, NYC, etc., and son of a gun there are those damn  people again.  I'm exhausted just typing about it.  Can you get rid of the crowds?  Well, you could have the media go on for days and days about a storm that is going to hit wherever you're going, and maybe it'll cut down on the group.  But there's also acceptance of what is.  Referring to Disney World, go to the early openings.  Fast Pass rides to make sure you get what you'd like, especially the very popular Toy Story ride in Hollywood Studios.

Here's a good idea.  Tell them.  Disney, for all their flaws, does go out of their way to help their guests enjoy the resort.  They can make suggestions for transport, and better ways to get around the Park maze.  Play the MS card. You got handed this deal, you didn't ask for it.  Got the handicapped sticker?  You use that, right?  I do.  There are plenty of days when I park a bit of a ways away from where I'm going and hoof it, but just as many where I hone in on those slots like an 85 year old driving a El Dorado. It depends.

A reminder here that with PPMS, I'm missin' the remission.  All crappy, all the time.

But they tell me I look great.

OK, that's it for Disney and vacation time.  On to other things.  Thanks for reading (1600 + page views!) and I'll talk to you soon.  Bye Mickey!

Disney for the insane and the yes, I'm in a lot of pain, thanks! group. Final entry.

So we're sitting in the airport getting ready to fly home on this cloudy afternoon.  News was filled with Hurricane/Tropical Storm Sandy and how we will all die oh my god so keep watching this channel and see the commercials for politicians, okay?  Not sure why we're going home at all as we've heard in Orlando is that we'll be covered up to our pip picks in snow as the Greatest Storm since Creation gets ready to hit New York.

Since the last two days were DisneyPark oriented, I just lumped the days together so I can concentrate on reactions to the stresses, and fun, of the days.  As always, there are plenty of blogs and websites that talk about the parks and attractions, so check those for basic info.

Thursday we started with breakfast at the Rainforest Cafe outside Animal Kingdom.  This is an annual stop for us as the food is quite good, and the coffee gets you ready for what awaits you.

This is an entrance picture to the Cafe. The fish are fascinating to watch, and this time we watched a diver cleaning the inside of the tank.  I guess somebody has to.

So into the Kingdom.  The park is spacious so there would be a lot of walking involved.  I brought my portable walking stick (slim trim version of the regular one), but didn't really need it as the ground is fake dirt with leaves and foot prints impressed in it.  We decided we would not do any of the more hectic rides, such as Expedition Everest (I just closed my eyes anyway), Dinosaur, or Kali River Rapids (which I actually like) and settled for the mundane Kiliminjaro Safari...

and the bird show...

A cup of tea, a few shops and we were outta there. I'm glad that Kiliminjaro dropped the hokey "let's get the bad poachers" game and allowed us to see and admire the animals without getting the sledgehammer message pounded into us.  Yes, we understand the need to protect these animals, these fellow beings on the planet, but to the guy with a wife and three kids from Indiana, there's little he can do, except hope his kids get the message as well.  Respect for all life, because it is so precious.  If nothing else, maybe you'll smile at someone more.

So what I found was that anyone with MS, or any disease that affects the limbs, going to Disney World and staying on the property should really think about assuring their rooms have a jacuzzi.  What a neat relaxing feeling to sit in that warm water and let it circle around the throbbing or numb muscles, getting some small relief.  My wife and I compared legs.  Her legs are soft and pliable, mine are brick like.  So I laid there in the swirling tide until it was time to dress for dinner.  

Dinner at....

Rarely do I eat a lot of meat loaf, or a lot of meat, but meatloaf was just all over the place, and I could not resist.  Our lucky streak continued as a delay in dinner resulted in free drinks.  And home for the World Series.

Friday was the last full day and we compromised on a short visit to the Magic Kingdom before hitting EPCOT.  We have our favorites and I knew this would not take long, so I was not worried about walking.  It's 70 dollars a day to rent a scooter from Disney, so I'm glad it was not neccessary for me, but for a lot of others it seems, yes.

 

You know, you hear on the news about obesity and you can see when you walk around Disney, and any place the public gathers, how fat some folks are.  Now I'm overweight for a guy 5'6" by about 20+ pounds, but it used to be worse, and I should not  judge, and I'm not trying not to, however I have Multiple Sclerosis and have difficulty walking (you may have picked up on that) but I can still move, in fact I insist on it.  I know I have a serious medical problem and am trying to adjust to it.  That does not mean I won't have a Coca Cola on a hot day.  Food is not that big with me (the weight is from earlier days), so whatever Jackie and I (or just Jackie) decide upon is fine with me, and I limit my intake.  I do not miss out on things, though. Life is too short, and I do enjoy myself some, but life is also too short to screw around with it.  Why make things worse by adding unneeded pounds? I'm borderline on sugar, etc., and I'll need to look into that more, but we really need to be more aware that we're hurting ourselves.  And Disney and company DO NOT HELP BY CONSTANTLY PLACING HIGH SUGAR CONTENT DRINKS AND FOODS before us, especially children.  This is a place that is allegedly dedicated to families, and yet it continues to shove high priced sugar laced beverages at the public all the time.  And don't get me started on turkey legs. (Full disclosure - I have had one. All I needed.)  The Farmer's Market in Liberty Square at Magic Kingdom offers fresh fruits for snacks, as well as Doritos and energy drinks. Guess which they sell more of?

 

But on the fantasy front, there's nothing like the music from the Pirates of the Caribbean movies on the ride - and there has been some slight changes in music and characters since last year. 

 

 

 

 The above is just a favorite scene of mine from the ride, with the wind and rain lashing the ghost ship.  You can hear the music, right? Dead men tell no tales.

 

After that a quick stroll through Frontierland - not quite able to handle the rides there anymore, thank you, and the Haunted Mansion line was too long. We do the Mansion each time we're here, so no biggie to miss it.  The Hall of Presidents is always enjoyable and we wanted to see it as this might be the last "Obama speech" one.  Every in office President says the same thing about Liberty since Bill Clinton in 1993.  President Obama added the Presidential Oath (done correctly) in 2009.  Oddly, there is very little in the way of American History souvenirs in the souvenir shop, Heritage Hall.  It is mostly Halloween. Don't get it.

 

 

We did a quick run of the shops on Main Street and then left, but not before admiring the Castle.  I may have my criticisms of Disney, but there is nothing to touch the child in your heart than to take that turn on to Main Street and see the castle.

 

 

And I can not wait until I see it again.

 

OK, on to EPCOT.  A negotiation occured here about how we wanted to proceed, and whether I needed a break to head back to our rooms for a bit.  But I know this disease, and if I got back to that room and the comfy couches and books, I would not move.  So we compromised (we've been married 27 years for a reason) that we'd take a back way to EPCOT (through Disney's Boardwalk) and a short stroll and we entered EPCOT.

 

 

 

OK, I gotta put the iconic EPCOT Spaceship Earth in as it is Jackie's favorite ride, and we've done the ride for years and years. 

 

Now....





 

 

we entered near Great Britain, and noshed and drank our way around.  I freely admit to three desserts and two glasses of wine.  A fast walk, or as fast as I can manage,through Future World and we departed as the winds of Sandy picked up and rattled even the strongest walls.  The bus back, dinner at Wolfgang Puck's, and we packed to come home.  The jacuzzi called my name, but once I laid down on the bed, I was not moving.

 

Sandy knocked the plane around a bit on Saturday, but we arrived back no worse for wear.  And vacation ends.  It's now Sunday and we're in catch up on the laundry and go grocery shopping time. 

 

While on the plane, Jackie and I talked about what future Disney trips may entail.  More on that in the next post.  I hope you enjoyed this series as much as I did. Disney World means a lot to us, but, as Dorothy said, there's no place like home.







Disney for the insane and the slow moving Day 3

Welcome to Wednesday.  This will be very short.  In the morning, which for me started at 4:30 AM, because MS wanted it to, and I sat in the early morning peace on our balcony.  The only sounds were the burble of the swimming pool in the distance, the chirp of the crickets (the only bug allowed in Disney World, except bees but they're considered Cast Members for flower upkeep) and the grinding sound of trucks making things appear or disappear as needed.  Clouds rolled across the early morning sky, threatening and then delivering rain but stopping before park openings.  I dozed a bit more, and full morning came.

We had breakfast, shopped, and relaxed before lunch with friends and their enchanting three year old granddaughter.  A boat ride back to Downtown Disney, farewells, and watching the World Series.

I'm using a different browser this time, so let's see if its any better.  Maybe this picture will show:

Okay, that's a start.  We're hitting the parks tomorrow (Thursday).

Disney for the insane and disabled Day 2!

Good morning from  the happiest so forth and so on.  A decent night's sleep in a king size bed after watching the Giants thrash the Cardinals ( and the non-baseball fans out there would think that that is what would happen - the Giants being giants and the cardinals being about what six inches tall? Unless you had a whole lot of birds and did the whole Tippi Hedren thing).

I was able to get the picture from the welcome home center in place, but the bottom of yesterday's
Post did not come out as well as I'd hoped.  We'll try and do better today.

And, as the Joker said, here.. we..go.

We began the day with a nice breakfast on the porch, and then Jackie went to work out.  I thought about doors.

Disney for the insane and crippled Day 1!

Vacationing with the Disabled

Last Saturday was my wife's birthday and we celebrated by taking a three day cruise out of New York. I'm not sure if I should mention the name of the cruise line, but suffice it to say it has something to do with a Very Famous Mouse (VFM).  We have a place down at the Very Famous Mouse's establishment in Central Florida, and just enjoy the service we get.  When you've got MS and bipolar, the fact that the only decision you need to make is how much food you want to gorge yourself on (or could if you wanted to -we need to be as healthy as possible, and you can eat that way at VFM's) is not too bad.  All right, every few years, I have a turkey leg in the Magic Kingdom, OK?

Hey, I'm on vacation here.

On this particular trip, there was a large group of developmentally disabled folks and another group from Autism On The Seas which takes children with special needs and their families on cruises that include special staffing and activities. Commendations to both groups for taking their charges on a good time where they can be pampered, and see young people dressed up as cartoon characters, all friends of the VFM.

Except Donald.  And Daisy. And the security staff had a woeful night.  But more on that in a minute.

To keep ourselves on the BP/MS track, maybe its just me, but since I was diagnosed with both things, I seem to be able to see "one of us " in the everyday world.  I mean wheel chairs, walkers, and canes being used by folks our age and younger with that "certain walk" (it's the way we do the things we do), makes it easier to spot MS or one of its cousins.  But even the slower walk, stiff legs, and perpetual look of exhaustion and we can see us.  We just fall in tune with each other.  Now BP is different since it doesn't totally manifest itself externally if the person that has it is doing his or her best to control symptoms.  But you definitely know "one of us" when things aren't going well.

Like Saturday night on the ship.  And for this young man we saw walk by us midship, there were certainly some issues.  He was of Southeast Asian descent, was very skinny and wore older clothes and work boots.  He was carrying a toy baby in his arm when we first saw him, but we admitted that the ship had so many "cast members" he may have been a worker from below decks and he was just carrying the toy that some child had left behind.

Following dinner, the VFM's friends appear for pictures with the guests (and provide the guests the opportunity to pay big bucks for copies of said pictures).  We normally pay little attention (OK, we've already got our pictures) and went on to other things.  Except you could not ignore the man crying on the stairs.  His story was that he has very little money and spent most of it on the cruise so he could meet Donald Duck.  Since it was a three day trip, not everyone comes along, through it was nice to see Captain Hook and Smee along for the ride.   But no Donald. No Daisy.  Disappointing for most of us, especially we drugged up people.  But the man was crushed, and began wailing.  Since this might start a larger chorus of wailing to be supported by children, babies, and some of the more challenged guests, the big guys in the white "Love Boat" suits "escorted" the gentleman up the stairs and into a spare room, and was followed by the well coiffed VFM's staff. Calm was restored, but it was the gossip of the ship.

Now this is a VFM cruise, so you know there's a happy ending.  He was granted a special one hour meeting with Donald, and then Daisy.  Two hours with his favorites. Two hours.  I wonder if the man knows that Donald and Daisy do not talk.  How many pictures can you take?  And I am hoping Donald and Daisy's helpers were compensated accordingly.  We saw the gentleman leaving with his suitcase (shopping bag) and new friend Duffy the Bear.  The baby had been abandoned, apparently, which annoyed the social services worker still in me.  I mean, the baby can blink and wet, but all Duffy does is stare at you. All day. With those beady black eyes.

I have to the credit the folks on the VFM Cruise Lines for dealing with those of us who can't control their reactions, no matter what they or we try.  I still have my moments.  We've been going to That Place in Orlando that the VFM owns for over 25 years, and I swear, the first time we got our picture with him and even the most recent, there were tears in my eyes.  That's the Mouse.  My very hip nieces and nephew are rolling their eyes, I know.  Those 20 somethings don't get it.  But for us, for our age, that's the Mouse.  And when those 20 somethings have their kids and they want to go to a certain place in Orlando, and know a certain aunt and uncle have that place there.....they'll get it, and I know they'll be treated special as we were and those other folks were on the VFM cruise.

Turkey leg! In 4 months we're going to Orlando and it's turkey leg time!  I hope my wife doesn't read this part.