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  Your legs, all the bone and muscles, have been replaced by stiff cornstalks and it's your responsibility to maneuver without falling over.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!

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.