Monday, October 29, 2012

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  Your legs, all the bone and muscles, have been replaced by stiff cornstalks and it's your responsibility to maneuver without falling over.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




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