An MS'er goes back to Disney World 2014

An MSer goes to Disney World.

Things you learn:

1. No matter how slow you think you are moving WDW, there is always someone slower, and normally they are right in front of you, no matter where you are.  Sometimes, they are obese (and carrying more food), sometimes they are listening deeply to the words of another (who is slow also) or they are moving as pack,normally age 18 - 25 young males and females, and they are trolling everything on the Web (their index fingers going flick, flick, flick) until they have an OMG moment and stop to tell the rest of the pack the news.
2. People in rented scooters are, for the most part, trying to maneuver about the Parks as best they can. Others seem to get some thrill ramming into your back legs (because they see you as “slow”) and will not stop until you move aside.  This is why there is so much searching at the entrance to the Disney Parks.  We have to bring stuff, and the Parks want to make sure that we who have to bring stuff to Parks don’t bring Tasers to make the place the Happiest One on Earth by removing Loud Talkers, Whining/Screaming Children, and the Walk and Sudden Stoppers (see No. 1) from ruining other people’s days.
3. Speaking of scooters, my wife and I have decided that next year, barring a cure, of course, that I’ll have to start driving a scooter when we next visit WDW.  We stay at a Disney resort and I would use it there just to get around the area.  I can plop down in the Parks plenty of places, but the resorts? Nope. Get on the busses! Buy stuff! If you are sitting, and not eating what we have, you are wasting our time!
4. We will gladly take your picture at a lovely site, and you can download it for a low low price of about 20 bucks a pop, and you can also download it for four 
   weeks and then its gone.  They give you the best shot, and you are then stuck with a lousy shot on your own or pay the 20 bucks. Not always, but enough to add to a stress level. And you can only get these pictures for a month after the camera clicked by the Disney pros.
5. And all through this, my exhaustion and leg pain continues unabated. “Having a good time?” “Yep!” “Good. Relaxing and having fun?”  “I haven’t relaxed since 2008.”  
6. For me, “Its a small world” is a challenging ride.  All those eyes blinking, and the international dolls being placed in motion by sticks in their butts, and the damned song.  Just the stupid song.  Move to the next number down or “Small World” will be stuck in your head, too. You have been warned!
7. Please add to the list of People I Want To Taser as being anyone who walks around the beauty of the Parks, and there is great beauty, attached to a phone in their ear and move quickly (to you, sometimes a sloth moves quickly) and she does not see you because busy people talking on their cell look down at the ground as they walk, and are stunned to see you suddenly in front of them. It is your fault.  Then they move on with a sigh and a “What? Sorry. What was that? No, some old guy, looking at my butt.  Ha-ha.”
8. At the end of the Mickey’s very merry party (with free 8 ounce hot chocolate and two sugar cookies per guest) the parade of Disney characters went up Main Street, once around the rotary and then went back to cartoon oblivion behind a door near the giant toy train that circles the Magic Kingdom.  Walt liked trains.  There’s no real catch here except that the departure of the characters meant Disney, Inc. would like you, the customer who just paid a separate admission and received two cookies and 8 ounces of hot chocolate in return and told to move into a two foot wide area of the Main Street closest to the road. See, I fall over a bit, and being moved around by the “Helpers”, didn’t help matters.  Finally, someone was kind enough to reduce the size of their baby stroller from warehouse to SUV size and I could watch the cartoon spectacle, as long as I kept 80% of my sneaker behind the line. The human version of the Frozen group just smiled and waved.
9. This is usually where I can get really annoyed about disease, Congress, or something, but I’d like to leave Disney (and 2014) with this picture.  I turned around at the last minute and took this shot.  I am not sure that the future (or the MS version of it) may allow me many more trips down to Orlando or a lot of other.  So I may not see this again.  All that kept going through my mind was President Obama (no politics, please) at his 2nd inaugural when he was leaving the stand stopped and turned around, seeing the day, and the dignitaries, and the crowd cheering.  “I’ll never see this again,” he said.  Live each moment.  Be present here. As much as you can. And to requote the great Warren Zevon “Enjoy every sandwich”. 
   
   
   Happy Holidays!
   
   
   

Angels in the Swimming Pool

I'm sitting here with a home made ice pack on my left shoulder.  The pain and discomfort on my left side has grown over the last few weeks to the extent that what was an occassional tingling is now a constant, albeit not cringing, throb with tingling down the arm to my left hand, dancing all tingly like in my ring and middle fingers.  The ring finger is bopping to its own music even now.  Lucky I don't need it to type. 

So today is water therapy day.  I was hesitant to make the drive today as the Mets' R. A. Dickey was going for his 20th win and with the pain in my arm, etc. etc.  But I put on the big boy pants and went down the road to Seton Health anyway.  And, as usual, was glad I did.  The therapist had a few moments before splash in time and we talked about the arm pain.

"Maybe you can ice it," she said.  "Tone down the exercise.  See how it goes.  The shoulder could just be inflamed.  If you find its not changed by Tuesday (our next session), then maybe its inflammation not from exercise, but is being pushed by MS."

Maybe. Always maybe with this thing.

So into the routine, and into the water, bobbing around like an apple in a Halloween tub, in five feet of warm water.  I'm the youngest guy in the pool, sometimes the only guy, some times just the youngest, and I stay in my little corner moving arms and legs, using water weights lighter than I've used before.  Damn, this hurts.  Okay, not Spanish inquisition pain, but that's not my MS. I have the nibbled into a wheelchair by ducks version.  Longer breaks between stints of work.  Later, the therapist turns on water jets and the soothing spray numbs my back and arm throbbing for ten minutes or so.  I gab with the ladies on good places for dinner.

The hour passes and its time to head out.  Just before I leave the pool, a beautiful young lady of about ten years of age, and her mom, stepped into the water therapy room.  The girl's body was skin and bones.  She had the look of a child who has seen perilous times, but has come through it all with an amazing smile.

And a limp.  But take her from land and place her in the water, and she floated with wide eyes and a radiant grin.

"This is like walking on the moon!" she said as she moved serenely from one edge of the pool to the other.  Her mom smiled wanly and excused herself.  Her child was in safe hands.

I hope she does walk on the moon.

So, another week of doctor's visits and changes in prescriptions.  We doubled the Nuvigil to 200 Mgs and MY AREN'T WE UP AND PEPPY!  Time to do the laundry! Again! Done? Go next door and get the neighbors!  Do theirs! Finished that novel? Great, write the next!  Use exclamation points!

Quoting my psychiatrist:

"You've got MS and are bipolar.  There's nothing you can do about the MS,

so looking at your bipolar status, you can be depressed or manic.  Personally,

I recommend manic.  Within reason."

 

 

I'm reasoning as manically as I can.  But then I think of that sweet child moving about the pool, feeling weightless and free, if for only a short time in her busy life. Tis well.

 

 

All of us in that pool are damaged, looking to hold on to the side or feel free to float and dance.  Like angels dancing in the morning sun.  I see them there in that water every Tuesday and Thursday, whether helping or being helped.  There is no hope in my disease. But there is amazing peace. Like walking on the moon.

Pains! My body's got me chock full of pains!

And it ain't the kind that you can see, woh.  So I borrow from the Beatles (OK, Carole King and Gerry Goffin wrote it) from Please Please Me 1963.  It's one of those "I'm not going to sleep tonight" nights so I might as well talk to you.  Busy Saturday as I did lawn work, which means mow the half the area of the yard where grass still exists, and then tomorrow go over the weeds, plants, and other things that have taken over the other half in the heat and drought. And dirt. Just plan dirt and sand.  I've tried to help out by building a small temple.  It takes a little time.

You may see both a Christian and Buddhist motif here.

I just sort of keep adding to it, and the more stones there are, the less mowing there is, which will eventually become a real boon as I'm slowing down enough that sometime soon, not for a few years yet, but its coming.. the day when I won't be able to work in the yard, even something as quietly enjoyable as weeding.  That's my prayer time.  I can move prayer time to anytime, I guess, but there's just something about being surrounded by plants and a gentle breeze is flitting by on a coolish summer morning that just brings one close to the [fill in your version, if any, here] Spirit.

But back to pain, which Buddha warned about (everyone suffers).  This coming Wednesday my doctor is going to work on the lower part of my back to assure that it might just be pulled muscles from overuse, and not the lesions spreading their army.  I've written about the invading pain army before, and it appears that tonight, as I was lying in bed, a new army arrived from Pain Headquarters and took up the right flank.  This new army then attacked.....

See where this dude has his right hand? Right through there and down the right leg, tingle all the way.  (Thank you, Stockphoto).  No matter how I moved, the army adjusted its plan and moved with me.  After two hours of trying to doze off in any form, here I am at 2:20 AM typing this.  The new army just jostled the other army awake and those guys had been pretty quiet since the afternoon. I admit I probably overdid it when, following ninety minutes of yard work, I headed down to Albany to help my niece move to her new apartment.  This meant lifting tables, chairs and packing them into my SUV along with boxes of books (Hey, is that my copy of Mein Kampf?), non used laptops and Macs, and golf clubs(?) some of which then needed to be stored at our house.  Lots of picking up and moving things from here to over there.

The table was my wife's grandmother's, and it was touching to see that Grammie had written her name on a piece of masking tape and stuck it on the bottom of one of the table leafs ("just in case someone tries to take it before they find my body, you know.").  No worries, Gram.  We've got it right here.

Grammie is Margaret Rider, and she's the lady on the left in this shot from 1998.  The other lady is Jackie's mom and we were attempting to have a happy holiday season right after Jackie's Dad died.  Everyone put up a good front, but the pain on each face is true.  Internal or external pain makes no never mind, it is suffering that we must face and deal with.

Personally, right now I'd sell my William Shatner music collection for some morphine so I could get some freakin' shuteye.

Thank you, Mr. T

One of my secret pleasures is the movie Rocky III.  Right in the middle of the Rocky series, it has Stallone in his greatest roll facing his greatest nemesis, Clubber Lang, played by the one, the only Mr. T:

This Rocky movie continues the pattern of killing off people from the first movie to keep the Champ motivated to pummel his opponents.  Clubber, not in the first two movies, does his part by killing off Apollo Creed (the Ali of this series) and then hitting on Mrs. Rocky (the amazing Talia Shire) before "clubbing" Rocky into submission and winning the championship.

And what was Clubber's prediction?  Pretty much what my doctor said:

Pain. It started down at the bottom of my spine and is moving like an insurgent army up my back and out into the nerve endings and muscles of the sacrum area (lower back).

 Terrible? No, fortunately.  But its like this.  Take the thumb and index finger of one hand and pinch some skin on your opposite arm.  Now keep your finger and thumb doing that all day long. Every day.  Not hard, don't squeeze (unless you're into that) but just imagine that annoyance every minute of your waking life.  You can't walk for more than ten minutes or do much of any activity before it comes on and stays on, fades only when you're asleep.

If it allows you to sleep.  See, the pain army has not only invaded, but its also infiltrating where it can, sending out its agents to new places, like my arms.  And as part of its program, the pain army doesn't just use its favorite tool, but also numbness and that general uncomfortable feeling, like when your foot falls asleep after the tingly feeling goes away.  There is no place to put my arms that they don't feel that way, making sleep an impossibility.  I am grateful for Hulu on those nights.

Again I know there are many people who have more severe pain problems than I can probably imagine.  My heart goes out to all of you.  But I also know that MS can do what it wants when it wants, especially in Primary Progressive MS where we really don't have much in the way of drugs aside from aspirin.  My primary doctor and I are going to look at some osteopathic possibilities.  Not that this is the be all and end all.  If the lesions in my brain are causing this, then that's that.  But maybe, maybe we can make it a little better.  In the world of fog that most MSers live in, a chance to focus outside of ourselves for a few more moments each day benefits everyone.

I'm not sure who the general of the army is that's invading my body, but I've got an idea its a very very teeny tiny version of ....

There's more pain to come!

Thanks for reading.  And thank you Mr. T. I pity the fool with MS!