Tuesday, July 31, 2012

And now and then a surprise....

In previous blogs I've spoken of my family and how they are kind of on the edges of my life.  Not totally their fault, maybe mostly mine, but my early bipolar ways didn't help.

I bring this up because of two things:

1. Various members of my extended (work) and personal family have been all over my radar over the past week, with more to come, and....
2. My search for a new psychiatrist returned me to bipolar time with questions about who I hurt through my weird reactions to what was going on around me.  It was a trip back to the late 90s and the early 21st century.

In the psychiatrist search I contacted a doctor that was recommended to me by my psychologist (my visit with her on 7/30 went well) and the routine at the possible new doctor's office was that you filled out a form online and then would be contacted by staff at the office to set up appointments and all the usual paperwork would start.  Fine and dandy.

The questions were enough to get anyone thinking.  After you put in your demographics, the questions were like this (I paraphrased the questions so that I don't get a legal action from anyone):

A. Have you ever had so much energy that you could stay up all night, not sleep and never miss it?
B. Have your actions while you were in a manic phase ever caused pain to others, either physically or verbally?
C. Did you ever think the world revolved around you?

Yes, yes, and yes.  It got me thinking about arguments in my family and how I also damaged relations with friends at work by being a total jerk. This is pre-drugs, pre-psychologist, my bipolar  mother still very much alive and demanding attnetion, because she should have answered the three questions "yes", but at the time we would have said, "Well this whole thing is stupid and I'm gone." 

And yet some of those people hung around.  Some moved on, and I wish them well.  But when I'm screaming and leaping over furniture (wish there had been an Olympic try out for that - I would have won because the world revolved around me) it can make others ponder (I was certain they were just in awe of me).

So in 2004 my two closest friends at work leave to pursue other opportunities - good for them (actually how dare they leave me!).  Now I was stuck in a job I did not like, the only people I had any interest in were gone, and my chances of moving up in the agency were slim.  I went from manic right down into depression, a failed maybe suicide attempt at Christmas, and then I finally got help.

When I got my own unit at work to supervise I made sure that we stayed close, even after I had to retire.  We've had picnics, parties and soon a wedding.  I know what's going on in their families more than in my own, even though my work family sees each other maybe every 3 months.  I sit with them and maybe not reign supreme, but grateful.  I'd like soon to reach out to those I messed up with, sort of my own 12 step program (Curious- Buddhists have the 4 noble truths, and the eightfold path [12] Jesus had 12 apostles).  Let them know I'm better, and hope they are gracious enough to forgive a middle aged fool.

My family, consisting of neices and my nephew on Jackie's side were over on the weekend as we assisted in moving one of them to new quarters, and then heading out to a local establishment for pizza.  This was repeated Monday. We spoke about being in therapy, looking for assistance in life.  These kids lost their Dad suddenly one November morning some 15 years back, and that loss has echoed down the years, as did the quickly added on passings of nearly 1/2 of the family within 5 years. We can talk about things...sometimes.  And that's a step forward.

My brother called (this time without the bad news which is normally the only reason my family calls)and asked to stop by.  He's always welcome, and he came with an old friend.  My sister in law died last year and now my brother has taken a step in moving on, and going a bit of back to the future with one his original girlfriends.  Both are widowed, the kids grown and gone. This is most pleasing, and I hope the his family approves.  We're all so familiar with each other (50 plus years of history) that we spent a lot of the time we visited catching my wife up on things on all things Lansingburgh.

My brother and I went over family history, the newly rediscovered gravestones of ancestors, and how there is a need to keep in touch.  I will try.  Else this is what happens....

(That's my recently rediscovered grandfather's grave site.  He's been alone for 40 years up there. Not anymore.)

Soon we will leave this planet with only a name and a reputation.  The reputation may linger for some time, the name a bit longer on a grave stone.  What do we want said of us?  After years of being a screw up, unaware that my own mind was doing the screwing, I want it to be said that I was a good guy who tried to help others, even if with just a laugh, or the touch of a hand. 

And who knew when to shut up.

Saturday, July 28, 2012

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.

Friday, July 27, 2012

Movies and Shopping and Tales, Oh My!

Some posts back I did a review of the film "Duet for One", the Julie Andrews film from the l980's about a famous musician who has MS.  The movie, derived from a play, was based on the life and times of Jacqueline du Pre, famed cellist (1945 - 1987), though fictionalized as Julie played Stephanie and the MS is already in onset at the beginning of the film (when Julie/Stephanie refers to herself as a "cripple").  Through flashbacks, we follow Stephanie in her arc up and down in dealing with the fading of her career, and the dominance of the disease.  I recommended the film for the fine acting, and very 80's feel of it.  Ms. Andrews was nominated for a Golden Globe award, and well deserved.

The film is available on You Tube in ten minute segments.

Now in 1998, came the story of Jacqueline du Pre and her sister Hilary in the film "Hilary and Jackie", directed by Anand Tucker.  Based on the book by Hilary du Pre'-Finzi and Piers du Pre' (the brother of Hilary and Jackie) the film was successful, but had critics in the music industry (and some family members) that the discussions of Jackie's personal life were questionable at best, considering many of the people represented in the film were still quite alive in 1998, including Hilary's husband, conductor and pianist Daniel Barenboim.

Emily Watson (no, not the actress from Harry Potter) and Rachel Griffiths play the sisters.  Academy Award nominations were handed out for the film, along with plenty of British awards of which Ms. Watson won two as Best Actress.  The film is available on iTunes, and other rental sites.

What set this film apart was the more graphic representation of MS, (again a generic MS) as Hilary loses her ability to touch, feel, and eventually control her body at all.  From personal experience with friends with MS, this representation of the disease is closer to the real world and kudos to Ms. Watson for her fine performance.  I was at first going to ask my wife to watch this, but then felt why make her more worried about what's coming?  Does she really need to see this now when I'm able to get around without a cane, or chair?  The mental difficulties are tough enough.

Jackie tells her sister in the film that "a cure is coming any day."  We just keep believing that, don't we?

Anyway, this is a fine film, and if you like classical music, do yourself a favor and listen to Jacqueline du Pre'...

Listen and watch: http://www.youtube.com/watch?v=UUgdbqt2ON0 and see what MS took from all of us.

Finally got to see Batman (The Dark Knight Rises) today. The movie is a little long, and you've got that "refer to the first two films but don't mention the Joker" problem, and the fact that Senator Patrick Leahy of Vermont has nothing better to do than show up in these films, and you've got about three hours gone from your life with a relative feeling of satisfaction that the trilogy (of three films) concluded well.  Decent performances from everyone.  I hope most folks in attendance at least pause to give some thought to the terrible events at Aurora, and the storming of the Stock Exchange mid-film with bullets flying and people screaming could not help but make you think.  My sister-in-law's minister's son (who I'm sure I've met at some point) was at the theater that night and was shot twice.  He is recovering at home and is in good spirits. (See, positive attitude?, belief in something? there it is again.)


OK, on to other things.  As I write this my psychopharmacologist should have appeared in court about an hour ago for further processing on his sexual harassment charges.  I'll be interested to see how that goes. Meantime I had to stop by there to pick up a script, and I could not help but notice that the staff was, uh, slightly older than previous hires at the practice.  Wise move there, Doc.  Next week I've got some face time with my psychologist and we'll be discussing how to move on this.

Look like Neurologist shopping is going to take a little longer, but we will keep on keeping on.

A shout-out to http://2nd.md.  Take a look at what these folks are doing in matching up doctors to people.  I've spoken with them about the problems MS people have getting a proper diagnosis in a reasonable time for proper treatment.  The web site is just starting up, but I have high hopes.  Faster communication between physicians (what I wouldn't give some days to get all my docs in the same room at the same time - as soon as I get some more docs) is crucial to getting treatment started, even if the treatment is nothing but observe.  At least there are folks who've got your back.

Talk soon.  Thanks for the e-mails of support.

Tuesday, July 24, 2012

Let's Go Shopping!

Yesterday I received a notice from my neurologist that she was moving on, so with that, and the upcoming court appearance of my psychopharmacologist, its time to go doctor shopping. Quick, dear, grab the catalogue!

Back when I was a kid the only catalogues I was interested in was the Sears and Montgomery (or Monkey) Wards catalogue, and then only in the weeks prior to December 24.

Now my interest is not in electric trains, or GI Joes, but now its in what people in the area can keep me functional and/or happily drugged, and more importantly who will pay for it.  My health insurance did not pay for my psychopharmacology visits so that was $90 a pop, then the script co-pay.  Now I need to start over.  My regular doctor recommended a group, and I'll go head after them for my bipolar scripts, but as far as the the neurological stuff, it gets tricky.

Now this is all personal opinion but it seems that some doctors specialize in different drugs from different companies, drugs such as Copaxone, Rebif, or Tysabri (and others).  My Copaxone costs $48,000 a year, and I'm sure the other drugs are comparable.  Fortunately my health insurance kicks in and I've only got the copay.  Gee what do people do who have no insurance and need that drug?   Right, Tea Party folks they should get a job that provides health insurance.  Hmmm, I am in constant though livable pain, my brain is foggy perpetually, and its time for another nap?  Or how about this one, I'm the ticking time bomb guy at your office, the quiet one who is nice and polite, and one day comes in as the Joker and you know the rest.  I'm sure you'd like to hire me, Tea Party person?  Fortunately, I have drugs dosed out to me to keep things on an even keel and for the most part they are.  But its my responsibility to make sure for the benefit of myself and others that I take what drugs I need to be the best Tom I can, no more and no less.  I  am sorry for those who have no insurance, and need meds as much or more than I do.  They do with less or without.

But the drugs also hide behind the suits.  Leaving my present neurologist, I contact a respected doctor's office locally, following the directions on their website, which said call for a preliminary appointment.  Once I got an answer on the phone, the receptionist immediately contradicted what the website said.  "No, we need your present doctor to send us the medical information, and then our doctor here will look it over and decide whether he wants to accept you as a patient."

Accept me as a patient? This doctor does MS.  I have MS.  Seems workable.  Although having Primary Progressive MS (no cure, no treatments, remember?) may not turn me into a real money maker for anyone, but at least you can count on consistent visits for a while, anyway.

OK, well you've got some forms you'd like me to fill out here on the website.  Should I-

"Someone from this office will contact you following the review of your medical material, and let you know about an appointment time and what you need to fill out."

Not what it says here.


So for the small fee of 75 cents a page that Albany Med will charge me to copy information only helpful to me, I can get you this packet, may I drop it off?

"Mail it.  Someone will contact you."


The really neat part is I'm going to be stuck doing the same thing for my psycho drugs soon (arraignment is July 27 for my psychopharmacologist).  There are few doctors in the Albany area who do what my doctor did, but that search will go on using the InterWeb.  The scary part here is, I've seen the size of my case file at my psycho.  Hope they ain't charging 75 cents a pop.  Did you ever notice by the way that little cent sign — ¢ — is gone from your keypad?  Probably been gone for years, and I'm oblivious.  But I started using an actual manual typewriter, kids!  

Mine was black.  I guess these were made before Corona met Smith.  I wrote two entire horrible and 
deserve to burn in Hades, reform and burn again novels on that machine.

And now with all this technology I can search and compare and search, and hope I find a psych before I run out of pills.  And tell everything all over again, and hope this person sees it clearly.

Then again, there's always...

More to come as the shopping spree continues....  

Wednesday, July 18, 2012

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!

Monday, July 16, 2012

Close to Home (and Hello Russia!)

Before I get to today's topic, I need to admit something. I do look at how many hits this blog gets, and right now we're closing in on 500. Now a good chunk of them are me checking spelling and doing edits when I need to, but I also look at where the hits come from, and naturally the USA is first, but what really surprised me is that Russia is third on the list. So for all my Russian readers:

                                         Здравствуйте, дорогие друзья!

I hope that my Russian visitors aren't just hackers or porn trollers, but a hit is a hit. There are  people in Eastern Europe with either MS or Bipolar or, lucky them, both.  I'd be interested in how they are coping. 

We're back to 90+ degree weather here in the Great Northeast so I am moving as well as I can in this type of environment, which is verrrrryyy slooowwly.  Air conditioning, fans, the mall and the movies  (This weeks flick:  Salmon Fishing in Yemen).  And using a bit of the air conditioning in the car - my car has over 100000 miles on it and I'm always a little cautious with it.  And gee, this month I'll actually finish paying for the car.

I stayed close to home this week, except for the previous blogged trip to Cooperstown, but I did opt to sit outside for a evening with my kids, er, I mean my former staff from Albany County DSS.  It was a retirement party for Linda, and the whole staff with significant others showed up

View Larger Map

I hope there's a picture up there. Anyway, we had the get together at Philly's in Latham NY, and oddly enough, the place, in its previous incarnation as The Lookout, was where my wife and I had our second date thirty years ago this coming December.

So it  had significance to both my work group, and my home group, and its more that word "home" that I'd like to talk about.  From some of the earlier posts in this series (and you've read them all, right?) it might have become clear that I don't have a great relationship with my family, in that, with the exception of one person, I'm sort of at the maybe you get a holiday card/maybe you don't level.  And that is sad, but it is what it is.  So the people that I've turned to since the diagnosises of bipolar and MS have been work associates, people with similar beliefs, and those that enjoy the written word.  They have become home.  Along with my house.  In the years before I had to retire we'd worked to get the house just like we always wanted it, but then a flood turned everything upside down and, to our surprise, gave us a chance to rip up and lay it down, start over and do it right.  We did.  The house is comfy and welcoming.  The yard is as green as I can make it, and after 20+ years, even that ain't much.  But on a snowy day in February, or during the holidays, there are few places that mean more to me, in fact none.  But in actuality....

My wife is my home.  Where she is, is where I want to be. I've been homeless, lived in a 1976 Chevette with all my clothes, cleaned up where I could, found a cot to sleep on.  And as long as Jackie was with me, it would have been just fine.  Fortunately, she came into my life then. Ain't been homeless since.
The staff I had dinner with last week is home.  We had just 18 months together, but all agree they were the best 18 months of all our careers, though I hope the younger staff gets a chance to do great things, as any proud poppa would want for his children.  For now we get together and I hear the latest in their lives, we trade stories, laugh and raise a glass.  It is good, and I am a fortunate one.

Lansingburgh is home.  Over the last few years I've become the family geneaologist and have studied who we are and where we came from, finding the graves and putting the stories together.  Through Facebook I've gone back to see the 'Burgh through the eyes of those who still live there, and those who once did.  In early August, I'll be having a sit down with some of those folks to honor my sixth grade homeroom teacher.  Yep. She's still around.  I'm looking forward to it. Just from the pictures the Facebook group puts up, I'm already getting an ever deeper appreciation of that place I grew up in and, yes the world moves on and things change, but you keep the spirit within.  For me it's always Summer 1967 and I'm ten years old.  And everything is still possible.

Hey, for those of you who read the Five Keys to Mental Health, you may be seeing some of those keys in place here.  Something to do. Someone to love. Something to look forward to.  Mental health is about strong roots, roots given by family in however you determine it, but having the ability to sway with the winds of time.  When the winds subside, you're still there.  To run a metaphor smack dab into the ground, if your internal house is in a good state of repair, you can weather any storm.

Lyrics from a Billy Joel song:

Home can be the Pennsylvania Turnpike
Indiana's early morning dew
High up in the hills of California
Home is just another word for you.
                          You're My Home

So home is where the heart is, as someone said.  For those of us with extra challenges, sometimes the doors to that home have been closed and locked, and we spend so much of our time banging on the windows begging to be let in that we forget or ignore the open door and warm hearth waiting for us just down the road.

And maybe that open hearth and home are there so that you can welcome another. 

Stop on by, we've got room.

And to my Russian friends -  До свидания!

More stories soon.  And to whoever the 500th hit is on this site, thanks.  If it's me, I'm welcome.

From Lisa at Brass and Ivory

Wednesday, July 11, 2012

The trip to Cooperstown

Route 67 to the Thruway, get on at Exit 27, off at Exit 29, go through Canajoharie, head for Fort Plain.

And end up right behind the Amish guy in the horse and wagon.

"Hah!" said BiPolar/MS. "Told you.  From the moment you woke up, we said this was a bad idea.  You're in pain, your sense of direction is not what it was, what if something happens? This guy will be stupid to see.  You'll feel terrible, and be all by yourself. And now you're stuck behind an Amish guy and his horse, who is pooping right now, by the way."

The horse, not the Amish guy.  The gentleman remained at the red-light with me, and a lot of others, and we all took a very slow left, heading up to Route 80.

Marty Appel was previously the Public Relations Director for the New York Yankees.  He's just written a new history of the Yankees called Pinstripe Empire (Bloomsbury, 2012) and was making an appearance at the Baseball Hall of Fame in Cooperstown.  Normally my wife Jackie goes with me, but she had to work, and usually passes on the authors' series, mostly going to see the ballplayers.  But I enjoy getting a chance to speak with baseball writers, and hear the stories.  So I planned to go.  And my Bipolar/MS archenemies immediately gave me a 100 reasons not to go because, well, that's their job. And I really pissed them off by going anyway.  I got on my Yankee gear (yes, this Mets and Red Sox fan has Yankee gear - I love baseball first) got in my car, and headed out.

And then right behind the Amish guy.  Great, now I'll be stuck behind this- oh, he's turning there, and he's waved or acknowledged every car or person on the street. That's nice.  And there are decent songs on the iPod.  OK, here we go, up Route 80! Woo-hoo!  (Damn, says Bipolar/MS, he's having fun.  Quick, let's make him manic.)  Route 80 is a twisty turny road that takes you from Fort Plain (home of Otis Young and Patricia Kearns Shannon) up through other very small towns and drops you into Springfield.  Through Springfield and on to Cooperstown.  It is the quintessential small town that knows its something special.  It's the home of the Baseball Hall of Fame.

Baseball was never invented in Cooperstown by anyone, let alone a Civil War General, but sometime we need a myth (sort of like "We're working on a cure for MS or Cancer") instead of the boring longer version.  But like I said, Cooperstown is the perfect place, total Americana, a small town where a young boy can do his best and become....                                                                                                          
                                                                                        James Fenimore Cooper.  The town wasn't named for him, but for his father.  However James made his own name by being one of the first Great American Writers, most notably "The Last of Mohicans" otherwise known as that Daniel Day Lewis movie.  Cooper wrote a number of books based in early America, but I don't know if anyone reads them outside of early American Literature classes.  I haven't, but I do know that Last of the Mohicans was my Father's favorite (I never saw him read a book, so I figured it was the original movie from 1932 or 1936).  Either way, film or book, he would always yell
Chingachgook! when we'd see the old film at Fort William Henry in Lake George.  It's not a trip to Cooperstown for me unless I stop by and saw hello to the Coopers at the cemetery.

It's not a maudlin thing at all, (sorry Bipolar/MS) just respect from one writer to another.  Always has been.  I have the whole Cooper collection at home and I will read it.

Back to baseball, I made my way past the library .....

past the statues that give tributes to the Negro Leagues and the All American Girls Professional Baseball League...

I've had the honor to meet many of the Negro League players, and some of the lady ballplayers, and I highly recommend checking out both.  Email me if you'd like some recommendations on readings.

Moving into the building, I head for the admissions desk.  "Only one of you today?" the guy asks.  "Yeah, my clone had jury duty."  "What?"  "Nothing, nothing."  I get my ticket, walk into the Hall and see a lot of stairs to go up to other floors ("Try'em", says Biploar/MS, "you need the exercise.") Not today, Bunky.  I walk by the statue of my man Buck O'Neil (who belongs inside the Hall of Fame on the plaques, instead of outside, but that's what you get for annoying the white guys into remembering their foolish prejudice), through the plaque room with a tip of the cap to the new inductees Barry Larkin and Ron Santo (why do they wait so many times to induct someone right after they die, even when they knew the person was ill?), and back to the small but cozy bullpen theater.

The presentation took about an hour with Q & A, then a book signing.  Mr. Appel was genial and had plenty of stories of Yankee glory and, well, a few bumps in the road. 

Book signed (that No. 15 is not me, by the way- I wore my Mantle No. 7), and out I went and bought lunch, sitting in Cooper Park for a few minutes of quiet time.

That's the Baseball Library and the statue of James Fenimore... in the background.  Where he was seated there is where his house was, and where he wrote.  I looked there as I planned this blog.  Would James have blogged about the growth of the town and the nation in the first part of the 19th century if he had the chance?

One more stop besides the stores.  There was a ballgame scheduled at Doubleday Field, but a little too late for me.  See, I'd pushed Mr. BiPolar/MS as far as I could, but I really can't get away from the energy peaks and valleys that occur, and three o'clock is definitely valley time and the pain had kicked in.  So after a quick stop at Doubleday Field...

it was time to head home.  We'll be back, but we tend to avoid the induction ceremonies as the crowds and heat is a bit much, though if Mike Piazza makes it next year, all bets are off.  So I headed to Stagecoach Coffee (a memory not just of Cooperstown, but my time at DSS in Albany [State Street]), got a mocha and took off for home.

Wait, one more stop....

The lake, the park, the other museums...there is always something new and different to see, and just as much the sameness, like any small town.  I love this place, and even the ride home makes me think about another visit.  And for today anyway, Mr. BiPolar/MS can kiss my bat, ball, and glove.

Sunday, July 8, 2012

Sorry About That, Whoever You Are

I saw you at Marshall's Home Goods in Clifton Park on Friday.  You, a person I had worked with for six years.  You, a person with whom I chatted amicably no matter what was going on in the office.  We had our differences, but it was never personal.  We had fun.

I just wish I could remember your name.

I never go to Marshall's, but I'd just left the movies (Spiderman [yes, go see it]) and was getting ready to head out of the mall, but a few more minutes in air conditioning wouldn't hurt, and you know, Marshall's has all kinds of stuff.  You never know what you might find.  Like New York Mets uniform tops.  Not T-shirts.  Uniform Tops.  Plus other T-shirts - Even a Yankee shirt (Mickey Mantle) which I'll wear when I head to Cooperstown on Tuesday - stay tuned for that.

So there I am walking around Marshall's, made it through the store and stood in line, listening to the screaming children and complaining adults.  I turned and saw you, looked without actually looking (glancing around at things, look back, glance around, and look back).  You were there with a friend/relative, and what passes for a brain now in me said "Yea, that's um, um......."

Now when I tell other people this, I always get, "Yeah, and I misplace my keys. Means you're getting old."  Yeah, I'm getting old (and grateful for it).  And yes, I walk into rooms and forget why I'm there.  But when you live in bipolar/MS world, and everything is foggy, drugged up or not, you take this as a given, all the time.  A very touching story I read recently was about this gentleman just diagnosed with MS who realized that whenever he kissed his spouse in the morning, he would say "wife". He thought it was just as one of those cutesy things, as his wife did.  Wasn't.  It was the man reminding himself that this was his wife.

So instead of going through the embarrassment of walking up and saying hello, and making it quite clear I was fumbling for a name, or even if you noticed me and came over and started the conversation, I had to hightail it out of there.

Of course, I didn't remember who you were until I was out in the parking lot, and said your name out loud.  Fortunately, no one was around to hear me.  And I figured you were long gone, so no point going back.

To the car and home, thinking about it.  I spoke of small fears in a previous note here.  A major fear is that I would be at one of those very rare family get togethers and I would forget who is there.  I would forget my own family.  Like my father did.

One thing I know is I do treasure those people I worked with, that hardy band at DSS.  More on this and the trip to Cooperstown.  I'm soloing.  I still remember the way.  I think.

Wednesday, July 4, 2012

Fear of Fair-lure

Hope everyone enjoyed their Fourth of July, whether it was just a work day or a patriotic day, or a  chill day (though we're no where near chill time here, a lovely 86 degrees NOW).  We had family here for part of the day, and we're saying a farewell to some of the gang who are moving back to Syracuse for job purposes, among other things.  We wished them well, and then one of them said the words that sent the chills down my MS clear but still painful spine.

"Why don't you come out for the Fair?"

Yikes. The Fair.  No, not just The Fair. The Great New York State Fair (Aug 23-Sept 3).  For many years my wife Jackie and I traveled out to the Syracuse to stay with relatives and go to The  Fair.  It was usually a weekend, we'd come out Thursday or Friday and stay until Sunday, heading to the Fair early and staying late.  We'd walk all over...

We'd walk all over.

I'd walk all over the place. Horse show, rock show, Bob Dylan, Boston, and even the free shows would have great folks playing like Charlie Daniels (and us dancing with the kids, swinging them around to the "The Devil Went Down to Georgia").  And the food, oh the food.  The sand sculpture, the butter sculpture.  Cows.  Bunnies. Hokie crap.  Maple snow cones.  The train at the far end of the grounds.  More cows.

Some of the funniest and wonderful moments of my life happened there, ones I have to tell you in person.

I'd walk all over then.  But I can't now.  Oh, I can get around, but every step hurts.  The MS crowd knows the drill.  I can take pills, and sometimes they help, and sometimes they don't.  I'd have to sit down, what, every one hundred feet?  Where?  They'd have to drag me everywhere. Do I really want to go through this?

"Sure," I said, "bring the wheelchair."

The crowds.  All the pushing and shoving and even an "excuse me" now and then doesn't make it any easier.  I suppose I could walk, pushing the chair and get in it when needed.  Maybe a walker (four wheels please).  Or maybe I should just stay home.  I suppose they can drop me at a picnic table for 8 hours or so.  Keep the salt potatoes coming (I hope my doctor isn't reading this).

When most of the family moved away from the Syracuse area, we stopped going to the Fair, having had one last blowout day (with the Dylan concert).  We always thought of it around Labor Day.  "Remember when the guy started singing at the same time the State Police started their gun shooting demo about fifty feet away?  Every time.. the guy started singing... the troopers started shooting.  It went on and on and on...."

Like I said, you need to see the demo.

So we'll see what happens.  This will be the first large test, pre-DisneyWorld, of what I can do on a large scale.  Maybe we won't go at all, and I'm psyching myself out for nothing. But for the first time I am thinking of what I have lost, not just what I can still do.

Tuesday, July 3, 2012

Movie Time!

You know, there are days when you think you're doing real well with these disorders.  This morning I was up early, shared breakfast with my wife, sent her on her way, and then did some reading.  Following a chapter of a Buffy the Vampire Slayer story (yes, I enjoy the classics), I did my stretches, exercises, and then hit the road for a mile walk, headphones and all.  Back home, I grabbed the newspaper, plopped on the couch, opened the paper and immediately fell asleep for one hour.  This set back all other planned activities.  Yesterday MS/BP let me ride my bike to run errands, then work in the yard, and get a lot of reading done, including Chris Matthews' book on JFK.  Thought I could get two days in a row.  Silly MS boy.  Now since I'm all messed up and foggy as a London night, I'll try this.

Let's go to the movies!

It's Tuesday as I write this and I usually take in a flick today at one of the local movie houses.  It's also two dollar popcorn day, and if the person taking the money and giving you your ticket is "of a certain age", I can squeeze in as a senior.  Once you hit 55, and have a pension to live on, the words "early bird special" start coming out of your mouth.  So over this summer I've seen everything from Prometheus to Abraham Lincoln, Vampire Slayer.  I'll leave reviews of those epics to others, but just a note to the Abe Lincoln producers - please remember to keep that mole on his face all the way through the film, and by the way, during his Presidency, he had two other kids aside from Willie.  I know, I know it's all made up.  Alas, that's where some kids get their history from.

Anyway, below is a list of movies (and TV show) that featured a character who was either diagnosed bipolar or with MS.  No one would ever figure on someone who had both, right?

Bipolar disorder


  • Hillary and Jackie (1998)
  • Duet for One (1986)
  • The West Wing (TV) (1999)

Bipolar is winning the race for most characters, probably because if you need someone manic, you can get it, if you need someone depressed, eventually you'll get that.  Now these lists are not complete certainly and are from various sources around the web.  You can find most if not all at Netflix or Amazon.  I have seen some of these films and I intend to see more, but here's the one I'd like to talk about:

Duet for One.  This is a small film, and is really based on the life of Jacqueline du Pre', so I guess you can watch either of the MS films noted here and get the same idea (See, it's not that Hillary and not that Jackie - it's the du Pre' sisters, Hillary and Jackie).  Anyway, Julie Andrews was nominated for a Golden Globe for her performance as a concert violinist who contracts MS, and the movie is about how the decisions of her life after diagnosis affect those around her.  You also get to see Julie undress, have sex with Liam Neeson, and say the F word a lot, which to a mind that still sees Mary Poppins and Maria from Sound of Music is a little disconcerting, but Ms. Andrews is a fine actress, and is supported by such greats as Max Von Sydow and Alan Bates who I think was in every British movie during the 70s and 80s.

But here's what bothered me.  The character Ms. Andrews plays, Stephanie, constantly refers to herself as "a cripple."  Now this movie was made in 1986, and since we're looking at 25 years ago, there were limited treatments, if any, and so she deteriorated at a faster pace, but a cripple?  Perhaps I'm looking at the film (and before that a successful stage play) from too far away, or perhaps its a British thing.

But take a look at it yourself....

The whole thing is on You Tube. 10 parts but easy to follow.

Do you think we could ask Martin Sheen if he'd like to be President again?  I'd rather have the guy with the MS than what we've got now on either side.  Heck, we did pretty well with the guy in wheelchair.  Oooops, no politics.  Sorry.  I'll be viewing Hillary and Jackie this week and will add some comments later.

Of course, these diseases are always good ones to flare up just when the story needs a push.

I'd like to close with a bit of dialogue from the film, this being said by Stephanie to her doctor.

"Sitting there year after year listening to miserable people like me tell you how the world does destroy them. Have you ever once felt anything like the pain they feel? All the despair, all the fear? You make your living from their suffering and you don't understand a shred of it. Anyone of us is more qualified to speak than you because we have been there. We're still there."

AKA-If you ain't got it, you don't get it.  Other films? or TV shows?