How to be normal, Part 1 - Root for the Yankees

OK, this one is for the actual bipolar/MS or some version of both gang.  You may get the feeling that even on your best days, the world seems a little off.  Do you?  I mean do you see families together at a restaurant or mall, or some place, laughing and having a good time, and then you are sitting with the people you've been told you are related to, and they do not or will not acknowledge that anything is wrong, or let you know its is your own fault (Cheer Up! What? Another nap?) you are "that way", if they even acknowledge it at all.  Or maybe they just whisper about it later, and if you think they might be, well, you're paranoid.

This is assuming they associate with you at all, of course.  Now many families are nurturing and helpful and are fully there for any member of their clan who has challenges. They truly do want to help, but we all can't go live with Glen Close.  She just hasn't got enough rooms.

Thanks for what you do, Glen, and I know you suffer as well.  Glen is a Mets fan, and boy, do we know suffering.  But we can walk away and root for another team, but we also can't.  Normal is rooting for the Yankees, living vicariously through their triumphs, even when not totally successful, always there near the top, entertaining their fan base and giving thrills galore.  You pass that down to your kids and even when the team goes into minor troughs, you know they will bounce back.  Someone will come and do it.

Mets fans are happy finishing third.  Oh, its not like we haven't had our moments, wonderful moments of manic play, great performances and championships.  We just know there's a lot more deep, deep lows.  We came from ineptitude in 1962, losers dismissed for season upon season.  Then suddenly came a miracle in 1969, the same thing as when a bipolar person wins a Pulitzer or some other big reward.  Yes, there's something more going on than the odd behavior.  We can succeed and do very well.  Maybe not for long, and we will hide our problems in drugs, alcohol, and poor performing bullpens.  We will let wonderful people leave our lives because we think, or letting the somebody who is doing the thinking for us say, it will be helpful.  Please see the departure of Hall of Famer Tom Seaver (twice) and the recent departure of 2012 Cy Young Award winner R.A. Dickey.  It leads to longer times or holding things together before depressingly empty stadium, old and new. Right?

Mets fans will now say, well what about the 1986 team? That team won the World Series. Yes, and fun it was, but that team, despite its talent, and the work behind the scenes that built up to one crazy victory that barely squeaked by two talented teams.  If it wasn't for some bad pitching in the bottom of the tenth inning in Game 6 of the World Series (not so much Buckner), the Red Sox would have gotten their Curse of the Bambino thing out of the way 18 years sooner.  The late 80's Mets then floundered through the next five years and fell back into terrible.  A team that should have dominated fell short due its own excesses. Like drugs, and the manic thought of its greatness.

Then the Mets tried again around 2000.  A good group held together by a manager whose number one fan was himself played better than they should have to get into the playoffs, and then into the World Series, against of all teams, the Yankees, the one team I was praying for them not to play.  As figured, it was a quick one.  The Normals overwhelmed the Bipolars in five games.  Another slide, and recognition that help was needed stabilized the team in the mid-decade, but self doubt brought it crashing down once again to now, even with a change of scenery at a new stadium, nothing has worked since. We blamed Carlos Beltran for striking out to end the Championship game (I blamed Carlos Beltran). He stood there and watched strike three go by.  His fault.  Back to depression. He did this.  Dump the doctors again. Try something else.

The new doctor in charge of the team, Sandy Alderson, is building from the bottom up, hoping long term treatment will  better than shock therapy.  The Mets remain moribund, looking out the window and waiting for something to happen, something no doubt terrible.  Now the Normals, that is, the Yankees have not spent as they used to, and look like they may be making changes, with confidence in a farm system that will fill their needs as superstars Jeter, A-Rod, and company age out.  Still some great players there.  So life goes on in the Bronx. A hiccup here and there, and the Normals take it in stride.

The Mets don't really have an outfield yet.  I mean you need three people in the outfield, and we've got maybe two, or two and a half.  Might mean a lot of doubles for the other team.

So there it is.  The Mets are the team of the bipolar.  At least Glen Close and me.

So if you want to be Normal, like "those people", pull for teams and organizations that just keep rolling along - the Yankees, Microsoft, anybody with the last name Kardashian, Alec Baldwin, and the Department of Defense. 

So this summer, I'll be sitting in half empty Citifield, rooting for the guys in Orange and Blue, whoever they are.  Come sit next to me and I will tell you stories of a place that's only a shadow now, and of the men who played on that field, and what, now and then, can happen to make your life feel amazing.  Makes it all Amazin'.

Bipolar Stadium.  That's where we play.  Spring training begins in two weeks. Hang in there.



Year 4: Yoga for the Easily Tripped

The darkest part of winter is upon us and we scramble for light and good feelings, aching for spring.  Well spring training for baseball starts, at this writing, in three weeks.  Once you hit that day, when pitchers and catchers report, you know you can hold on until spring.

Until then, we sit on a mat in a huge empty room and move what muscles that still work, minus three fingers that have gone on strike, stand, sit, and call it yoga.  Ive done it before.  In fact right this time four years, a beginner yoga class.  And looking back on it, I can see that it too flashed some warning signs.  Things that were easily being done by just about everything had me falling over.  I could not retain my balance, not all the time, just sometimes, but I was concerned.

And now I’m just the MS guy in the corner (“do the best you can”).  I do.

There are three people in the class, plus the instructor. And she’s got the MS guy in the corner, the lady who’s never taken a class of anything before, and Jackie.  The instructor saw that she needed to slow way down for the first two, and move at a normal pace with the last one (i.e. Jackie). 

So I was ready:

See? Ready to go.  Alas, my instructor saw this:

So we tried various things and we got to the eventual look that we were hoping for:

Just remove the hair, add about 30 pounds, a pair of glasses and a mustache, and you could not tell us apart, except for the sweating and the shaking of the muscles (mine, not his).  After about 45 minutes of trying to stand up....

No, no not quite, but we tried.  After about 45 minutes, we got the cue to do "savasana", also known as

"collapsing."  My favorite part.  The instructor took us through it in a peaceful, quiet, way, relaxing muscles and trying to talk just loud enough for us not to doze off, which I surprisingly did not do, perhaps because every muscle in my body was screaming!  But we ended and "namaste'd" all around.

One down, six more weeks to go, unless they cancel the class out for being too small.  I hope not. There's not much else going on in the winter and its good to have the things to look forward, an absolute most for "people like me".  We can plan for the class, then a lunch and errands, etc.  A chance to get out of the house.  When you've got neuro and mental diseases that can not be cured, but only monitored, you need the structure in your day.  No support group this week, either.

These diseases in their basic form attack the brain functions, but not the mind.  And it is the mind that will control our ability to live better. Yoga and exercise, and even a light commitment to both (and feel free to define what exercise is, but I don't recommend walking to the pantry for another bag of Cheetos as a possible definition). Keep moving, keep thinking, keep raging.

Or...

Thanks for reading. More soon.

Year Four-Falling off Ladders, A Learning Experience.

I had a sudden interest in dust yesterday.  I was sitting on the couch, reading, and waiting to dash off (if you want call it dashing now) to my psychiatrist appointment, and looked over at the bathroom door.  I could see white on the wood stained panels. Should take care of that, I thought.  So I got up and grabbed the Pledge and did some touch up around the place, getting bath powder and general dust off of surfaces in a few rooms. 

Declaring victory, I went on my way, saw my psydoc - another whole post for that, ran a few errands, lunch and home.  Settled back and watched some DVR'd shows.  While I was sitting on the couch, I looked up and saw the ceiling fan.  Wow, was that thing dusty....

And since I was on a dust warpath (forced air heat can do that) I grabbed my official duster of high things I got at an "As seen on TV" store.  Couldn't quite reach the thing. In the past, even the recent past, I would get a kitchen ladder like this one...

in fact exactly like this one, and get up and do what needed to be done.  Nope.  One step up (and those are paint stains, by the by) and the task was immediately postponed until today when Jackie was home. I, being alpha male around here, got my Swiffer and then the kitchen ladder and had one foot on step two and one on step three, and the swiffering was completed.  And then I realized there was no way to get down.  Again, like Sunday, the body would not move.

So instead of standing there like a swiffering statue, I called Jackie.  She ran in from the kitchen, took my hands in hers and held on as I stepped down, alpha male with tail between his legs (uh, bad visual). We later had to measure a bathroom fixture for replacement and we did the same routine.

I've never been a macho kind of guy.  If I was I wouldn't be telling you these things, I'd do the "suck it up" routine.  But I may not be on the drugs that I need either, or in therapy. Still, asking for help? From a female persuasion person? Puh-leeeze.

Already did it.  Part of the learning curve.  Reached out to the handy-dandy fix it guy, and we began working out fix it time later next week.  Jackie did the majority of the snow shoveling, and I did mop up with a broom.  The new normal.  It is starting to slip, and I don't mean just off step ladders.  House and big yard. Chores. More demands.

We need to get out of here.

I shared Sunday's tumbling news with the support group. Their advice...never be without a cellphone.  I've avoided one for years, used it only if Jackie asked.  Things change.

More on the psydoc soon.  Thanks for reading.

Year Four - Falling Down

I fell over today.  Now just about every human being can say that statement, so I'm feeling part of the vast collective here, but there's always a difference when you add MS to the mix.  Yes, I know, I don't have official MS - see the previous post- but the many lesions on my brain were having a great time with me today.  Because as Dean Martin says....

Dean and I are not related, by the way.  And winter is a marshmallow world.  For me, in more ways than one.

It's a typical Sunday morning for us.  Breakfast, the newspaper, CBS Sunday morning.  Jackie had some errands to run so we agreed to meet at Dunkin' Donuts around noon.  Off she went and I futzed with some chores and then grabbed some laptop time.  I noticed that a plug had become loose under my desk so I slid down to my hands and knees, crawled under the desk, and tightened up what needed to be tightened.  I backed out slowly so as not to hit my head on the edge of the desk, nice and safe.  And then got ready to stand up.

Nothing happened.  My knees would not work.  I did the internal reboot that MS sometimes requires, and tried again.  I dragged my right leg up and then, holding on to my chair, pulled up the left leg.  Here's where the marshmallow stuff occurred.  It was like Dean and friends had replaced my knees with Marshmallows.  Walking became weird, and dangerous.  If Monty Python needed new entries for the Ministries of Silly Walks, I had a doozy.  Worse, it was time for me to head out and meet Jackie at DDs.  A slow dragging slog across the living room ensued,with sponges and Marshmallow Fluff for muscles and tendons.  Must get iced coffee.... Eventually I was able to get everything together and get out the door, but it was five minutes before the legs started to function at the (new) normal level.

No problem driving the car, but after a donut and coffee, Jackie headed off on more errands and I returned home, this time to clear the driveway of ice and snow.  I stepped into the garage and grabbed a box of holiday ornaments that were going to the shed we have on the back of our land, and where my ice scraper was.  I carried the not overly heavy box with me at about tummy level, heading toward the sloping snow covered back yard.  I saw some ice by the back of the house where it had built up from the melting roof snow.  Simple to step over that.

But my leg didn't go up as high as I thought and then down I went, the box of ornaments gliding away like a sled full of happy Hallmark people.  Okay, I fell over.  Happens. Get up.

I said, get up.  Nothing.

Now this is where those mind movies happen.  What if I'm stuck here? What if I just can't move? The lesions have opted for a blitzkrieg, and here I sit totally occupied.  I'd have to wait until Jackie came home.  All kinds of scenarios played out.  But then I said to myself what I normally say - Get up, and that is an order.

So I did.  Slowly, deliberately I got up, this time no marshmallow knees, and grabbed for the box and made my way to the shed.  I stepped in my little hovel away from home, and breathed deeply.  My body had responded, albeit in its time.  And I was able to get the work done that I needed, Jackie pitching in when she got home.  Then football, college basketball, dinner and Downton Abbey.

Maybe it was a warning sign, maybe not.  I'll admit to being slightly scared, and since I'm writing this at 4:14 AM, some achy muscles have added to the uncomfortableness.  I've got support group and other projects for the day, but I will see what I've got available as far as energy is concerned.

Marshmallow world, my sore butt, Dino.

Thanks for reading.

Year Four - The First Real Symptom

So here I am again, I guess it must be fate (oops, sorry, almost fell into a Peter Cetera/Cher reverie there).  Probably it's because I'm off the really good meds right now as my psychiatrist opted to take a quick vacation with his kids back to South America and sending out a group message on the phone to reschedule patients.  Alas, when the phone rang here, Jackie picked it up and, as my poor darling is partially deaf (hearing aids and all), could not understand the message and hung up.  So I had no clue and when Monday came I went to prescheduled appointment only to be met with a locked door, and, eventually, the receptionist.  She explained and a new day was picked.  I asked about scripts I needed and they were put in place.  Unfortunately they were all the wrong ones.  I take Klonopin and Nuvigil, which are controlled substances in New York State.  You need to be given the script right from the doctor, so I called and waited and finally this morning I heard the scripts are ready.  So another joy ride to the psychiatrist later today, and then the pharmacy.  I'm going to put the previous in italics: So another joy ride to the psychiatrist later today, and then the pharmacy.  I at least have health insurance that lets me do this, for which I am grateful.

Earlier this week we had our support group, and the gang talked about the holidays and how they did or did not thrive through the two week break in meetings.  I'd like to discuss Mrs. J.  She is a recent widow and has no enthusiasm for any part of life except her little dog.  She can drive, but finds it exhausting.  In fact everything is exhausting.  So she goes nowhere and sees no one.  She talked about her late husband, and what a music enthusiast he was.  I just asked the question "What music do you like?"  She told us, and we encouraged her to play music, and recommended stations on the radio dial that she would like.  I told the group that I try and have music going all day, because, frankly, when the house is silent is when the voices creep in.  Right now I've got a new age channel playing Earth Lullaby by Jennifer Zulli.  If I need to go someplace early in the day (like unrescheduled psychiatrist's appointments), I'll crank up the rock and roll on the iPad, and dance, or something like it, around the house. Fortunately the house is back from the road with lots of trees and bushes.  Gets the motor running for a while.  Music speaks to me, at any rate, whether it be Beethoven or Roll Over Beethoven or A Fifth of Beethoven.

And it helps to have it as we move into Year Four.  Now I may not have the classic version of MS, but I do have an idea of what's going on in my head and things seem a little cloudier than last year and my balance is a little more off.  But here's the kicker:

I am a devout Trekkie, as those who have read these posts know.  As said devout person, I know how to do the gesture.  There's lots of people who can not for whatever reason.  A few weeks ago, I was watching a Trek rerun (counting down to the new movie) and I made the hand signal for Live Long and Prosper.  Only my hand did not respond quite right:

The left responds the same, only its just the pinky that doesn't get the news about what its supposed to do.  By the way, that's my actual hand, and not something I grabbed from Google.  And while not being able to do the Vulcan symbol is not a big deal (except at the movie in May), but it is another manifestation of losing more control over the body, i.e. the lesions doing their thing.  You can add this in with my toes kind of going their own way, and the extremities are showing the road ahead.

One good thing is that I'm not as far as long as my dad at the same time frame.  I've spoken enough about it here in previous posts.  I'm just as trapped inside, but I watch this with a wonder that I am pretty sure he never felt.  I know what's coming and am working as hard as I can to slow it down. I've still got a lot of things to do.

May we all Live Long and Prosper.

Please turn in your MS card on your way out

Last post I noted that my wife Jackie and I met with my neurologist on 12/31/12. While we did get the good news that the lesions have not moved, which, we hope, means that we're holding off the disease with exercise, brainwork and attitude.  Since I can't take a pill to kill off MS, I'll go with that.  Yay, us.

Now this of course, would mean that I have MS.  You see, doctors are always comparing you to charts and graphs as to what category you are in. Bipolar has a number of levels and it depends on your actions, thoughts, and deeds to figure out where you are and what treatment can be recommended.  This is so that medical professionals can report their findings to insurance companies so that the companies can pay their fees, etc. to the doctor and his organization.  It's been this way for a long time and whatever Obamacare turns out to be, won't be changing for a while.  This also allows for a consistency in diagnosis as the patient moves along, everyone has the same frame of reference.

And as a person with Primary Progressive MS, I - oh, wait (snap) I forgot. I don't have MS now.  I did when I walked in to the neuro's office on Monday.  When I came out, I had Demyelination Disorder (Double D).  See, I don't have any lesions in my spinal fluid or in other areas where those things go to create havoc, just in the brain.  And since to have MS, you need to have more lesions in more places, I just don't make the cut.  So I've moved from ICD 340 to 341, out of MS but still neuro diseases.  ICD stands for: International Statistical Classification of Diseases and Related Health Problems.  They are the ones who wrote the book.

"So what does he actually have?," my wife asked.

The neuro shrugged. "I don't know, but it does not fit the categories of the McDonald list for MS, which makes him a 341."

Here is the McDonald (a research pioneer in neuro diseases) list, recognized by neurologists as the defacto reference tool...

Clinical Presentation	Additional Data Needed
* 2 or more attacks (relapses) * 2 or more objective clinical lesions	None; clinical evidence will suffice (additional evidence desirable but must be consistent with MS)
* 2 or more attacks * 1 objective clinical lesion	Dissemination in space, demonstrated by: * MRI * or a positive CSF and 2 or more MRI lesions consistent with MS * or further clinical attack involving different site. New criteria: Dissemination in Space (DIS) can be demonstrated by the presence of 1 or more T2 lesions in at least 2 of 4 of the following areas of the CNS: Periventricular, Juxtacortical, Infratentorial, or Spinal Cord.
* 1 attack * 2 or more objective clinical lesions	Dissemination in time (DIT), demonstrated by: * MRI * or second clinical attack New criteria: No longer a need to have separate MRIs run; Dissemination in time, demonstrated by: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or Await a second clinical attack. [This allows for quicker diagnosis without sacrificing specificity, while improving sensitivity.]
* 1 attack * 1 objective clinical lesion (clinically isolated syndrome)	New criteria: Dissemination in space and time, demonstrated by: For DIS: 1 or more T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord); or Await a second clinical attack implicating a different CNS site; and For DIT: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or Await a second clinical attack.
Insidious neurological progression suggestive of MS (primary progressive MS)	New criteria: One year of disease progression (retrospectively or prospectively determined) and two or three of the following: 1. Evidence for DIS in the brain based on 1 or more T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions 2. Evidence for DIS in the spinal cord based on 2 or more T2 lesions in the cord 3. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)

You can basically say there are five round roles.  Alas, I am a square peg.  Probably many of you are also.  It's been said that MS is a single disease with only 500,000 variations for the 500,000 people affected by it (or its been said now). I admit there is a lot of gobbledygook medical speak attached here, and you might want to hit the Google button to learn up.  But in the long run, it doesn't matter.

"It doesn't matter what the name of the disease is for the sake of insurance companies and international organizations." I told my neuro. "What matters is what it means to me. When I wake up, assuming I got some sleep, how do I feel? Can I walk well? How dizzy am I? What can I do today? I'll still call it PPMS until I hear something different, a diagnosis from you.  Since I'm taking no pills, and the only chance for a full life is up to me, what difference does it make? That disease name explained my father's suffering and mine so far.  The only Double D I know is Dunkin Donuts."

(Yeah, I know. Enter your own joke here.)

Buddha taught that all sentient beings know suffering and are experiencing it every day of their lives.  What matters is how you deal with it for yourself and recognizing that others suffer as well, even the most well off among us.  The compassion you have for both yourself and other's suffering, whether that suffering be from neurological disease, hunger, a bullet (both visible and invisible), other illness, lack of love, or whatever, determines the quality of life you can have when you open your eyes (internally and externally) each day.

I asked my neuro if I should turn in my MS card, and not go to support meetings. He just smiled and said "No, you're too important."  I'm not, but like I said in the previous post, this is the new mission and this is what I do.  Hope to see you at the next meeting.

Thanks for reading. More to come.

Chart courtesy of Wikipedia.
 
 

Two Years before the MaSt.

Hello, campers. If you are reading this, congrats on your literacy! You must not be going to public school anymore.  If you are reading this after 1/1/2013, you're not only literate but stood with the rest of America and peaked over the fiscal cliff to the Abyss below.  And also you've gotten through the holidays once again.  Congratulations on that more than anything.  Politics and the nonsense of our representatives in Washington is beyond our control, except for voting and yelling at them.  But the last two weeks can tough. We all know the routine of forced smiles...

 or good old sullen behavior while thinking "Will these people ever leave or should I?"



while making sure there's enough chips and dip for Uncle Morty, the guy who gives your kids inappropriate DVDs from the dollar store.  "Hey, that's got Jackie Chan in it!" But finally people go home or you do and you find yourself wherever you are, and we can let it all go, or try.

I looked back on 12/31 for a couple of reasons.  Two years ago was my last day at my job.  I said goodbye to my staff, or they did to me, and at 4:30 my day was over. No brass bands. No committee from the department. No party.  There was one worker left, and she was talking on the phone so I gave her a wave, headed for the door, and did what I always do at then end of a 30 year mission. I grabbed for my...

 

and called for a beam out.  Done.  I miss my staff, and we've gotten together a few times for fun and frolic.  But one is retired, one has moved on another job, and others are looking into opportunities.  It's going away.  Even in my dreams, it fades.  I try and stay at my job, knowing I could help, but I either can't find my car, or the people at my old office disregard me or take no notice of me. I'm a ghost.  Two years and one day ago you listened, but not now.  But this is what happens.  In non- dream life, I've visited my old stomping grounds once in the last 24 months, said hello, and got out of there fast.  Faces I did not recognize - for medical reasons and not ("Oh, please don't say hello," I think, "I can't remember your name. Just wave. Yes, that's it. Waving is nice, whoever you are.") made it clear I don't belong there.  I am not that anymore.  On to our next mission, Mr. Sulu.

 

 

So I'm just this now.  Then I think about another New Year's Eve around the time I started my job in the early '80s.  Jackie invited me over to her home for a private dinner, just the two of us.  I tossed on my best clothes, even my white jeans and one inch healed black shoes.  Even my best tan leather jacket....

 

 

which seems to fit that fellow in the picture better than it ever did me.  Anyway, we'll call the evening a success, despite Jackie spilling red wine all over my (did I say white?) jeans - the jeans were still attached to me, by the way.  And thirty years from that night, here we are still.  Jackie made chicken parmesan as she did that long ago winter's evening when two shy people were gradually finding that maybe this other person was the one. This time Jackie used actual chicken breast, and not a fake crunchy chicken patty. It reflected our new reality.  We've taken each other's hand and walked these roads, such as the one to the neurologist today.

 

A new MRI. The lesions have stopped.  We are holding the line. Whatever I am doing, with the help of so many kind people, is working.  Oh, the enemy still has plenty of fight, but we still have time to do what needs to be done, and have a blast doing it before the MSegeddon.

 

This is me now, letting go of what I no longer am, and ready for new orders.  New mission. This one.

 

I am grateful for your attention over these months, and look to continue for a while yet. More to come.