October musings, Chester Arthur, and stuff like my birthday.

October has arrived and with it comes a government shutdown, baseball playoffs without the Mets again (but our first runner up, the Red Sox, are back in), my 57th birthday, therapy classes, and an MRI and all the time I need to put them all in the proper order of enthusiasm, considering that to make it a perfect month all we need is a colonoscopy, but my doctor told me we can save that for next year.  Guess you can't have everything.

I'd written this whole blog out in one of my note books, and what I saw there later this week was a lot of whining, so I scrapped it.  There is something to letting things rest a bit, and then reread it to see how bad it actually is, and it was, so let's go with a new version.

I never watched even one minute of Breaking Bad, but always had plenty of time for the folks stuck in the zombie apocalypse on the other channel.  Crystal meth versus active dead people.  A drug that can destroy lives versus lives that were destroyed by a plague, only the victims get back up and want to eat you.  Actually, not that much difference.  I never saw Walter White in the waiting room of the Social Services department where I worked, but I sure saw his customers. The Active Dead People.

Walter

Walking Dead's Milton

So I had a meeting with my neurologist last week, and if you consider that my co-pay is 15 dollars a visit, that means I pay one dollar a minute to touch my nose and his finger, walk in a straight line (not happening) and how many fingers is he holding up.  Entertaining as this is to me (and you), I am basically being told I look great and see you in six months, and I give him money to do that.  But I'm not great.  Friday I had a meeting with a local publisher about getting my book out when it is done.  Occasionally my brain would just shift into idle and I'd stop in the middle of a sentence.  The person I was speaking with was patient enough to wait it out, and we had a good talk.

It's like you are an old car, and you are taken to the mechanic, who looks around the front of the car and tells the owner its amazing the car is still going, but there's nothing he can do to make it any better except look at it.

Now on to Chester Alan Arthur.  Some of you may know that October 5 is Chester's birthday, and that each year at every presidential grave site a wreath is sent by the current occupant of 1600 Pennsylvania Avenue to note the birthday of one of his predecessors'.  Chester is one of Mr. Obama's predecessors, number 21 out of 44.  Normally the wreath is placed before the gravesite by Marines or another of the Armed Services, there some speechifying, and military (gun) salute, and lots of photographs for the media.  This year, however, due to the shutdown, no Marines, but one citizen was kind enough to bring  a classic firearm and salute the man who was Commander in Chief from 1881-85.

Normally, it looks like this:

The book I am working is about his younger years living in and around my home town so I'm learning more and more about the dude.

Info	Chester Arthur	Tom Martin
Date Born	Oct 5, 1819	Oct 9, 1956
Year of Death	1886	So far so good
Age at Death	57	I will be 57 on 10/9/2013
Chronic Illness	Bright’s Disease	MS
Career	Politician, Government official	Career Civil Servant
Mustache	Yes	Yes
Lived in Lansingburgh, NY?	Yes	Yes

I am doing my best to not notice that Chet died when he was 57.  But that happens. You get to an age and what's the first thing you turn to? Obituaries, right.  Look at the ages.  Got passed that one! Whew! Whoa, 55 for her, poor thing.  Twenty years after the Civil War ended, the men of Chet's time were mourning the passage of their comrades in arms.  Chet even visited Ulysses S. Grant when the General was finishing his memoirs up near Saratoga, and in the summer of 1885, attended his funeral.

Arthur always had a bad rap when he was in the White House that he was nothing but a hack who sold the furniture, and partied the time away. Nothing of the kind.  He held the office in deep respect and carried himself well, making sure civil service reform was done, and keeping the United States on the world stage.  His party opted not to nominate him in 1884, but he took it in good stead and retired to a law practice and his family.  He knew he was quite ill, and he died the following year.

Chester's wife died a few months before the 1880 election, so Chester carried on alone, with the daughter acting as White House hostess.  I am grateful to still have my wife, my First Lady, with me.

No one will fire muskets over my grave (unless the undertaker has made a serious miscalculation) but I do hope these stories and others coming soon would entertain.  I am grateful to you for taking the time, and Hello Russia.  More soon. 5000 plus hits!

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.
 
 

A tale of two stickies

Take a look at this picture:

On the left you see a very dilapidated golf club, a one iron of some ancient make probably used by the Morris clan (golf joke) and left in a garage sale.  The paint wasn't on there originally.  Just an added touch to being stuck in a garage by a guy who found that he could not play golf, but could hit a ball with a stick and follow it around.  I just didn't feel the need to pay some stranger for the use of their land to hit the little ball and follow it around privileges.

The club has a MS use though.  A few times a week I grab the club, stand in the grass, assume the position, and take a good swing.  If I remain standing, its a good day.  If I come down goofy or start to tumble, this is not a good day and I should be careful.  So while my one iron and its friends in the bag sitting in my garage may never see a golf course again, they do remind me of another day when I could freely play a sport I sucked at.

Now as for the stick in the middle of the photo, that's my new walking stick.  On Friday, Jackie and I went to the Southern Vermont Craft Fair in Manchester, Vermont.  This has been a tradition for many years and we'd stay at local B & Bs and go to the Craft Fair at the rolling lawns of Hildene, the former home of Robert Todd Lincoln and his family.  Highly recommended. Well, the bed and breakfasts closed.  And this year the Craft Fair moved to the other side of Manchester.  Ch-ch-ch-ch-changes, said Mr. Bowie.

Time to turn and face the strain.  The Craft Fair is in the midst of a field, a Vermont field, meaning rocks and little gullies and tiny holes, and if you have any problem with coordination, and I believe lots of MSers do, here was a challenge.  If I held my wife's hand I could move pretty well, going from booth to booth, but the moment she stopped to look at jewelry or whatever and I continued on my own, any quick turn or "excuse me" step out of the way might send me reeling into any booth anywhere, and I'd find myself staring at a piece of crockery that would only set me back three hundred bucks.  I'd mumble some excuse like "Astounding work. I must remind the Queen." and move along, find Jackie and head out.

We got a drink and hit the food tent where free samples were distributed.  My favorite was the rye whiskey (butterscotch in a paper shot cup).  When we left the food tent, we headed out to the tents off to themselves on the other side of the field.  There was the temporary abode of Debi Hitter, purveyor of custom made walking sticks (Eagle Scout sticks a specialty).  I ended up with one of the those sticks, and used it successfully to move around the craft with slightly more balance.  The stick also opens up new possibilities for career options:

1. Religious leader  (i.e. Moses) - see the staff in his right hand - by the way, the statue is in Washington Park in Albany NY, and this shot was taken during the Tulip Festival held each May.  Let's see, I might  ask my former employer to "let my people go", but they would, and then try and run the Department of Social Services with trained monkeys  (a lot easier to pass out bananas than support).  And where would I lead my people anyway? Across the street for lunch? The parking lot?
2. Robin Hood - there's that scene in every Robin Hood movie and parody from Mel Brooks to Daffy Duck where Robin and Little John parry with quarterstaffs, like this.  See maybe I could become the local Jedi Knight for the Luther Forest area.  There must be an opening somewhere.  I know my first enemy, the chipmunks in the back yard.  Not those:

but these:

I figure a swing or two with my new Jedi stick (I can make the noises) and those little buggers will head off into the Endor forests.

3. Join one of those German groups with the leiderhosen, and the sticks with the jingle bells on them, but I'd probably be asleep in my chair by the second song, so never mind.

I'll try to come up with other stick uses (open for suggestions).  Right now I'll use it on tough walking days.  It's better than a wheelchair.  It's a reminder that tough days may be ahead, but I can handle them in style.  The lady who made the stick is also interested in providing others to the MS group.

From the update pile: I've got appointments with both my new psychiatrist and neuro this month, and just need to step away from my old psych (who I noticed in the newspaper today didn't pay his taxes and got slapped by the Feds), and do my paperwork to transfer stuff. Best of luck to my old neuro as she moves to New Jersey.  I found that out through a meeting of the minds of the two people who showed up at the support group Thursday.  I could not have met a more gracious lady, and I hope the group works out.

As always, more to come....Thanks for reading... 750 hits.   I am honored.

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.

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.

"What?"

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."

Click.

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....