Monday, February 19, 2018

Edna

Some of us who attended KJHS/LHS in the 60's and 70's may have Edna Van Duzee as their music teacher.



Edna


Though she was long retired from school teacher, she was very active in music and politics well into her 90's in The Village of Round Lake.  Edna passed in 2017.

Now I told you that to show you this.  I was strolling around the Clifton Park, NY Salvation Army store last week. Yes, that's how busy I am.  But I normally stop by once a month looking for the odd baseball caps, t-shirts, and hoodies.  This time, though, I was drawn toward three boxes near the eight track cassettes part of the shop.

Flipping through the stax  of wax there were classical:



And classical:

And classical:


There were many other classical albums in the boxes.   No matter the condition of the album on the outside, the LP within was pristine.  Even if the were Mitch Miller and 100 Strings (kids, ask your grandparents) were in most of the other albums, I couldn't resist these two baby boomer memories:



That's right, K-tel Records brings you the BEST of pop music of the early 1970s, plus a number of bands you have never heard of and never will. That's OK because all the songs are less than two minutes to make sure you can get part of a couple of bars of the Intruders!  Get it now!

BUT WAIT !   THERE'S MORE!


Yes, the heart of pop music for early 1966, and then a TV show, then two post divorce TV  shows, then Sonny went to Congress and skied in to a tree.  Cher lives on in as little clothing as possible.  When I pulled out the album, there seemed to be evidence of more use than some of the classical records (smudges, scratches, that little fast/ slow  showing the LP has been in the sun too long.  But someone must have liked it.

The most important part of this not the music selections, but here was part of one of teachers lives. Also there's recorded organ music from almost a century past.  One of the greatest feats about Edna was her preservation of the magnificent Ferris Tracker organ in the Round Lake Auditorium.  It's still there, and there are programs to bring the Ferris Tracker back to life again.

Edna would have liked that.


Saturday, February 10, 2018

Tools of the trade

"Symptoms of MS," said Isaac Newton (never, but go with it) "which cause an actual harm to the human being suffering within, but the being in distress can fight back in an equal and opposite manner."

Let the battle begin!

But there are no guns, no cannons, tanks, bombs, or nukes.   Yet the losses pile up for the one enduring the fury of the onslaught.  We must change tactics, giving way where we must but still holding ground where we can.

For instance,  this.....



The wall brace.  This recently installed item is a suction grabber handle to help prevent falls and possible injury, which is nice. However you must fall around or near for the sucker to do its job, unless you shower and and keep one hand on the sucker at all times, switching from hand to hand to get clean.  I truly propose that these be sold by the gross to MS folks so that the rest of the bathroom can be as safe.  Warning: This handle only sticks to ceramic and pre-fited showers/bath fixtures.  If you fall down in the hallway between the bath and another room, that's on you.  Or take out a loan, have your house completely done over in ceramic tiles and/or whatever they use to make the new bathtubs with and get as much as you can. Stick those holder uppers about one foot apart all over your home You've got MS, you're gonna fall over sometime. Why not be prepared?

Here's the next, the big person's bib. I thought this would be a little further down the lifetime, maybe close to nursing home time.  We went shopping and found this lovely two way version.




Guest Bib (hard to find a shirt for this)

Just us at home version (note the crumbs)


At first I rebelled as any regular guy around 60 years of age would, remove my napkin from my shirt top where it had been tucked in on the assumption that food I couldn't keep from going down my gullet would end up on this 6 inch paper towel, and stormed off deeply wounded.  I would also have a  huff prepared to leave in.  But at home, its the bib.  Could I get like a Star Trek or Star Wars one?  Or a Trump one so that everything not in my mouth falls on him.  It's a small rebellion, I know.  I'm just doing my part.  I do recommend that you use this Mega only at home and trips using a drive thru for consumables.  I would not want to ruin my driver's front or back seat with taco sauce or the exploding  burger from a triple MacDonald's sized BigMac.

There's much research on what MS can do to your teeth.  Check out: https://www.everydayhealth.com/multiple-sclerosis/living-with/how-ms-affect-oral-health/
and see how the insidious MonSter can reek havoc with your mouth and teeth.  But there's a good amount of ways to counter what its doing such as brushing, flossing, and get a good oral rinse twice a day.  I also recommend having diet or low sugar tactics with you all the time, which in Disney World is a must unless you want to try and find a water cooler and waste time the you could see President Trump at the House of Presidents ( and Casino).

Here's a fun thing.  Try your patience using a water pick...





The thing looks like its from a 1960's sci fi show.  Water Pick the 23rd reigning over its part of the bathroom sink, daring you to grab it, and squirt your mouth clean, assuming it gets close enough to your opened mouth before ejaculating.  Then clean up.  Return the mighty Pick to its holder, where it will remain gloating.  Change your shirt.  And you're off!

Saturday, December 2, 2017

What you think about about when stuck on the toilet.

I have been away from you for three months.  Here is what has occurred:

1. I still have PPMS.  Damn.

2. I have a heart problem.  Guys my age(61) have an heart rate of usually 80-136 beats per minute.  My heart rate is about 46 bpm. A sleeping cat has a bpm of 120. I'm at 46. That means for 15 seconds of each minute I am the hobbling deceased (doesn't that sound classier than Walking Dead?)

3. I figured that I must be a prime candidate for Hobbling Deceased as:

  • I have many different walks. I can do the Frankenstein lurch, the dazzling pirouette when stepping away from an object like a chair, table, wife or most inanimate objects (my wife is not an inanimate object - unless The Young and the Restless is on).  I can also fall over on cue.
  • My mouth doesn't always form the words right so it may seem what I say is a mumbling that could join a group of walkers and hang with them for 15 seconds.  There are enough early kills on the two shows, Walking Dead and Fear the Walking Dead, that I could fit in quick enough (for a zombie)to get a Michonne autograph, and then hobble down the road, mumbling.
  • I do have some concerns about how they are dressed.   I'm more of a t-shirt and jeans guy, and cleaned both well.  The blood and guts things on the Walkers can be special effects added later, so I might squeeze by, especially near Michonne.  Quick note: I stopped watching Walking Dead years ago - tired of the blood and gore of a ridiculous premise TV show, when I finally told myself that I was watching the show only to watch the special effects explained on the Talking Dead.  Once a nerd...
4. My heart medicine was put in place 20 or more years due to my high blood pressure at that time.  The blood pressure, I figure, was from my job at a DSS office, and of course, family, primarily my mother (who blessed me with her bipolar disorder as well) and the struggles of processing 5 family deaths within two years.  Other people have much worse, I know (re: DSS work).  I retired from my job seven years ago, there're few relatives left standing and no real attachment among us.  My blood pressure is fine, except, of course, the slowing of my heart from taking pills for a condition that faded years ago.  So I have a new cardiologist, and we're trying to do what we can do.

5. All right, here's why the title of this piece is what it is..   I mean, my fellow MSers, the worst thing about this rigamarole,  at least for me, is toilet time.  Unless I have a warning that what is about to happen is going to happen BIG and I better be prepared, I just do a quick visit with usually a rapid notification of disposal of waste and I'm out of there.  However, one Thursday morning in November, I was notified of a required visit to the bathroom, but it appeared to a quick one, and so I just sat (that's one thing I've learned with MS and bathrooms - no matter what you may think, guys, sit - ladies, you are as always prepared).  So I stopped in, and sat...

And I was there for two and a half freakin' hours!  It never stopped! Anytime I tried to get up, it would start again!  I didn't dare move, but no reading material or iPod within reach made for a very disappointing morning.

Cleanup of both myself and the bathroom filled in more time.  An image of the toilet seat had embedded on my butt! Really, it was. And now I could understand the people's fear on the two Dead shows.  It's going to barge into your world and terrify you so much that you never want to see it again.  But it...never...stops...coming, there's always more  and more


So, as we are tolled by all the MS Hucksters, until there's a cure, there's simply
This is what's inside....



and this is what's outside.
And they will never stop coming after you. Maybe I'll start watching Walking Dead again, and root for the zombies.  My kind of peopleHappy Holidays.

Wait, wait!  Here's another bit - There's the investment of your time.  When you get the official notice from your digestive track that you may be seated  for a while, you can always grab a book, your cellphone,  or other amusements and distract yourself.  So you seat yourself comfy, grab the latest Stephen King story, turning to page 7289, and by the time you are on page 7296 realize that nothing has happened at all, for you, anyway.  Steve might have killed off most of Maine in those seven pages, but the action you thought was to happen for you (or to you) doesn't occur, except perhaps a trickle and a toot.  That's our Nagan MS. He's swung his baseball bat with the upgrade barbed wire wrapped around the business end of the wood.  Always that service with a ... Damn, gotta go! Maybe

Friday, September 1, 2017

But don't you step on my Hush Puppies....

On Monday of this week Jackie and I were leaving our local library when I could hear the light clack clack of those plastic tips on my shoe laces (aglets - yes, I looked it up) dancing around the brick sidewalk.

"Oh, my, I must tie my shoe." I said.  We stopped and got out of people traffic stream.

I looked down at the shoe:

I had absolutely no idea how to it. Nothing came into my head.

It was like I was 8 years old again.  I came to shoe tie time a few years after most of my schoolmates.  I still cringe when I remember a gym class where we had to toss shoes around so they (the shoes) were scattered around the gym floor and we (students) had to find our pair, put said pair of shoes on, tie them, and reach a finish ASAP.  I could handle the take off and throw, knowing what what was to come. "Go!"said the gym coach. Off. Toss. Find. Put on, and shuffle to the finish line.  I don't remember who it was walking next to me, but he said, "Your shoes." I asked him to do it, begged him to tie them for me.  Our class was a good size and the few seconds of not being with any part of the group would not be missed.  He kindly did it, but that scene of dread has stayed in my mind since.  Another thing I could not do right.  I told my parents upon my arrival home that afternoon, tried to negotiate a switch to Hush Puppies, my preference, but was given one of my father's work shoes to figure it out.  I could not go to bed until I did. So I sat at the kitchen and did what I could  do. Of course, I was shown the general hints:  


Bunny runs in the tree hole. And up and.. lost the bunny. Try again

Eventually, I got the idea, and completed the task, though I still like Hush Puppies.

So here I was with my wife tying my shoes while grade school kids ran by.  Full circle.

That night though, I did not go to bed until I could move my fingers in their now limited ability until I had those aglets clicking in the right place.  I could tie my shoes again.

Still I am at the age where a loud shirt, barely not waist busting shorts, long black socks, and a pair of these:

There's not a gym coach anywhere who would challenge me. I got my Puppies on, bud, and no matter how many other abilities come and go, I still got them Puppies.

So, MS, what else you got?


Wednesday, July 26, 2017

PPMS, bipolar2, PTSD and Pneumonia - The Four Horsemen of the summer Apocalypse

Biblically referred to in Revelations, at the end of John's prophecy (John of Patmos, at 6:1-8. ) These hell horses bring  famine, war, pestilence and death, to earth and yes, that same zany gang that started WW2 has zip to do with it. The Deity has washed his/her's/their's possible hands of the planet and gone off to this part of galaxy




No it was not these four horses... and I can still feel the clip clop in my head, but maybe's that's another thing.




No for a 60 year old such as your host, all that I needed was:


Meet Chuck the horse.  Now if you've been here before, you know that a series of maladies has slowed my retirement enjoyment over the past eight years, and how I've been slowed in my working/writing (with some good help).  The thing is, its like another spoonful of green lima means, has been tossed on top of your favorite food and just when you barely swallow that set, more lima means are dumped.  And you know that, that wonderful feeling of nearing he dessert has been crushed.  Lima beans are in my pudding.

See when you've got MS, you're always sleepy through the morning, drowsy in the PM, and stumbling back into bed, unsure at what points of the day you missed because you slept through them and then can't fall asleep.  And you forgot to eat again.

So take that and add pneumonia (the second time in my life [ I'm better] and suddenly emergency rooms and after a lot questions, EKGs, blood samples.  I was hooked up to an I-V for hours as the truly nice staff did all they could, though I wished the TV would have worked.  Home at 4:30 AM.  Collapse in our brand new super duper bed. And blessed accomplishment I actually fell asleep for nearly a hour before falling out of our new bed.  You need to have mountain shoes to climb in and a prepared parachute to get down safe.  The bed is one of those raise head/lift feet things, old couple bed.  It took me a few nights of stubbed toes past the newly metal end piece.  In all our years, Jackie and have had the same mattress, nor headboard, nor footboard.  We were always going to do that, that is, but cash and stuff (lots of stuff) got in our way.

To relieve the sound of snoring that disturbs my bride's dreams of shopping at Kohl's, I used a number of pillows to prop my head and get into the oddest position necessary to relax and hope that Jackie moved  closer me, Mr. Warmth (now that Rickles' is gone, the title is up for grabs) and I find I'm driven to the very edge of the bed, below me a block of deep black nothingness disguised as a rug.  But my terror at being so far not shoved me screaming to the floor.

So I sit here, coughing and droopy - the latter being the norm. One of the horses went home, though did take his sashaying horse.  "See you on the deathbed, pal!" he said chortling as he turned to fire and disappeared.

"Don't worry," PTSD horse said. "We're still here.  Blow your nose, but don't put the tissue on the bed cover!  Think of your house! What, are you, someone who can........"

"He's asleep, PT." said the MS horse.  "Enough for tonight.  See, Pneumonia, oh....He's gone.  More cholera, I guess, someplace else.  Call it a night, or by the way there's a veterans hospital just down the road."

PT bowed his head.  "In all fairness, sir, a lot of my brother's ponies have been there, terrifying the families by making TV soldiers even worse than he ever had it. Good riders, sir."

And with that the MS horse in its ghostly form relaxed, and began to fade.  

"and another day ends," he whispered.  He went to  his favorite dream, the one driving a Cadillac, top off in the farm grass, his hair flying behind. This is living, he knew and he hoped he'd get to do  the part where the world is but hay, water (for all needs), apples, and that nice palomino named....Zika. Wait, Chuck's on duty tomorrow. Great. Can't wait for those stories. Good ole Chuck. U.P. Chuck.


Monday, July 3, 2017

We-yrr, We-yrr, We-yrr.....I hope.

I always believe what's on Google.  Stay with me here.

I had an appointment with a cardiologist today, tests required.  We arrived before the office actually opened and found that even the elevator wasn't even awake, so we climbed up three flights of stairs (Energy level 60%).  After some pounding upon the office door, the one living person in the building responded to our fists and cracked the door open slightly and said "You're early!" and I was waiting for her to put up a sign on the door and say "Go Away and Come Back Tomorrow!" (Oz reference).

But we were allowed in eventually and I was summoned.  Lay down. Sticky stuff placed on my hairy chest, wires to a machine.



And, yes, I was wearing my toupee, OK? The technician gave a me a pity shave.  Actually he did the shave and arranged it on my head

Measured shot of goo into my arm, go sit down in reception.  I could not eat or drink anything (except water - Perrier is my choice) so I sat and read.  Jackie drove us to the office so the moment I had gone into the tombs, off she went to Starbucks, and so I sat and then was summoned back to the room, and there talked to the cardiologist.

The average resting heart rate (HRrest) for a 60 year old is 72 beats per minute. 60 year old males average heart rates of 70 bpm while females average slightly higher at 73 bpm2. The normal resting heart rate range for all adults and children 10 and over is between 60 and 100 beats per minute.  90% of 60 year olds resting pulses fall within the range of 54 to 91 bpm. In general, an adult's resting heart rate will be lower for those in better athletic condition.  This information kindly grabbed from Healthly.io.

My heart beat per minute is 49.  With some body movement I can get the beat to 55/56.  This also means that I should be running for marathons for Nigeria, as that' s more in their territory.  Only 5% of the men on the planet have such a heart beat rate and I am not sure if all of them are runners for or from Nigeria.  Me? Run? 

And heres a cool note.  University studies (on the web) show that only horses, elephants, and large whales have a slower heart rate than me.  Hamsters run close, though, at 55.

So we made a slight change in my prescription.  Change one pill to 1/2 a day so it becomes  


to bread crumbs
From a pill that was 6/16 of an inch

I am in the market for any ginsu knives.  You see how tiny those pills are?

Jackie wants the knives so she can (ever so slightly) touch the point of a knife to my forehead to see if I'm asleep or dead. Just a loving tap, I hope.

The title of this piece comes from the electrocardiograph sound of the heart beating. If you ever take one or even listen to a baby in the womb, that's the sound I hear.   

Google told me about the ability to see what the heart beat means.  I'm waiting to hear that We-yrr, We-yrr, We-yrr..Dogs' heart beats are three times faster than mine.  Maybe I should lay down in the yard and pant.

Energy --maybe 1%.   I'm going to bed.  Curl up on the couch, or maybe under the desk.  More updates from the floor of my den soon!


Wednesday, June 28, 2017

The three little pills, and the four days of energy depletion.

For the last few weeks, I've been laying low getting used to the warmer weather, and the continuous adjustments of my scripts to find some fit, and yes including the little Gang Green pictured here.  After the three pot pills in one day fiasco, I used them on an as needed basis.  So far, it's been fairly no need as other medications are working fairly well, the only problem is getting the medications approved and to me and for me to remember to take them.

I am also now required by MS to take a nap daily whether I am prepared for it or not.  I'll be reading and then my wife calls me or I drop the book in my hand(s) and open my eyes in surprise that 45 minutes has been sucked away. I'm okay most of the day, morning after breakfast, Deathwish coffee, and review of the news.  After the 6:00 PM news, I'm good for the night.  But on days where I don't have water therapy (like now) the mid afternoon plays a sleepy enticement.  However if I'm involved, like today doing some writing away from the house, I'm fine.  When I was working at my last job, I'd just get up from my desk, where droopy Tom would be sitting looking at data sheets, and I would go get an espresso or latte.  I got fatter but I stayed awake.



A lot of this was brought back last week when I opened the newspaper and did my usual read the comics first and then through rest of the paper, always checking in the obituaries (this is an obligation for AARP members) to see if people you knew long ago like high school and stuff.  That Wednesday I saw a picture, of a gentleman I had known as well as anyone can with walls we put around ourselves at our jobs or life.

My boss had died, and here was his obituary.  His name was/is Ed. His picture had him smiling with a Boston Red Sox cap upon his brow. I read it through a few times to re-acquiant myself with him, and I could see him semi-running to meetings upon meetings, myself and few other of the minions keeping with him as best we could.

Keeping up with him was twice as tough because I also had worked for his wife who ran another division in the same department. I began at the county department of social services in 1986 and in 1994 I was told by Ed that I had been "traded" to his wife's division and then in 2001 was sent back to Ed's part.  What has amazed me even more was I running through civil service titles so that from 1986 to 1994 I went from a team supervisor to the assistant director of Medicaid.  I hope I did OK.
Energy level 20%

Funeral time.  There wasn't any big fuss, but it was wonderful and sad.  I could remember most of their names I'd worked with and hunted down the dear ones that I really wanted/needed to see again.  Some looked exactly the same, others it took a while to remove ten years from others and see the nice guy or gal who worked over there with What's His Name.  My MS was mentioned by many and with  kindness. Energy level up 10%

So we got through the evening.  A number of people noticed my tie which was covered with the Red Sox logos, and Ed's wife was very grateful I did and we walked her out at the end of the service, and I headed to my writing class.  Certain workers told me that the tie was a suckup to Ed.  Then why did I keep it long after Ed retired? I dunno, but just in case (like a 2013 World Series win)But I will never wear it again.  Energy level down 40% with a plus 30% for seeing old friends.

The next day was my wife's birthday.  We got off on an unusual start (that will happen more) as Jackie wanted to leave ASAP, and I try but finding dawdling and getting all I need to take a little trip. Jackie was a little annoyed (OK, OK, a lot) when I finally arrived. She was in such a tirade that she pulled out on our main street and never saw the massive SUV heading right for us. I yelled at Jackie. She cleared the car, and we went on.  And then just missed being hit by a second large SUV around two minutes. I yelled again. Jackie quickly adjusted She was flustered plus infinity, even asking her MS husband if he (me) wanted to drive instead. I declined.  Otherwise, we moved off into our activities for the day.    Energy level down 20 % as we reanalyzed the situation again and again, but a nice dinner.

Saturday was an open day so we did different things. I will give it a zero change.
However while reading I dozed off twice sitting on our way too comfy couch.

Sunday was a 5:30 AM wake up call for a trip to Citifield to see the Mets play (b.  Fell asleep on the way there and the way back.  I think the 5:30 AM wake up did that one.  The Mets won the game, not that the victory made me or the Mets any better, but I did have my first mint julep. Gee, potpies and mint juleps, bourbon and vodka.  I always wonder how I could be the grumpy private eye novelist
guzzling cheap beer and hitting the keys, like Mickey Spillane..

Energy level 20% down.

Yesterday I was watching a ball game and was suddenly pinched by Jackie and given my dinner.  I had fallen asleep unbeknownst to me while staring at the tube (because I would have known if I was awake, ya see).  No offense, TV shows.

So today, at 5:50 EDT Wednesday June 28 I am still awake. No naps.  Just busy and trying to stay that way.

One thing I've found, though, if you ever take a relaxing sit and are thinking away, carful, because MS will grab it and off you go, into sleep time, until SPASM! You wake up suddenly, and if you're lucky no one's around to blink wondering eyes at you.  If there are folks, a quick coughing fit might fill the bill.

"Sorry, just a small vile attack of this disease that has not treatment or cure.  Would there be any bourbon around.

Energy level about 85% today.  It's a lovely day.

Keep swimming, everyone. Just keep swimming.