I was diagnosed with Primary Progressive MS in 2010. As an extra treat, in 2005, I was diagnosed as bipolar. As you may see my brain is not working as well as it should. My father suffered the same disease and he was the same age as I (54) when MS really kicked in. The stories here can tell you more. Welcome.
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.
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.
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!
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.
And I swear I will never take another three shot of the new pot pills I'm on now.
The pills (take one when you feel necessary) were just sitting there and I shall state that the dispenser guy did say up to a maximum of three. One of the neat parts about being bipolar/MS is that you forget things. Did I already take this pill? Is this my shirt, or yours or just a shirt on the new floor. You're the blonde I'm married to, right? (She continues to claim to be that individual, OK so with me! So far!)
Anyhow, it was Sunday and we were home and I'd taken two of the 9.7 THC pills and felt alright, like on a Wednesday afternoon when I was still working but stopping now and then to look a the tree outside my office. Sturdy and weak with giant wooden arms supporting small buds on just slightly larger sticks that pull away from the mother trunk ...
Yeah, it kind of started like, but ended up with this....
(OK, quick history lesson. I love baseball and that has been such a part of my life, that I mourn each days from November 1 - Feb 15 as wasted days of life. To celebrate this enthusiasm, my parents bought me a "Sports Illustrated dice baseball game." You rolled some dice and looked at a chart to see what the batter did. I only played a few games with it and next year it was replaced by a game called APBA baseball. No, I don't know what the initials mean, but I think it was what the founder of the game's own baseball card league. American Professional Baseball Association
So anyway you pick two teams, get your lineups ready, scoresheets, and beverage and then roll the two dice and see what happened to that leadoff batter. End of lesson).
Oh, this is an APBA card:
For me that night, I was playing a game between Boston and St. Louis. Boston completed a series with the Cincinnati Reds just earlier that afternoon, (Another quick lesson. The player cards come in manilla envelope that identify the team and league like this:
I hope you see the cover in upper right. The team is the Dodgers, but APBA figured if you'll fork over 40 bucks for the game and cards, why should they slow the cash flow by re-signing up with Major League Baseball to put authentic names to leagues, teams and in a few cases the players. OK, 'nuff said.)
As I sat there at the kitchen table around six PM Sunday, prepping for the Boston/cardinals when the table seem to bubble and the player cards of the Reds/Cardinals/Braves seemed to slip into the wrong envelope, moving away from my hand as if my selection of him for shortstop for the Cardinals was the wrong one (it was. That guy's a catcher). But the cards were still moving from hand to cover to lineups, and then the little brown things came around to help move the cards faster.
Decision time for moi. Am I actually asleep here? And this quick move to dream session normal? I had no sense of moving my body but my wife only sitting about 10 feet away just saw me looking at the cards, and not seeing the war raging between the Reds and Cardinals across our kitchen table. Baseball blood!
So that was my "high". The part of me that still thinks I am fine told me just to breathe and relax. And, much to my amazement, the pot images went away. I just sat there. Breathed. The third pill was fading out. The cards arrived at their appropriate sleeve and all was right.
And that was probably the first/ last time with Three-fer-me. The pills (THC) do help in the middle of the day when I am starting to take a nap, spazz out, and see if anyone noticed. Since it is only Jackie here it would be thumbs up or down by the Empress and a very concerned look at her husband. Nah, keep this one close. Just one every 8 -12 hrs.
I was too boring as a kid to know much about drugs, except Excedrine, Kaopectate, Pepto Bismol, pimple purging pills and the clear Avon products my mother bought me. I did see more of marijuana in college, and stayed away from it. Why? because I am letting someone/thing take over. And that is not allowed. By the way, all the pot brain girls needed a ride home...And I just happen to be sober and have the Mystery Matador:
I did OK. And with the help from the support crew, I will not prevail, but I'll make it as nasty as I can for MS, like put it into the back of that Matador and drive cross country with my family. Car parts will render themselves useless, unless you need air for a flat. That's why they made Stewart's shops for. And ice cream. Hey how bout this - Ice Cream Brain Freeze and the three pills? Then look at the baseball cards.
Monday I had settled in on the living room couch, TV remote in one hand, warm coffee cup in the other. Before me lay on the coffee table (a relic over 50 years) a small pile of books I can peruse while Masterpiece Theater goes through its beginning of thanking rich people for giving them money and encouraging them to take boat rides around Europe. I more wait for "the not rich" people "Thank you" because I actually write checks so I feel I can pay for a hair cut on, or half a one, for Daniel Day Lewis.
Time for "Wolf Hall" author Hilary Mantle's book on King Henry VIII, and his six (VI) wives, as seen through the eyes of Henry's friend and advisor Thomas Cromwell. The characters just seem to stand around and shiver, or die because they can no longer stand shivering. Cromwell just walks into rooms and looks at everyone there, and then goes another room and looks around and then he'll be mumbling "Save this queen at least!" A British documentary had the author become a small bit player but enough to see. Three nights, six wives, Boom! over, instead of six episodes, and two queens. It's a thought. I have them. Thoughts.
I have been approved for medical marijuana by the State and a doctor in Angola, NY. I was never sure if Angola was a small southern African Nation with a penchant for civil wars or a small, dying population also in need of food or the Rust Bucket remainder stretch of broken dreams near Buffalo. This led to the usual paper chase for a 60 year old trying to do paperwork and follow up, take a short turn down a street and just a million screams of the Hellroad will the be subject to your object! Finally, an answer arrived and it was, through the magical of the inter web, an ID Card, and knowledge that I now have to learn - what my assigned case number is with the FDA (FS3473838)
Here's a picture of one the cannabis pills, just mere seconds before being consumed by me.
I took the first one around 10:00 this morning, and like I said, at 6:25 pm 5/12/12. Still staying smooth, with minor bump or two, dizzy spells, and just keeping a watch over moods. All part of the standard MS world. The shoppe for Pot is located on a back street in Albany, not in what you'd call a nice great area, or maybe it was when Roosevelt was in the governor's chair (Frank or Ted).
The pills may help, they may not. But I have nothing sure but a certain stretch of moments that will go from now as you read this to when the moments permanently st-. So it allows me to toe test the 1960 or '70s other tradition while I more grooved (oh, please) with the music. But back then I could only smell what came from a dried dusty weak, dare I say weed? stick could produce maybe. Never tried it in any form to see if it worked, or if you had any reason you really needed thought you needed it. But I was never in the cool students groups and agreed to be a tripping victim on Thursday morning in front of science class so I could maybe not be harassed that or any day?
The info on Cervical Cancer is about (for me)t an old friend, but old is the wrong word, she was/ is one part of my life that had college, first job, and the fun times in between tragedies. We parted nearly 35 years ago, but I could keep an electronic eye on her through my job, though more from a database, nothing personal but that just to see if she was still around. This friend, who with me tagging along, went to concerts of rock stars across New England, Jersey and into Pennsylvania, is now stuck in a wheelchair as she fights a bizarre version of, oddly, (or maybe not) MS. Now, neither of us move well, or are not that good thinking. She was always right, and I agreed. And I helped her laugh, she said. Yeah, I could make her laugh. Wish I could now.
I'm just that guy from that PBS series Wolf Hall, Thomas (Martin) Cromwell. I just go to rooms and listen, maybe say something to someone, but mostly just be in rooms, listening, and waiting for something. I'll think of what that was at some point. Probably. Well, maybe.
"Free Marijuana for sick people. Can I help you get sump'n?"
Uh, yeah um I'm Tom Martin and I was told that I need to speak with you folks to -
"Yeah, yeah, Everybody's needy, my friend. Who set you up?"
That would be my Psychiatrist, Doctor U* and he -
"Wait, wait man. Your psychiatrist wants is Doctor Who?"
No, no. Not The Doctor. MY doctor is U******. He's local.
"He ain't got a Tardis, huh?"
Right. No timelords need apply. But I did hope to find out what I need to do get marijuana.
"Wait, how old are you?"
I'm, uhhhhh, 60 ish."
Still there, sir? I asked.
"Sorry, man. I can't believe a guy that old has now idea how to find weed, at some point. Now just for me to be sure, if you're 60, you must have gone through the 1970s, right. Plenty around as I recall, or rather I have been informed, if you get my meaning. You must have been in high school or college. There must have a buddy who could have set you up."
There was. I just never went to his setup. Look, I'm supposed to be interviewed for the program, so maybe we could...
"Guess what? This is the interview. So far you're old and confused and have been since Nixon was in town. No wonder Doctor Who wanted you prepped. Now next do you need instruction in assembling a doobie?
Look, I've got MS and whatever goes in the paper will fall right back in to the can. I'm using pills for it.
"Well, that ain't much fun. You see, you shoulda started years back, I'm telling you. You would had have an occupation or a hobby in the nursing home -
I live in a age 55 plus condo, please.
"Yeah? tell me how many pills they got you on? All your doctors."
I think its about 15 or so.
"Fifteen? Dude, I want some of that. I'm a missing a moment here."
"No, man you got a nice apartment that's 55 year old, and you've got yourself 15 scrips? Food? Cable? Heat? You're fine, fella. I want the names of your doctors."
So you can get some of what I'm on? Nope. You don't want it. But really you should have all the paperwork, anyway. I had it faxed over.
"Wait a minute. Lemme see Lemme see. Nope. Your name was what? Oh, yeah. Nope sorry. The doctors who gave you so many pills were too busy giving out even more happy pills to other sad songs like you."
Some people need them, sir.
"Sorry, man. Look you're gonna have to do this yourself, at least, to start. We are only as good as the information we have, and we got none on you except your name, you live in an old folks home and you're drugged up your whazoo. You gotta hit the streets, my man, and don't let the streets hit cha back. Little joke there. Get me stuff and then I can set you up with stuff."