"You have something in the ALS family"

Those are the worst words ever spoken to me in my life.  This was just about a year ago. The doctor was like, you don't have ALS, but you have something in the ALS family.  I knew ALS was bad, I knew it was called Lou Gehrig's disease  and I knew about the ice bucket challenge. but really, not much else. But I'm getting way ahead here...let's back up a few years ago.

It was probably almost 4 or 5 years ago that I noticed that I had a tingling in my left arm. Both my hands would get really cold and on occasion I'd wear gloves while watching tv.  My doctor took x-rays and blamed things on arthritis . About two or three years ago, I started to lose weight ..lost over 25 lbs right now. But the real indicator that something was amiss was when we moved from Branchburg, NJ to Voorhees NJ. While putting full moving boxes away I couldn't believe how heavy they were as I struggled to lift them over my head.

Then, my son Michael, who had not seen us for  quite a spell, saw me without a shirt on and was really concerned about the muscle loss and weight loss in my upper body.
Even before we moved, I knew I should see a neurologist, but figured I'd wait till the move here was complete. So I eventually  saw a neurologist locally, who turned out to be a pretty crappy doctor with the bedside manner of a mutant. But after misdiagnosing me, he did send me the pros at U of Penn in Philly, to where I'm still being cared for.
So that's when, after strange electrodes were attached to me and then to a laptop, those fateful words were uttered.
Officially, I have had whatever it is I have for 2 years. One doctor said more like five. Believe it or not, that's the good news. Proper ALS is alarmingly quick to disable it's victims and kill them in a few short years or less. My case so far is slow moving.
So what is ALS and what does it do? Here's the official word.

ALS is a disease of the parts of the nervous system that control voluntary muscle movement. In ALS, motor neurons (nerve cells that control muscle cells) are gradually lost. As these motor neurons are lost, the muscles they control become weak and then nonfunctional

But like it says, everyone's progression is different!
For me, besides the weight loss, and loss of  upper body arm strength and muscles, this disease has affected my chewing and swallowing of food. I choke very easily and have to thicken most liquids before I drink them. It's caused to me to stress out when I go out to eat with others as A, I don't want to  gag , or cough like a moron during the meal and B , I also have to make sure what
I order is easily chewed...think stuffed shells, fish, mashed potato....etc.
My energy level is low, I tire easily, have shaky hands and head at times, and I sometimes I just feel somewhat crappy and out of it . My voice is raspy and tires easily.  You all know I like to talk and eat!
The real stress for me is what will tomorrow be like?  There was no deterioration in my condition for almost a year, and then all  of a sudden about two weeks ago, I noticed I was having greater chewing/eating/swallowing difficulties. Don't think bread is in my future.  I also noticed a tad more weakness in my arms as I attempted to start our leaf-blower.
And that is the cause of the anxiety I feel .
But I didn't write this to gain your sympathy. I did have a selfish motive because I knew that just by  writing this blog, things wouldn't appear to be so bleak. And they don't.
I'll try to keep you updated. I certainly welcome your prayers!

House Concert!

A few years ago I met a singer songwriter duo by the name of Jeni & Billy at their first concert at a venue in West Virginia called The Purple Fiddle.   I fell in love with this duo  and we became very friendly. Of course, I wanted to see them perform again and when I asked them what their touring schedule looked like, Jeni asked me if I had ever heard of a house concert. I had not. She explained that the artist would perform right in your house in lieu of a formal venue. ! I got more details online from people who had done this before  and decided to have one.
I got my nephew to create a nice poster advertising the gig and started to invite people: family, friends, neighbors, co-workers, and anyone whom I thought might be remotely interested. I set admission at $10 and advised everyone that all proceeds would go to the artist...the $10 had to be a donation to avoid certain legalities.

My wife and I turned our basement into a mini concert hall and set up chairs for the expected 20+ attendees. We arranged  a nice spread of snacks, goodies, and beverages for our guests as well.
We put up a folding table in the den for Jeni and Billy to sell their merchandise during the intermission and after the concert.
Finally, the big day arrived. !
We fed Jeni & Billy before the gig  and it was about then that my head started to explode. Here at my kitchen table was a musical group whose CD I listened to in my car.

They were in my house, eating food we had prepared, and  we had their full attention!  The invited  guests started to arrive and eventually we got everyone seated in the cellar and Jeni & Billy put on an awesome concert!
It ranked with one of the greatest things I had ever been part of and I hoped we could have another one the following year. We actually had two more Jeni & Billy concerts in the years that followed and they were both just as awesome.

Sadly, Jeni & Billy have parted ways and are pursuing solo musical careers. But I never forget the magic they made in our house!

The Tree Trimming Scam

So the other day, a guy rings our doorbell, and says to my wife that he and his tree trimming company are "in the neighborhood" and they have noticed some of the 50+ trees on our property need trimming.
So lets stop there.,.first rule of this sort: whenever they say they are in the neighborhood,  you need to say no thanks.
But my wife agrees that the need is there, which it is. She comes and sees me in my home office as I was working from home that day, and instead of discouraging her, I say how much , etc, and she tells me what they say they will do for the low price of $400.00

Being the cheap guy I am, I say okay.
As the rest of this guy's crew arrive at our property, I notice they only have a couple of pickup trucks, no tree chipper or cherry picker truck. I also notice that they are piling up the branches on the curb. They tell my wife  that our township will pick them up. I agree as our town does provide this service.

About a half an hour later, there's a knock on our door and someone from our township from public works is now explaining to my wife and I that the town will not pick up tree debris a contractor has created! He inquires as to our tree trimmers company name and says they are the same outfit that has pulled this deception before. He says they know the township won't pick their debris, but by the time the homeowner realizes that, they are gone and now the homeowner must arrange for someone else to haul away the detritus for an extra fee.
So I'm elected to confront the tree guys on our property who are 99% done by now. I explain what the town has said and say that I'll pay you the $400.00, but not until you haul the piles of branches away.  I explain that your company knew the town would not pick up the piles all along.

The tree guy  nods his head in agreement, but says he must go check with his boss who is in one of the pickup trucks. I can hear them debate that the job was worth $700 and that the boss man is unhappy with my demands.
With that exchange, the guy who I spoke to gets in the truck without saying a word to me, and they all  drive off in silence.
I called another tree service that we had used before, with good results and  a couple of days later they haul away both piles for $400.00.
I have not heard a word back from the guys who did the tree trimming!

Letters From Camp

When I was about 12, my parents sent me to a Ukrainian camp in the Catskills. The camp was part of a resort called Soyuzivka, which is still operating to this day. It's really a pretty resort.

My parents were quite wise in not telling me that the camp was going to take three weeks out of my glorious summer. I had important things lined up, like following around my town's road department as they paved and repaired our streets.  Like my stint with helping collect the garbage in my town (see my blog post entitled I Was a Child Garbageman) I was obsessed with what was called the Streets and Sewers department in my hometown of Hillside. I would drive my bike to their central garage in the morning, and then depending on my mood, follow and watch one of the crews doing their thing for the whole day. Riding along with Fred , who drove the street sweeper seemed to me to be a great way to spend the whole day. 

I realized quickly that somehow I was not fitting in at camp with my fellow campers. They were all 13 or 14 years old, and here I was only 12! I was quickly shunned with a tag of being a little kid. My parents friends send their kid to the camp as well. Unlike me, he was able to convince his parents that the camp was pretty horrible, and after the first week, they picked him up and took him home.  My letters written to my parents from camp begging to be pardoned from my three week  incarceration were ignored.  Despite my verbal protests when my parents came to visit after the first week, I was informed by them that I was doomed to stay the entire three weeks.

The director of the camp was a female ,who we had to address as Mrs. Commandant. I'm translating it from the Ukrainian version we used. As her title implied, she was a cross between a female Adolph Hitler and Cruella Deville. She led us in military style marches around the resort and one day caught me badmouthing her in front of my fellow campers. Needless to say, I was not one of her favorites

Before eating any meal. we had to say in unison, "Mrs. Commandant, Smatchnoho", which very loosely translated means we trust we will find this meal to be delicious.

After the first week passed and I realized I was going to serve my three week camp sentence, things did improve slowly. I did make somewhat of a friend and really liked several of the male camp counselors who acted like nice older brothers to me. We did go on some nice scenic hikes and cooled off in the big pool.

Like Allen Sherman's classic song about his experiences at the fictional Camp Grenada, 

I had  to agree that things were getting bettah, so like Allan Sherman:  Mom and Dad, kindly disregard this lettah.

Uncle Floyd

Sometime in 1974 when I was still in college and television was a lot different, I ran across this tv show on Channel 68, called The Uncle Floyd Show. It kinda looked like a throwback to those kiddie shows I had watched when I was little kid, but it was quite apparent the cast was playing to an adult audience. All I know is I became hooked to this half hour show, which was on 5 nights a week . The times varied thru the years, but it was always on late afternoon or early evening.

Uncle Floyd, real name Floyd Vivino, was the star of the show. He used hand puppets, from his sidekick Oogie, pictured here, to several others, including really funny stick puppets like Mrs. Brillohead, Bones Boy and Sammy DeSoul, to other creatures made out of rubber like the incredibly funny Mr. Jones.
He played a plethora of characters as well using the non existent budget he had to gently satirize famous people and familiar stereotypes. Dear Blabby, Julia Stepchild, Brother Billy Bobby Booper, Flojo the TV Clown, Ricardo Romantico, Mr, Spooky, Cowboy Charlie The Dull Family, Joe Frankfutter, and more than 100 other characters were all created and played by Floyd. There were no scripts, no rehearsals, no sets, no budget, but plenty of LOL moments.
He surrounded himself with an equally demented cast who acted in the skits Floyd created, or starred in their own creations.  The show always ended with Floyd at the piano, belting out a tune that was written well before he was born.
Those of you who know me are aware that if I become a fan of something, I rarely do it halfway.
I subscribed to Uncle Floyd's gazette, which came out monthly. I started to attend personal appearances he made, from everywhere to local record shops to Macy's, the department store. The people at Macy's  miscalculated Floyd's audience and had him trying on clothes, which almost led to a near riot. The show held a convention at a Masonic Temple, which was awesome, as they had some of the now famous props used in the show. I got interviewed by a camera crew where I stated that Uncle Floyd could be compared to Ernie Kovacs. It aired on the Uncle Floyd Show.

I bought tee shirts, his 45 RPM records, his full album,bumper stickers (Don't Avoid-Watch Uncle Floyd) 8x10 glossies, the whole bit. I entered his TV contests and actually won free tickets to Wild West City, a western themed amusement park that was a sponsor of the show. Eventually Floyd started to know his very loyal fans by name, and I'm proud to say that he knew mine.

The penultimate Uncle Floyd moment though, was when he and the cast performed a series of live shows at The Bottom Line, a famous night club in New York City. I attended the show with my brother Dave who was also a big fan. It was sold out! Sitting right next to me was David Bowie, another big Uncle Floyd fan. I could have cared less about Bowie, because I was there to see The Uncle Floyd Show! To start of the show, they played the theme music of the show that preceded Floyd's on Channel 68.. a cartoon called Speed Racer. What followed was one of the greatest live events I've ever witnessed. Backed by his brother's band, Uncle
Floyd and his cast put on a show that was brilliantly funny ,familiar,  and frenetic. I've never laughed so much, nor enjoyed a performance more. It was truly the apex of his career in my mind. Some have said that it was at this point that Floyd began to understand what a fanatical and loving fan base he had. This was before the days of the internet or any social media which makes Floyd's success all the more impressive. I know I felt I was part of a special family and it was a great feeling.

The show did return to The Bottom Line for several more appearances, but they never lived up to the magic of the first show.

Eventually, Floyd's show  landed on NJ Public television. What was even cooler, was that the show was now taped in front of a live audience. Of course I was there with my wife and son for the first tapings. I even got to be the first contestant on a new segment called "Ridiculous But Real"  and successfully answered Floyd's  query and won a tee shirt!  (What's the only state in the union who's name is one syllable long? Answer: Maine!)
I had truly come full circle with an appearance on my favorite tv show.
The show did try a run at national syndication at one point around this time, but it was unsuccessful.  About 1998, the show could no longer be found on the airwaves.

I did see Uncle Floyd perform his standup comedy act, a few times, at a street fair, a nightclub, and at a record store in the years that followed, but without  Oogie and the rest of his cast, the shows were not as compelling. While there a few DVDs around with some bits from his old shows, Floyd has resisted putting out the old shows en mass.
And maybe it's better that way. You had to watch 5 nights a week, 52 weeks a year, just like a soap opera, to get all of the inside jokes and references. But man, it was worth it!

The Hit and Run

I was a big fan of the excellent tv show by the name of Breaking Bad. For those of you unfamiliar with the show's basic premise, a high school chemistry teacher starts making crystal meth to pay for his cancer treatments. Despite the increasing bad behavior of the teacher, one cannot help but to be drawn to the complex character that is Mr. White.

My tale today shows the real life consequences of those that buy and use this drug.
I left my house around 6:30 AM this day so I could arrive at my customer's location in the Philly area by 8AM. I got on Route 202 and settled into the right lane quickly. I noticed a car behind me who was evidently in a hurry and I saw that he was going to pass me on the left lane.  As he passed me, I was startled to see how close his car was to my car.

Next thing I know, this guy has sideswiped my car! I could tell the damage was not severe, but I did have some nasty creases and damage to the side of my car. I quickly pulled over to the shoulder , thinking he would do the same, once he realized he had hit me. But to my surprise, he never even slowed down, and continued on Route 202.

It took me a minute or so to realize I was dealing with a hit and run driver. I quickly pulled back out onto the highway in an attempt to follow him.

Simultaneously, I called 911 on my blue-tooth speakerphone and told the cops what had happened. I managed to get within viewing distance of the hit and run driver, but could not make out his license plate. He was driving pretty fast and at times, erratically, so I kept my distance. I proceeded to follow him for a few miles and the cops stayed on the phone with me, as I gave them the blow by blow on exactly where we were. I must say, it was kind of thrilling to be involved in a car chase.
We were coming up to an infamous Jersey traffic circle soon, and even great drivers can have difficulties navigating them. I was concerned how this guy was going to make it around the circle safely.
There was a traffic light about a quarter mile before the circle and just before it, I had lost sight of my nemesis. As I pulled up closer to the light, I saw that my guy had rammed his car into the back of a pickup truck that was stopped at the light. He wasn't going anywhere. I let the cops know what had just happened.  I pulled over to the shoulder  and watched as the driver of the hit and run vehicle calmly got out his car, while sipping a cup of coffee. As he meandered around, cop cars stated to arrive from several directions.
The cops began questioning the driver as I sat waiting in my car  for them to come to speak to me. When they did come over, they let  me know that the driver had no recollection of hitting me a few miles back. Luckily,  the paint from his car was all over the side of my car. The cops indicated to me that there was something not quite right with the driver , and after taking down my info, they let me go on my way.
I found out by reading the police report the next day, that the driver was under the influence  of crystal meth.
I am still thankful there were no injuries that day from either accident. 

The Elevator Accident

When I graduated college, I had absolutely no idea on what I wanted to do career wise. I had applied to several law schools, but did not get in any of them. So here it was, September, and I had to find a job. Turns out that Hahne and Co, an upscale department  store in  Newark, NJ, was looking for an executive management trainee in their warehouse. Management trainee was a code word for you're a college graduate who majored in something worthless, (mine was history) that can't find a job, and who was willing to work hard for a small salary.
The actual job I landed was as a warehouse supervisor, managing about 30 old ladies who checked in and price ticketed  all of the apparel that was to be sold in the 5 stores Hahne's operated in New Jersey, including the flagship location in Newark.  The warehouse was located on the top floor of the store. Trucks with the store merchandise would deliver on the street level, or "the walk" as it was known, and then the merchandise would be delivered up to the fourth floor where I worked, via 1 of the 2 giant freight elevators.
My area would check in the apparel deliveries, make price tickets, ticket the merchandise, then separate the orders that were destined for each of the five stores and then from there they would be transferred out daily in the merchandise  "cages" via a daily truck run.

The other side of the warehouse did the same with most of the non apparel merchandise that the store sold.
Working at Hahne's was like being in the cast of a soap opera, with a heavy dose of daily human drama. Working in retail is not for the faint of heart, as it's a very dynamic, stressful business, with a lot of pressure and daily, critical deadlines to meet.
 One particular day though  will always stick in my mind.
My immediate boss was a guy named Art who had limitless energy as he practically ran from one side of the warehouse to the other on a daily basis. He was really a nice guy who took me under his wing and taught me many lessons on how to handle people.
On this fateful day, Art was rushing around as usual and for some reason was going down to "the walk" and was going to use the old freight elevator, which was side by side with the "new " elevator. This old elevator was operated by hand, as you had to pull these giant thick  cables to get the elevator to start moving. What happened next was never fully explained, but just as Art was getting on the elevator,  Eddie, the guy who was riding down with Art and who was controlling the elevator, pulled the cable to get it moving just as Art was in the process of getting on it. As a result, Art lost his balance and his body fell into the small space between  the elevator car and the elevator shaft. He was literally pressed and scraped between the small space between the  cement elevator shaft and the body of the elevator.
I was doing my usual stuff on the other side of the warehouse when someone came running over and said Mr. H was injured in an elevator accident. I rushed over to the other side of the warehouse, made my way down to to walk area on the street, where an there was already a chaotic scene that included an ambulance ,fire rescue trucks, and the police. I looked in the elevator which was mangled by the rescue guys in the process of  extricating Art out of it.(The outside of the elevator and "the walk" are  shown in the photo below. The door that has the pink heart on it is THE elevator)


Next thing I knew, I was in the ambulance with my boss, flying down to the hospital that was close by. Art looked like he had been through a war, with giant bandages on the wounds he suffered on his torso and extremities.He was strapped into a gurney, talking like he was a crazy person, and obviously suffering from shock. He was in critical condition. He babbled something to me about not telling his wife Peggy right away about his condition.
I was flipping out, ready to cry , and totally devastated. We made it quickly to the hospital and the rest of that day's experience is a blur. I do remember walking back to Hahne's after they stabilized Art and completing the rest of my day in a trance.

I visited Art many times in the hospital after that day and eventually he did return to work, with a pronounced limp and some other visible damage.
Twenty or so years later, there was a human interest article about  my old boss in our local paper.  It did not mention that fateful day and Art's near fatal elevator accident.