Old 05-22-2016, 08:45 AM #1 (permalink)
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Default What did you do?

Time to lighten it up a bit.

This is an opportunity for PALS and CALS to boast a bit. Share your work, hobby, and or personal accomplishments and history. This is not about finding out what caused your flavor of ALS, it is just a "get to know you" and how you "tick" section.
  • I sold and repaired land surveying equipment for nearly 30 years.
  • I assistant preached and taught in my church.
  • I do not have a college degree and have just one year of college.
  • I sculpt and paint.
  • I was a very high level triathlete and runner right up until ALS.
  • I like building things (most recently I am building our new kitchen cabinets).
  • I have a TON of ideas always running through my little brain.
  • I have started writing a book that I will probably never finish.
  • I have traveled a great deal on the Northern Atlantic by cruise ship with my wife and loved it.
  • My children, who do not live with me, 24, 19 and 17 are good kids who I love and want to help grow as long as I can.
  • I have two cats.
  • My wife is the center of my physical life.

OK your turn brag a bit tell us about who you or your loved one are.
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Old 05-22-2016, 10:05 AM #2 (permalink)
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Default Re: What did you do?

Pete, I am a CALS so I won't share what I used to do as this post is aimed at PALS but I also sculpt and paint, I would LOVE to see some of your work.
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Old 05-22-2016, 10:19 AM #3 (permalink)
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Default Re: What did you do?

CALS are invited to share as well, or maybe boast some about your PALS!
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Old 05-22-2016, 11:26 AM #4 (permalink)
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Default Re: What did you do?

Pete,
You sound like an interesting guy! I could use some new kitchen cabinets myself . What is your book about?

I will boast about my PALS. He served in the Army Reserves in the 80's, has a Master's Degree and was a federal employee who traveled extensively, visiting 47 states (only missing Oregon, Idaho and N. Dakota), did 2 tours in Iraq and was stationed for three years in Korea (we went with him for that and it was a terrific experience).

He ran 4 miles everyday for his entire adult life and continued running a bit for almost a year after he was diagnosed (he is bulbar onset). He always was health conscious and was rarely sick. He also has always been very driven and goal oriented and rarely sat still during the day. However, as a study in contrasts, he loves movies and can quote them randomly. It sometimes causes me some confusion because I am not always aware what is a movie quote and what he actually means.

He is extremely social and can come out of an elevator with a new best friend. He is a superb dad and his relationship with our two adult daughters (ages 24 and 22) is amazing. One of the things that we all value is a journal he kept with the girls. Because he traveled a lot when they were teens, he started a journal tradition with them. He would keep it for a few weeks and write in it and paste things like movie tickets or cartoons or postcards, whatever reminded him of them and then would send it to them. They kept it for few weeks and did the same thing. As a result we have an amazing record of their love for each other. It is especially treasured now after his diagnosis.

He is not on this forum although I think he would appreciate it and probably make a ton of friends. He has always been better at making social connections than I have.

Just a side note, Pete, he grew up in Lebanon, PA--not too far from you.
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Old 05-22-2016, 11:29 AM #5 (permalink)
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Default Re: What did you do?

Just want to say I think this thread is genius, Pete. I'll contribute later. Right now I want to read and digest what's already written here.
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Old 05-22-2016, 12:12 PM #6 (permalink)
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Default Re: What did you do?

CodyClan Her is the first chapter of the book I started it VERY unpolished;

Chapter 1
Yvette stood on the edge of the Hinmansville bridge blankly staring at the dark swirling water below her. The wind whipped her short blond hair across her thin pale face while frozen tears clung to her cold red cheeks. The glassey look of her face and her mouth held slackly open told me that she did not see the water below but stared right through it. Her thoughts were obviously elsewhere and her intentions where not the intentions that any catholic priest would approve of. The bridge was a 23 foot span of old rusted steel that connected the west side of the Oswego river to the east side, just north of Phoenix, NY. And while the jump itself would not kill her, the instant shock and pursuant hypothermia caused by the frigid February water in upstate New York would.
I watched quietly with no way of assisting her. I could not speak to her, pleed with her, negotiate with her, or physically pull her back from the edge, sometimes it's frustrating being invisible. Where I could not act, Hera did. Hera sauntered her way over to the edge of the bridge and rubbed against Yvette’s leg. She gracefully performed figure eights through Yvette's leg all while walking the tight rope of steel that was the edge of the bridge. She let out a small “meow” followed by a continuous “purrrrrrrrr” that broke Yvette out of her trance. She shifted her gaze back to the current tima nd place and down at the small white cat. She was half dazed by the interruption, and by the emotional turmoil that was running through her. She shook with fear and indecision but slowly she took a small step back from the edge of the bridge, followed by another, then bent down, and scooped Hera up in her arms.
As the wind continued to beat against her and thousands of small hard grains of snow pelted her, her shaking became a steady shiver and her shivering gave way to trembling. The tears once again began to flow, melting the suicidal determination, that had lead her to the edge of the bridge.
Hera continued to purr and rubbed the edges of her mouth against Yvette’s pointy chin. Yvette continued to stroke Hera's short white fur gently wiping the damp snow flakes from the cat's body. Again her feet began to slowly move, almost as though they were controlled by another unseen force, her thoughts continued to wander, and without being fully aware of it, she had soon walked back to her old Plymouth K car.
The car was old, it was a relic from the US oil crisis but it still ran and had a good heater. Once Yvette started the car heat began to pour out of the vents and Yvette's tears became a flood of sobbing. Speaking to know one but the cat she desperately asked “Why can't you be little Alex, where is he, why can't the police find him, what sense is my life without him, why is this happening to me, what did I do wrong?” The questions went on and on as she began weeping harder and harder all the time holding Hera close, perhaps squeezing her a little to hard.
I sat in the back seat and watched all of this, amazed by the intuitiveness of the cat. Hera and Yvette had never met before and still she took all of Yvette's tears, hugs and petting in stride, seemingly knowing that the woman needed to have someone to talk to and something to hold on to, even if it was just a cat. When Yvette would seem to start to slip back into the desperation of suicide that had brought her to the bridge, Hera would purr louder and rub against her more intently. It has been said that “cats know things”, in this case, I suppose it's true.
I was not able to directly interact with Yevette but just sat and watched the exchange. My name is Atal, and no, I am not a ghost – at least I don’t think I am. I come from the lost city of Atlantis. I know Atal from Atlantis, how corny, but if you knew my father it would make sense. I am just a shade under six feet tall and have a swimmer's body with round muscular shoulders and a lean but strong overall build. My hair is brown with silver streaks throughout giving it a coppery look. It is collar length in the back and has a messy look to it. I wear a closely trimmed beard that is more silver then brown. I have blue eyes, not the kind that creep people out, but the blue-grey variety that are similar to a hazy blue sky. I dress primarily in black, refusing to wear the garish clothes that signify my royalty.
Most people are under the impression that Atlantis sunk into the sea. Let me assure you that this is quite untrue. Oh, and we are not people who can breathe underwater, ride seahorses, or rule an undersea kingdom with a laser shooting trident (although my father does posses a trident). My father is the king of Atlantis, his name is Atlas (yes that Atlas). In 350 BC Atlantis disappeared from the face of the earth. Yes “disappeared”, we did not slip into the ocean, get destroyed by an underwater volcano or an other natural catastrophe. We simply became invisible. Not just invisible, but undetectable, unnoticed and unable to interact with the people all around us. Ships sail right through our island in the North Sea, and other then a light chill, they never know that there is an island filled with people that they have just passed through.
At one time Atlantis conquered nations, we were the smartest, fastest, strongest and the most advanced of all people. We where written of in all the literature and where the graetest of all kingdoms, even Plato wrote of our incredible deeds. Dad decided that the world was ours, that he metaphorically held its happenings, its future and its people upon his shoulders. He declared himself the true god of all things and the Atlantians as the chosen people. It was shortly after this that we “disappeared”.
There are many biblical stories of nations and people being cursed by God, Sodom and Gomorrah, the tower of Babel, the Walls of Jericho etc.. In our case we were not turned to salt, made to roam the world speaking different languages, or caused to crumble where we stood. Instead we were made invisible, unable to directly interact, be seen by, or to directly change or affect our environment or the people in it. We are not alone in this. There are many other cursed or lost civilizations, the Roanoke Colony, El Dorado, Arthur’s Camelot, the Seven Cities of Gold, Petra etc. All of them have had the same fate as Atlantis. I know this because we can see speak and interact with each other. The relationships are rarely good though, as we each see ourselves as gods, and despise the claims of the other. Two or more groups that believe themselves as superior to the others, will inevitably fight with one another to prove who is the true power.
My father and the vast majority of our people do not see our invisibility as a curse, but as a natural evolution of our superiority over the world. They claim that our divinity has been confirmed by our advanced state in which the humans are no longer aware of us. They point out that humans did not interact with Zeus and the other gods of Olympus, that Odin did not come down from Asgard to directly participate with humans and that the God of Issac and Jacob is not seen by humans but simply worshiped by them. So the majority of Atlantians ignore humans, they pretend that they don’t exist, that they are not worth our time, our concern or our help, that they are there simply to worship us.
Eventually Yvette was able to calm herself enough to put the little car in to drive and return to her small apartment above the pharmacy in the middle of downtown Phoenix. I followed her up the stairs to her apartment, the acrid aroma from stale beer, vomit and smoke made me feel a little nauseous as we climbed the steps to her studio apartment. Yvette was not what you would call a clean person, but her apartment was not filthy either. There were clothes piled in a corner, dishes needing to be washed in the sink, and mail was covering the table. But there was no food left out, or coatings of grease on the stove, and it was evident that at least weekly she made an effort to neaten things up.
In one end of the space was a small kitchen with a cheap electric stove, a white chipped steel sink and a small refrigerator that hummed loudly whenever the compressor turned on. In the middle of the room, against the long wall, was a day bed that served both as a couch and sleeping area with an old tube style TV on the opposite wall. In one back corner was the bathroom that consisted of a toilet, sink and standup shower. In the other corner was the door that we entered through. Next to the TV stood an old second hand crib. Yvette had painted it white with some blue touches in the carved inlays at the head and foot of the crib. It had cost her a week's salary too buy the second hand crib and the paint to make it special. She had also recovered the mattress and had a small quilt on the little bed that her mom had made for her prior to passing away from cancer.
As she had done everyday for the past three months, as soon as she opened the door, Yvette's eyes immediately went to the answering machine sitting on the kitchen counter. Tonight the red light blinked insistently, like the whirling of an ambulance beacon, informing her that she had a message. She had purchased the machine the day after Alex's third birthday, the day he had been kidnapped. The police had told her that they would contact her with any news, and because she was afraid of missing the messages, she had gone to the thrift store in Clay and purchased an old tape based unit that still worked. Because she was so upset with the kidnapping of Alex, it had taken her seven tries to record a greeting on the machine. In the end she had simply left a message in a trembling voice saying “this is Yvette, leave a message.”
When she saw the blinking red light she froze. This time it was not from the cold February air, but from fear. What if this message was news that the police had found Alex? Just minutes ago she was about to kill herself. What if they had found Alex and she was not here for him? What if it was bad news, could she bear finding out that he was dead? Can she bear not knowing? Slowly she bent down and set Hera on the floor. Although she had never before know the cat, she found that the comfort from it was something that she did not want to be without, and leaving her outside in the cold winter weather was not an option. As Yvette began walking the few steps across the room she immediately missed having the cat in her arms. She thought about returning to pick her up, but was hypnotized by the steady blinking of the red light. She paid no attention to the puddles of water mixed with road salt, road cinders and mud that she was leaving on the floor, she just slowly strode to the machine and stood above it waiting to gather her nerve enough to press the play button.
Hera sat down and looked up at me with her big green eyes, then proceeded to clean her front paws. I bent down and scratched her behind the ears, she stood up and allowed me to place my hand on her head and slowly stroke down her back; she arched in approval and purred softly. Wild animals, cats, and some dogs that are closest to their canine roots can see and interact with us. I am not sure why, but I enjoy their company.
I had found Hera when she was just a kitten. I was traveling to upstate NY and was on the outskirts of Baldwinsville. Hera, her six siblings and mother had been sleeping in the warm engine compartment of a van, when the owner started the van and began to drive away. Hera was the only survivor, she had a bloodied face, but was otherwise OK. I picked her up and inspected her, she immediately began purring and decided that I belonged to her. Cats are always in charge. We have been traveling together every since.
I left Hera and walked up behind Yvette just as she gained the nerve to press the play button to listen to the message. It was Sgt. Clapperton form the Phoenix Police department, asking Yvette to come to the police department between nine in the morning and five in the afternoon the next day, “and oh, I will be at lunch from twelve to one-ish”. Yvette stared at the machine, she mumbled in frustration, her voice rising as she spoke: “Is this good news, or bad news, what is the purpose of this message? Why do the police and doctors always leave such cryptic damn messages! Don’t they understand that this is my life they are playing with, this makes it impossible to function. Why cant they give me a little more to go on?” She was remembering all the messages she had gotten during the time when her mom was fighting cancer and how they never told you anything, just “we would like to see you” In the end it was never good news. Was this the same? Or was this just standard police protocol? What was going on? She immediately picked up the phone and called the station.
As Yvette suspected the station operator was useless. Sgt. Clapperton was gone for the night. He had left nearly four hours earlier and would not return until nine AM. When Yvette asked if they could tell her what he wanted to see her about, she was told that she would need to wait and speak with the Sargent. She hung up the phone exhausted and frustrated. She walked past the refrigerator , turned the TV on and went directly to her bed. She had not eaten more then a handful of cereal in the past couple of days, but had no appetite or strength to even contemplate making food. She laid down and closed her eyes, on the TV an ex CIA agent was threatening to come and take his kidnapped daughter out of the hands of a European crime syndicate, and did not think she would fall asleep. She wondered what the news was that the Sargent had for her, how she was going to get the time off from work to go to the station, and most of all if Alex was OK, was he alive, would she ever see him again? She slowly began to cry. Soon, the tears stopped and the exhaustion of the day took over as she fell asleep.
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Old 05-22-2016, 01:20 PM #7 (permalink)
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Default Re: What did you do?

My mom is my PALS, she actually is still working but is going to have to stop by the end of the summer, she is a court clerk in a family court. She was big into hiking and kayaking which she isn't able to do now but she still enjoys going out to the pub, watching Grey's Anatomy with my Gram and Uncle and hanging out with my daughter.

I don't have ALS but I have a lot of my own health issues, before I had them though I was in Emergency Medicine.
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Old 05-22-2016, 04:50 PM #8 (permalink)
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Default Re: What did you do?

Pete,
That's an awesome story--What happens next??? I am hooked!
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Old 05-22-2016, 05:22 PM #9 (permalink)
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I left upstate NY for Florida in 1978 at age 22. I was broke and had no education. I found a job and put myself through 7 years of college working full time and going to school full time (mostly.)

I was a full-time college professor for the past 26 years until I went out on disability.

I'm a certified public accountant, certified internal auditor, and certified management accountant

I worked in various positions in the financial service industry prior to becoming a college professor

I've published a half dozen textbooks and business simulations with major publishing companies (mostly during the 90s.)

I taught Sunday school for teens and really liked it.

I used to scuba dive and have been to many cool places to do this and other ocean activities

I was very active in all types of sports

I write poetry

I love reading the Bible and going to Sunday school

I have a very good, and somewhat warped, sense of humor. I love puns, jokes, and laughing

I've always owned dogs, even when I owned cats. I'm an animal lover!

I was a vegetarian for a few years but got too skinny. I was skinny (muscular) all my life until I started taking Remeron, then I packed on 30 pounds.

I never had children and I regret it. I love kids, especially tweens and teens.

I was an excellent cook and loved making dinners for friends. I created most of my own recipes, especially baked things like my cashew butter pie.

My favorite thing to do is floating in very warm water, especially the Gulf of Mexico in Summer.

I never really liked shopping, jewelry, and things most women like. My "thing" was electronics.

I don't like clutter of any kind.

I'm an ENFJ on the Myers Briggs. I love doing things for others and seeing people happy.

During the past year, I've become a TV junkie. I like a wide variety of shows and movies.

I have a nice camera and love taking pictures.

I've been told I'm an excellent listener and loyal friend. I love hearing about the details of peoples' lives.

I'm pretty much a liberal evangelical and you don't find many of us around.....love is the most important thing.

WOW, Pete. Good story. When do we get the next installment?
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Old 05-22-2016, 06:29 PM #10 (permalink)
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Default Re: What did you do?

Kim, what part of upstate NY are you from?
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Old 05-22-2016, 06:53 PM #11 (permalink)
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Kim, We grew up in Keeseville and Chateaugay.

Grew up in New York

Met Steve when I was 16 and he 26. We waited til I was legal before we dated.��

Knew I was going to marry him as soon as I met him.

Followed, watched and played sports unti Julien came along. Then we would watch football, basketball, and hockey night in Canada!

I got more Canadian channels than American when I was little. That was after we got the tv with tubes.

Work in a profession that only 10k ish have been certified in over the last 50 years. I am a cytotechnologist.

Steve was a journalist and teacher.

We lived in Virginia,Maryland, and Florida.....Florida being the longest.

We travelled, spent time enjoying nature, and loved each other deeply.
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Old 05-22-2016, 07:36 PM #12 (permalink)
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City: Lancaster
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Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
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Default Re: What did you do?

I am from Fulton/Oswego, NY about 45 minutes north of Syracuse.

Steph, I did not say so in my opening statement but you inspired this thread when in a different thread you mentioned a few things about Steve. I would love to hear more about him and about all our past care givers and their PALS.
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Old 05-22-2016, 07:41 PM #13 (permalink)
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City: The Beach
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City: The Beach
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Default Re: What did you do?

WOW, We were all so close. I'm from Port Henry (on Lake Champlain) about 30 miles from Lake Placid. Steph, Keeseville was a very short ride from Port Henry and we used to go there for pizza. I think the name was North Country Club and we went often on our way to Plattsburgh for a high school football game. Pete, been through Oswego a few times.
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Old 05-22-2016, 07:57 PM #14 (permalink)
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City: St Catharines
State: Ontario
Country: CA
Interest: I lost a loved one to ALS/MND.
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Default Re: What did you do?

Hello, Enjoyed the first chapter. How soon can we expect the second! Great work.
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Old 05-22-2016, 09:16 PM #15 (permalink)
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City: Queensbury
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Diagnosed: 04/2016
Interest: I am a family member of someone with ALS/MND.
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Default Re: What did you do?

Kim , Pete and Goose

I was born in Watertown NY, lived in Syracuse for awhile, mainly grew up in the Albany area, now I live near Lake George
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gooseberry (05-22-2016)
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