ALS: Tell your story


ALS.
In Laymans Terms
Lou Gehrig's disease is a disorder that's also called amyotrophic lateral sclerosis (say: ah-my-uh-TRO-fik LA-tuh-rul skluh-RO-sis), or ALS. The official name comes from these Greek words:
  • "a" for without
  • "myo" for muscle
  • "trophic" for nourishment
  • "lateral" for side (of the spinal cord)
  • "sclerosis" for hardening or scarring
So, amyotrophic means that the muscles have lost their nourishment. When this happens, they become smaller and weaker.Lateral means that the disease affects the sides of the spinal cord, where the nerves that nourish the muscles are located; andsclerosis means that the diseased part of the spinal cord develops hardened or scarred tissue in place of healthy nerves.
ALS is often called Lou Gehrig's disease after Lou Gehrig, a hall-of-fame baseball player for the New York Yankees who was diagnosed with ALS in the 1930s. People in England and Australia call ALS motor neurone disease (MND). The French refer to it as maladie de Charcot, after the French doctor Jean-Martin Charcot, who first wrote about ALS in 1869.


Lou Gehrig's disease damages motor neurons in the brain and spinal cord. Motor neurons are nerve cells that control muscle movement. Upper motor neurons send messages from the brain to the spinal cord, and lower motor neurons send messages from the spinal cord to the muscles. Motor neurons are an important part of the body's neuromuscular system.
The neuromuscular system enables our bodies to move and is made up of the brain, many nerves, and muscles. Things that we do every day — like breathing, walking, running, lifting stuff, and even reaching for a glass of water — are all controlled by the neuromuscular system.
Here's how the neuromuscular system works: If you want to make a fist, your brain first sends signals through upper motor neurons to the area in your spinal cord that controls your hand muscles. Then lower motor neurons in your spinal cord signal the muscles in your hand to move and make a fist.
Over time, Lou Gehrig's disease causes these motor neurons in the brain and spinal cord to shrink and disappear, so that the muscles no longer receive signals to move. As a result, the muscles become smaller and weaker. Gradually the body becomes paralyzed, which means that the muscles no longer work.
However, someone with ALS, even at an advanced stage, can still see, hear, smell, and feel touch. The nerves that carry feelings of hot, cold, pain, pressure, or even being tickled, are not affected by Lou Gehrig's disease. In some people with ALS, the parts of the brain that allow us to think, remember, and learn also are affected by the disease.

Me and My Dad. Mothers Day 2007


Summer of 2008

BJ, Ayden and I lived in another town, about an hour from my mom and dad. We had just celebrated Aydens 2nd birthday. BJ and I were fixing to celebrate our first wedding anniversary in Sept. My father had finally found something he loved as much as the USMC, The Bunker Pawn and Gun. He opened up shop Dec 2005 and absolutely loved what he did. Life was good. I talked to my mom just about everyday but only talked to my dad once a week maybe but our relationship was getting stronger by the day. He was in the military, Marines to be exact (Semper Fi), so he was away from home more often than not. Our relationship never was a strong one. Once I moved out and on my own our relationship changed. Im not sure how, some unspoken respect was gained on both our parts I guess. Once I gave birth to Ayden, his first grandchild, he was a goner. This big, stone hard, ex marine with bilateral tattooed arm sleeves, who was once in a motorcycle club was wrapped around this tiny, five pound fifteen ounces tiny humans finger. The love and bond between these two was obvious. He only got two years with that grandson of his. 

Me and My Dad. September 8th 2007

Dad and Ayden. Mothers Day 2007

I remember calling home and him answering the phone. There was a change in his speech, he was slurring. I remember asking mom what was wrong with him. I even remember asking her if he had been drinking, though my dad didn't drink. She said she didn't know, something was going on and they had a couple Dr appt set up over the next few weeks. He had been having weakness in his arms and his speech was getting worse. Many diagnosis' came up over the next few weeks but it was the one we were not expecting that was thrown on the table a few weeks later…

Mom, Ayden and Dad. August 27th 2008


My Father was diagnosed with ALS on September 18th 2008. I remember that day. Every year, I remember that day. I remember going to the neurologist with my parents hoping we were going to be told they had ruled that specific diagnosis out. That it was something simple that could be fixed with a pill or a simple surgery. Thats not what happened. Thats not what we were told. ALS. Mom and I knew that that meant, her more so than me. I knew it was a life sentence but I had no idea just how bad it would be. Dad didn't either, though he stated he didn't want to know. I didnt blame him.

Dad and me. Sept 2008

Dad and Ayden. Sept 2008

 BJ and I made the decision to move closer to help out once things started progressing with the disease. We rented out our house (that was NOT a fun and easy task). We put in our 2 week notices and packed up to head east. (Sounds further than it really was) Dad trained BJ at the pawn everyday and Ayden and I tagged along. One of the funniest memories of that time that I remember is driving down the road heading to the shop with BJ in the passenger side and dad in the back. Even though it was still in the beginning stages of the disease, the biggest symptoms he was having was the slurred speech. There was a big black bird in the road and it looked HUGE. I said "Oh my god, what is that!?" Dad answered. I had no clue what he said. I said "Oh, uh, okay." hoping to end the conversation because I didn't have the heart to tell him I didn't understand him. He then said, plain as day, "What did I say?" We all started laughing as I said I had no clue, Im so sorry! Bj then told me it was a Guinea (Fowl, bird). He totally called me out. He helped lighten the mood even though that should have been us. 
For the remaining months BJ worked at the shop. I stayed with dad during the day while mom continued to work during the week and she was at home with him during the evening hours and weekend. Some days were better than others. 

Ayden stole papas chair. Fall 2008

When I decided to write about this I had the intentions of writing more than I am. Though now that I am here typing it out, Im not going to go into the details. I honestly just do not want to relive them. I do have to say it was bad. This is not something anyone should have to watch a loved one go through, much less them go through it. Its a terrible terrible disease with no cure in sight. It literally traps you in your own body because you can no longer control it. It is a death sentence. My fathers progressed very very quickly. On July 25th 2009, my father passed away in the early morning hours.

When he passed away it was such a relief. I was so thankful that he was no longer suffering  and selfishly, I was so glad mom and I didn't have to suffer anymore. 

Ayden visiting "Papas Garden"

He was a USMC Jarhead through and through
*Semper Fi*

I miss him. Everyday, I miss him. We had just started a relationship and had so many more memories to make. I know my mother misses him. Everyday, she misses him. They were in a great place and were making plans for vacations on top of vacations. They were finally going to enjoy life together. I know its a part of life. I can deal with that. Though I can't deal with it for my children. Ayden barely remembers him but remembers the memories we talk about. Ramsey will never know him and that breaks my heart, all the memories and love my boys are missing out on. I guess that makes their relationship with their father that much more special. (His father passed away over 10 years ago)

You hear about more and more people being diagnosed with ALS. Or maybe its just that its more known by the public now. Like when you start looking at a specific vehicle you really want then you start noticing them everywhere. The most recent was the ALS Ice Bucket Challenge. Did we do one? Hell yeah we did! Did it raise money? Hell yes it did! Ive read on several different websites that is was the HOTTEST fundraiser of 2014 and raised over 100 million dollars to go towards research to help find a cure. That is what I would call success. 





There is also the ALS walk that raises money. There is one in Atlanta Ga every November. We have completed it twice since dad passed away, one in 2009 and 2010. Unfortunately, we havnt done one since. 





"Life is Short. Life is not guaranteed. You should live life to the fullest because you do not know when it will be your last day. You should hug your loved ones as often as you can and tell them how much you love them. Life is full of surprises, good and bad. Be nice to your neighbor, you honestly have NO idea what they are going through. Everyone is fighting a battle of some sort. "


All that being said, you have to choose to live. You have to choose to let it strengthen you and move on. The pain never goes away it just gets a little easier to manage. We compartmentalize things and sometimes, when we are feeling strong, we will take that folder out and flip through those beautiful memories that we hold on too for dear life. That, my dear friends, is a priceless gift from God. 


In Loving memory of Michael Scott Worley
Feb 28th 1961- July 25th 2009
Beloved Husband, Father and a sucker for his grandson. USMC and Proud Mason, member of Royston Lodge #52. 



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thebeggsbunch@gmail.com

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