The Cause

The Following is From Steves Site: alswillanoia.com

 

About Steve

 

To quote John Cougar Mellencamp, “I was born in a small town.”  I was born in 1979 in the coal region in a small city called Shamokin, PA.  I am the oldest of 4 boys who were raised or tolerated (depends on the brother) my 2 great parents.  My family would then move to Kulpmont, PA where my brothers and I would attend Mt Carmel High School.  Growing up in a small town gave me the foundation of many values that shaped me into the man I am today.  I would then attend Kutztown where I majored mostly in socializing.  Here is where I would meet my best friends and the eventual love of my life, Jill.

Soon enough we would be the parents of 2 amazing sons and move into the wonderful community of Royersford, PA.  I spent most of my life working as a restaurant manager.  Over the better part of 15 years, I have worked in a handful of different positions at multiple establishments.  From my staff to our guests, I created a pretty strong network of people.  As much as I loved the business, it was tearing me apart not being there seeing my sons grow up.  I started to hate the job and the hours so much that I had to make a change.  I finally got a break and made a transition into the banking world.  Finally, the work/home balance I have been waiting for so long.  A career that allowed me to help members of my community and no more would I miss a  game, a play, or a family function because of my work hours.  It was such a relief to finally get to a position in my life that I wanted for so long.  I was the happiest I have ever been.

Then it happened.  My speech started to become slurred around early 2017.  This time it wasn’t because of too much craft beer or dirty martinis.  It began to progressively get worse over time.  It was now the summer of 2017 and I had no answers.  I had an ENT tell me that it was because of an abscess in my throat so he prescribed me with a steroid and antibiotics.  In 5 days my speech was getting better and I was elated.  In the following days it would progressively improve little by little.  One day I woke up and could not move my tongue at all.  It felt like it was cemented to the bottom of my mouth.  I tried to say my wife’s name and some murmured sound came out.  We called the ENT and he said to come in right away.  No access.  He was confused.  He sent me to a neurologist who said that I was fine and the abscess must have caused nerve damage to my tongue.  Frustrated as hell, I went back to my family doctor who said to see a different neurologist and so we did.  He ordered so many blood tests for every neurological disease possible.  The word “hope” began to become a prominent word in my life.  Day by day, test results would come back negative.  Nope it’s not this or that.  Maybe it is this…nope not that either.  That 4 letter word that once gave me a sense of security started to piss me off.  People would say “keep hoping” when I wasn’t so sure I believed in that word anymore.

It was now January 2018, and we continued to eliminate a  possible cause of my symptoms what seemed like every day.  My doctor said let’s do an EMG (Electromyography) to see what is going on with your nerves as they relate to your muscle movement.  So I went home and googled (I do not recommend googling anything medical about yourself unless you want to scare the hell out of you) what the EMG would test for and the list was not a happy list.  Some of them we have already ruled out which only left a handful.  The shortlist had one thing in common…fatal.   Jill and I got into the car that day and we drove to the doctor.  Needles were placed into muscles all over my body as he sent electronic pulses to see how my nerves and muscles responded.  It was cool for a second as it looked a little bit like Luke Skywalker when he got his mechanical hand.  But when he got to my hands and my tongue it quickly became not so enjoyable.  In the end, he said to me “well there is some delay in your muscles reacting to your nerves.  I will be honest with you the few possibilities are a death sentence.”  It was what I feared the most from my googling and there was always that lingering possibility of my biggest fear.  I watched my nanny suffer from ALS which would eventually take her life.  I felt a feeling of anxiety take over my body and it was a feeling I never experienced before.  I cried.  I was unable to catch my breath.  Jill and him talked about what I do not know.  My mind raced and raced going from dark place to an even darker place.

This doctor then set us up with an appointment to meet the staff of the ALS for Hope Foundation at Temple.  February 8th, one day after my 39th birthday, would be the day my life changed forever.    We ordered more blood work to ensure that the previous doctors didn’t miss anything.  Unfortunately, they did not.  I found it ironic that the word “hope” I have grown to hate would be so prominent in my life.   I didn’t sleep well at all for weeks.  My mind would go from anger to sad daily.  It was such a weird feeling and all I thought about (and still do) is how long will I be here and how will Jill and the boys be if I am not here.  So many questions.

While I struggled with losing my voice almost completely and not being able to eat very well, I still had a job and a great family.  As you can imagine, being a banker and not being able to speak clearly is not a good thing.  Somehow I was able to have my best month yet and just kept telling myself “head down and day by day.”  Then I picked my head up and saw an email invite from the head of HR and my manager for a meeting.  Uh oh, it’s happening.  How can I provide for my family without working?  What will I do?  The meeting came and I was blown away when they offered me the chance to continue working in the web banking department.  I had to prove I could do the job and I am happy to say I have adjusted quite well to the new role.  While I miss my in the branch family a lot, my new team and the whole corporate office has embraced me right away.  They haven’t once treated me with pity or someone with a disease.

So now it June and it’s been a year since my initial symptoms and I have been pretty happy considering.  This past week I have been almost unable to eat or drink really anything at all.  I have become dehydrated and undernourished.  Yesterday we spoke with our doctor and I am being scheduled to have a feeding tube installed to ensure I am getting properly fed.  While this is not what I wanted it will benefit me a great deal to maintain a quality of life again.  So I speak now through app on my iPad or iPhone and  I will eat through a tube directly to my stomach.  That’s not so bad. So here we are today waiting at Temple Hospital on June 12 about 12 hours away from my feeding tube being installed.

Just days before this I received word that my genetic test showed a mutated gene.  Ready here it is again.  We are hoping the newest medical advances in gene therapy can lead to some real answers. So I taking life one day at a time.  Trying not to look ahead or behind but staying in the moment.  It is not easy to do at all.  I have played so many “what if I did this or that” and for what?  I cannot change anything but I promised myself to change what I could and not dwell on what I cannot.

I decided to share my story mostly to raise awareness for this terrible disease.  I heard a doctor say recently “we are as close to and as far away as ever to a cure”.  So donate if you can.  It all takes funding.  Look what cancer research has done with massive funding and all of the advancements in ALS research since the Ice Bucket Challenge a couple years ago. So let’s all “hope” for the best and maybe we can save some lives in the future.  Maybe not mine, your child’s, or you own.   Thanks for listening and feel free to share my blog and page.  Check out the website below and see all of the great things the clinic I go to does for others like me.  They truly are amazing people.  I love you all and thanks for being part of my village!!