Mike’s Story
Mike’s Story
Last Updated on Tuesday, 25 May 2010 11:52 Written by admin Sunday, 3 January 2010 06:23
Childhood
My name is Michael Columbus Muscatello. I was born on October 12, 1937, one of nine children to Giuseppe and Amelia Muscatello. My parents were Italian immigrants who came through Ellis Island in 1912 and ended up in Windber, a small coal-mining town in Pennsylvania. My father was a coal miner in my hometown for about 50 years. He was so proud when he became an American citizen that he and Mom had their citizenship papers framed and hanging on the living room wall for everyone to see. He had a wonderful life until black lung took him at 81 years old. My Mom was a typical Italian mother – a wonderful cook and full of love for family, church and life.
Growing up in a mining town was a combination of hard and good times. My grandfather lived with us also and I don’t know how my parents did it – buying and cooking food for 12 people, keeping all the children clothed, warm and happy. But ours was a happy home. My mom died at the age of 96 in the home she loved so much with family and friends around her.
Career
When I graduated from Windber High School in 1956, the mining industry was in a lull so I went to Cleveland, Ohio with some classmates and found work in a factory. I had developed an interest in hair styling so I saved my money and a year later enrolled in the Cleveland Academy of Cosmetology. 18 months later I graduated and got my license to practice cutting and styling hair. This enabled me to get a position in a styling salon and after a short while I knew this would be my life’s work. I have worked in many different parts of the industry – cutting and styling, managing salons, running educational clinics, selling products.
During my time in Ohio I met my future wife, Joyce Fabian, at a friend’s wedding. We danced and talked all evening and I was surprised to find out she was the daughter of a coal miner in a different part of Pennsylvania. A romance started and eventually resulted in our getting married in 1961. Soon we were a family with baby on the way.
Our first daughter, Janet, was born in 1963. That same year I moved back home to Windber and I opened my first styling salon. In 1968 our second daughter Anita was born. Both daughters are happily married and Joyce and I now have five grandchildren – three boys and two girls. Janet is married to Sandro Marchegiani and they have two children, Stephen and Sarah while Anita is married to Randi Barra with three children, Logan, Mitchell and Karly.
Early stages of ALS
Around the middle of 1996 I noticed a slur in my voice and I had trouble swallowing. I went to many doctors and they could not find anything wrong. Then I started tripping and falling while I was just doing ordinary things. In 1997 I went to the Hershey Medical Center and was diagnosed with ALS, a disease I knew nothing about. I was told I had three years to live and in August of 1997 I was no longer able to work.
Three years passed and then four and then many more. It has been 13 years since my diagnosis and I am still going strong. I have had ups and downs along the way – I broke my hip in 1998 and while in rehab I fell and broke my wrist. I have participated in several drugs studies at Johns Hopkins Hospital and locally. I used a walker and a scooter to get around until 2007 – I have used an electric wheelchair ever since. Through it all I have had the support of my family, friends and medical professionals. And that has helped me to live a full life and keep a positive outlook.
My Military Service and the VA
In 1960 I volunteered to go into the US Army Reserves for 6 months active duty and 6 years of reserve duty. This involved Basic Training at Fort Knox, Kentucky and Advanced Infantry Training at Fort Dix, New Jersey.
In September 2008 Congress passed a bill concerning benefits for veterans. One of the provisions in the bill was that all service men who served 90 days or more continuous service and who later developed ALS would be entitled to a VA payment every month. I was initially granted the payment but it was later denied. The reason was because my service did not count as “active service” as defined in the bill. The six months I had been through is deemed “active duty for training” in the eyes of the VA.
I am currently appealing this decision. My reasoning is that I went through the same experience that an enlisted serviceman would have during my training – all soldiers were treated the same. Therefore I believe that I am entitled to the same treatment now. By creating and maintaining alslife.org we hope to clarify or change the law and help all servicemen with ALS get their benefits.
[...] can find more information about ALSLife Inc. and Mike Muscatello online. I encourage you to share your ALS story or thoughts below and also on share them with [...]
[...] Mike is an ALS patient who has been fighting the disease for 13 years. Mike is on a passionate mission to raise funds and awareness. To read Mike’s full story visit http://alslife.org/about/mikes-story/ [...]