More Than ALS

Stories Of and By ALS Families

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My name is Paul Miller and I have lived in Scranton, PA, my entire life. Since I was young, I loved taking part in sports, including cross-country, wrestling, baseball, and golf.

On September 28, 1985, I married Eileen, the love of my life. We had two children together, Paul Jr. and Nicole. While I enjoyed working in the printing and mailing industries, as well as other odd jobs like playing Santa Claus before Christmas, nothing was more important than family. Every day with Nicole and Paul was a blessing and I loved being there to coach Paul in baseball from T-ball until he was 17.

Our lives changed forever on July 5, 2010, when Paul Jr., at only 21 years old, was killed by a distracted tractor trailer driver. He still had so much life to live. After months of emotional and physical stress, I started to develop strange symptoms like loss of balance and strength in my legs. The symptoms worsened as we drove hours back and forth to see doctors in Philadelphia.

After over a year and a half of uncertainty, I was diagnosed with ALS on August 12, 2012, at the age of 55. This month marks 10 years since that diagnosis.

Once I was diagnosed with ALS, I had to quit my job and all my side jobs. With my symptoms progressing, I had to give up playing the sports I so loved too, even though I continued to golf for five years after my diagnosis. As my wife and friends know, I can be stubborn, so I kept trying to walk, which led to multiple falls. I went from a cane to a walker to a power wheelchair.

Today people have a hard time understanding me and most people do not understand the realities of ALS. Everything from getting dressed to eating to tying my shoes or answering the phone takes longer for me. Every physical act is a struggle.

As much as ALS has changed my body, it hasn’t changed my drive and it hasn’t changed my life for my wife, Nicole, and our growing family. I’ve always been a very determined person and Eileen helps me to continue to stay true to myself.

Every day, we show how strong we are together. We speak at colleges about understanding ALS and about the dangers of using your cell phone while driving with the hope that we can save lives. We visit political leaders in Harrisburg, PA, and Washington, DC, to change policies and increase funding for care and research. Over the past decade, we have talked with countless students and lawmakers and I know that our story, as painful as it can be, has made a difference.

Today I can look at our daughter Nicole and her beautiful 5-year-old, our granddaughter Kaia Rose, and look forward to a bright future for our family and our world. A future that is More Than ALS.

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This is my husband, Sergeant Major Robert Fontello, before ALS.

Bob was born and raised in Christiana, Delaware. From his earliest years, “Bobby” Fontello played baseball and football. A popular and funny boy, he was voted Class Clown, a well-earned accolade.

Following high school, Bob enlisted in the United States Marine Corps. From the onset, he excelled in the Corps, graduating as Platoon Honor Man at MCRD San Diego. After 25 years of dedication to the Corps, he retired as a Sergeant Major. Throughout two and a half decades, Bob shaped the lives of hundreds of Marines. One high point of his Marine Corps career was his selection to The Presidential Helicopter Squadron, where he served as a Marine One Crew Chief for President Ronald Reagan. Bob was deeply rooted in the Marine Corps, and he remained involved in Marine aviation after his USMC retirement. On the civilian side, Bob was the Lockheed Martin and Sikorsky Aerospace Operations Manager for the VH92 Presidential Helicopter Program. Due to ALS, he was medically retired from his position in February 2022.


Before ALS, “Sergeant Major” enjoyed getting away and spending time with his friends. The beach was a favorite destination, and, often, we would travel to our beach home. He loved the water, boating, and seeing just how fast our Sea-Doo wave runner would take him. For fitness and fun, Bob would paddleboard in the waters of Chincoteague, VA, and Padre Island, TX. He was dedicated to working out and was routinely in the gym six days a week. When back in Pennsylvania, he hiked the mountains around our Tioga County home. Bob was a fisherman and a deer hunter. He enjoyed hunts with family and friends at our ranch lease in Texas, as well as in the woods of our home base on Camp Overlook Road. Bob loved riding his Harley Street Glide and embraced the camaraderie of fellow Marine riders.


Before ALS (and even now), Bob would be the first to tell you how much he loves you. The day he walked into my world, he captured my heart. August 8th will be our 14th wedding anniversary. Bob was gladly promoted to the high rank of “Pop” Sergeant Major with the arrival of his grandchildren.


The first insidious symptoms of ALS showed in the summer of 2020 with lower leg cramping, followed by upper arm range of motion limitations. When fasciculations appeared a few weeks later, we knew something was terribly wrong. The diagnosis of ALS took nine months of neurological testing, blood work, CT scans, and MRIs. During that time, Bob’s speech was beginning to slur, and his ability to complete heavy physical tasks was challenging. His diagnosis date was February 25, 2021.


As of now, Bob is still able to walk short distances with a walker; he requires noninvasive ventilation most of the time, his nutrition is 100 percent via a gastric feeding tube as swallowing is extremely difficult, his hands are limited in movement, and, very sadly, he can no longer speak.


Before ALS, we had plans and dreams for our future. Living with ALS has altered the path of our footsteps. If there is any good in the mess of ALS, it is the people, the ones who share your journey. Life is now measured in moments, and through faith today is sufficient.