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A Wonderful Life, Even with ALS

As Ed Mytych approaches his 74th birthday, he can’t help but look back on the wonderful memories he has made over the years with friends and family. In 2024, he will be celebrating 43 years of marriage to his wife Mary Beth. She has been by his side through every up and down in life, and now as his caregiver since he was diagnosed with ALS in May 2023.

Despite his slurred speech, occasional swallowing difficulties, orthopnea, and what he calls his “human phlegm factory,” Ed is still doing all he can to live the American Dream to the fullest. He may not be Jimmy Stewart, but he still says, “It’s a Wonderful Life!”

In addition to Mary Beth, Ed’s friends, family, and faith all give him strength, which was on display during the 2024 Hershey ALS United Walk, where his team was recognized as the top overall fundraiser. Ed was overwhelmed by the support from friends and family both near and far who attended the walk or donated online.

Before his ALS diagnosis, Ed went on some epic father-son trips with his sons Dave, Pete, and Andy, who lives in Michigan with Ed’s grandchildren. Together, Ed and his sons traced his family roots to his grandfather’s hometown in southeast Poland in the cold of winter to save money, which they realized may not have been the best idea when it was freezing every day of the trip. They also zipped around Washington, DC, on Segways. “I didn’t fall of once or run into anything,” Ed proudly exclaimed.

The Mytych men spent nearly a whole week at the daily Oshkosh, Wisconsin air show where Ed’s sons treated him to a flight on an actual WWII B-17 bomber!

“I love my boys more than anything,” said Ed, looking back on his incredible trips and memories.

Today, Ed is on a different journey. This time it is a journey with ALS. He has “un-retired” and now dedicates his time to participate in every drug trial and research study he can. Since 2023, Ed has participated in nearly 20 different studies. Stories of young people battling ALS motivate him to do everything in his power to help find a cure.

When Ed isn’t traveling to visit with Dr. Simmons and the compassionate team at Penn State Health Hershey Medical Center, or having blood drawn at home for another study, Ed is busy volunteering with a group called “The Mappers.” This project, conceived by a young Californian with ALS named Pat Dolan, helps ALS patients find the right clinic using online resources with The Clinic Locator and The Clinic Advisor. They encourage everyone with ALS to complete the online survey once per year to keep the database up-to-date.

ALS may have slowed Ed down somewhat, but it hasn’t stopped him from living the best life possible. With love and support from his family and friends, and his faith guiding him, Ed knows that he is not alone and he is ready to face any and all challenges.

“A wonderful life with ALS for me?” asked Ed. “My friends and family wouldn’t have it any other way.”

As a father, Ed has given life lessons to his sons since they were born. Now, Ed continues to teach them about life through his personal example of how to make every moment count.

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