Joyce Paugh thought she had so much time with her husband, Racey. In 2005, he was 61 years old and starting retirement from DuPont. He started to feel some numbness in his arm, so Joyce and Racey sought some medical opinions to check out what seemed to be more of an annoyance than anything. After increasing symptoms and more visits, Racey was diagnosed with ALS in June 2005 and, just like his name, his life became a race against time.
When Racey first developed symptoms of ALS, he was looking forward to a long retirement with his beloved wife and their extended family. Their daughter had finished schooling to become a nurse and was not only starting out in her own career, but was starting a family, including having just given birth to the first of their two grandsons. Racey adored his first grandson and saw him as the apple of his eye. Life was perfect.
Joyce and Racey had a doctor who treated them very well. He tried many tests and sent them to many specialists, but they could not get answers to his worsening symptoms. Finally, their doctor sent them to Johns Hopkins University, where he was diagnosed with ALS. Not only did Racey and Joyce not have any personal connection to the disease, their own doctor had not had any patients with it personally either. They knew that the journey ahead would be difficult, but they also knew that they would be by each other’s side no matter what. Their doctor continued to help them with advice and even home visits.
In 2005, there were very few services available where the Paugh family lived in southern Delaware. They had speech and physical therapists who made life with ALS easier, but his symptoms progressed so rapidly that Joyce could never know what question to ask next. His family would come by to show their love and support, dress up as clowns to make him smile, and bring him his favorite chocolate chip cookies and deviled eggs. While Joyce remembers the pain of ALS, she also recalls the love they received throughout his battle.
Racey’s family also set up a special bank account so that everyone could chip in to help pay for medication and other costly needs. Joyce was preparing for anything to support her husband and to make him more comfortable. He passed away on Valentine’s Day, 2006. Joyce’s heart hurt because they had shared so much love.
After Racey passed away, Joyce knew she had to do something to help other families. If they had just faced this whirlwind of ALS, others must be in the same situation or worse. Her family agreed and they decided to start an ALS walk to try to raise money. They contacted Sea Shore Striders, who helped organize their first walk in Cape Henlopen State Park in Lewes, DE, in September 2006. During their second walk the next year in 2007, Joyce met Mary Ann Wollter and her daughter Mary Lou. Mary Ann had just lost her husband Gene to ALS. Together, Mary Ann and Joyce became a powerhouse against ALS, helping to form the Rehoboth Beach ALS United Walk in 2008.
Joyce and Mary Ann bonded over their mutual connection to ALS. Instead of only bonding through pain, they bonded through hope and action. They helped build the Walk and bring attention to Delaware families impacted by ALS. In addition to the Walk, Joyce organized a support group for ALS caregivers, which meet monthly to share thoughts and friendship. The group continued for a few years with Joyce’s guidance.
Mary Ann Wollter and Joyce Paugh remained the closest of friends until Mary Ann passed away in 2022. For nearly 15 years, Joyce and Mary Ann were a dynamo team who advocated for better care for those living with ALS and for new treatments to end the disease.
Since becoming an ALS United Walk organizer, Joyce has found many fun and creative ways to raise money and awareness for the ALS cause. She has helped organize bingo at camp grounds, spaghetti dinners, selling snow cones at Go Kart races, and anything else that can make a difference.
One of Joyce’s favorite projects was the “A Night of Hope” event with live music entertainment, discounted pizza from local restaurants, selling baskets honoring loved ones with ALS, and giving away pens and other items.
“Every time that I attend an ALS United Walk, I pray that what little bit I have done to honor the love of my life has not been in vain,” said Joyce. “My main goal was to eventually help raise a million dollars to end ALS, and we did. I thank God every day that we could do this.”
Now that Joyce has passed her 80th birthday, her family has taken on more of the leadership in the fight against ALS in her area. Her niece, Nicole Messick, continues to organize and fundraise to support the ALS United Mid-Atlantic mission. Nearly 30 family members of all ages have helped Joyce raise money and awareness to end ALS since 2005. They never forgot Racey or their promise to Joyce.
One family member made an extra special promise to Joyce so that they would always celebrate Racey.
Joyce’s nephew made a pact with Racey before he died to always honor Valentine’s Day and his love for his wife. Now, every Valentine’s Day, Joyce receives a dozen red roses with a card saying “Always and Forever,” which is how Racey signed his cards to her.
Racey is always with Joyce still to this day, forever in her heart and on her mind.
Thank you, Joyce, for being with all of us at ALS United Mid-Atlantic. Your love for Racey and your determination motivate and inspire all who meet you. We are honored to recognize you as our January 2025 Volunteer of the Month.