Ron Presby and Bob Shuman tied the knot on Aug. 4 after having met for the first time more than 35 years ago in a Philly bar. As PGN chronicled in our wedding announcement last summer, the couple parted ways for a while, but eventually came back to each other 18 years later, and have been together ever since. When marriage became legal in Pennsylvania, they couldn’t wait to make it official.
Little did the couple know that shortly thereafter, they would face a challenge that would put their relationship to the test, changing their dynamic forever.
It began at a surprise anniversary party in Connecticut for Shuman’s niece, about a month before their wedding. That is when Presby fell over unexpectedly.
After their wedding, Shuman began to notice that Presby was not walking like he normally did. That is when he began to suspect that something was seriously wrong.
The first diagnosis said it was a neurological problem related to the spine, and Presby was scheduled to have spinal surgery.
Upon further examination by his neurologist, Presby was instead diagnosed with amyotrophic lateral sclerosis or ALS, also known as Lou Gehrig’s disease.
“I saw how the muscle began to gradually break down,” said Shuman. “Coupled with the increasing fatigue, I knew it was something more serious but I didn’t want to believe it.”
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over time, individuals with ALS lose the ability to control muscle movement.
Over the course of their long-term relationship, Presby and Shuman have experienced ups and downs, but this was something neither of them ever expected to have to deal with.
“It’s a bumpy ride now,” said Shuman. “But Ron’s spirit is great. He always has a great sense of humor.”
Shuman, 72, is thirteen years older than Presby, 59. Presby’s sudden decrease in independence has shifted the role of caregiver to Shuman.
“He used to be the caretaker of me,” said Shuman. “He’s always been my rock, and now it’s my turn to be his.”
Presby makes use of a walker and cane, and often needs help getting up from the seated position. Shuman says, at this point, he sometimes helps him walk, but tries not to overstep.
“I’m trying to let him do what he can for himself,” Shuman said, “in the hope that he can retain his independence longer.”
Presby acknowledges his new reliance on Shuman but said he isn’t ready to relinquish his independence yet.
“I need his help for almost everything now,” said Presby. “But I am a pretty independent person and I believe that, by helping myself as much as I can, I can keep what muscle I have left working.”
While it is unclear at this point just how fast or to what degree the disease will progress, Presby and Shuman are grateful they got married when they did.
“I am so grateful that Pennsylvania allows marriage,” said Shuman. “We would be going through a lot of trauma right now, with me getting shut out of care at hospitals and things like that if we weren’t.”
The couple is also making the most out of their time.
“We are taking Ron’s grandson to Disney World in April,” said Shuman. “It’s going to be a happy time for us and our grandson.”
“Emotionally I try and stay positive and remember how I have been blessed in life,” said Presby. “Sometimes it gets to me, like when my mind thinks I can do more than my body can handle.”
Together, Presby and Shuman are taking things day by day.
“We are one person,” said Shuman. “Whatever we are facing, we will face it together.”
For more information on ALS and how you can help, visit www.alsa.org. Read Presby and Shuman’s wedding announcement at http://bit.ly/1wIBrLV.