Peter Ingraham was an avid guitarist till he started experiencing weakness in his left index finger. Years later, Peter was diagnosed with myotonic dystrophy type 1 (DM1) in the summer of 1991, when he was 30 years old. After sharing the news with his family, his four siblings subsequently tested positive for DM.
“I had never heard of myotonic dystrophy before the neurologist diagnosed me with it,” Peter said.
He and his wife-to-be at the time had been seriously dating for around three years by the time of the diagnosis. They got married two years later, in February of 1993.
Living in Boston for the first five years of their marriage, Peter’s commute to work involved a subway ride and a 3-mile walk, which gradually became difficult as years passed and his symptoms became more pronounced. By 1997, he started experiencing issues standing without assistance. Looking for support, Peter soon decided to visit a Muscular Dystrophy Association (MDA) clinic, who recommended the usage of ankle foot orthosis (AFO). These AFO braces helped him walk without extra help for over 20 years!
The DM gene in Peter and his four siblings was inherited from their father, whose two siblings had also been affected by the disease. “I have seen my aunt wear leg braces but they never told us about DM because we looked healthy,” Peter shared. “I was the first one to be diagnosed probably because I was the first one to have my life seriously affected because of it.”
Peter’s father, who was asymptomatic, lived a healthy life till the age of 79. “He had back problems and cataracts, but those are such common symptoms, I mean, that can happen to anybody as they age,” Peter said.
Peter, currently age 62, is the longest living sibling. His younger brother, who never walked, lived with congenital myotonic dystrophy (CDM) and passed away at the age of 35. His younger sister died of lung cancer at the age of 51, and his two older siblings died at ages 57 and 60.
Although his siblings had children before they got diagnosed, Peter knows at least one of his nieces is living with CDM. Two of his nephews, who are now in their 30s, have never been tested because they do not wish to know.
Instead of having children, who had the possibility of inheriting the disease, Peter and his wife decided to adopt. In 2004, they brought home a little girl from Guatemala, who is now a sophomore at the University of Florida.
The first few years after the diagnosis, Peter led an active life. He played ice hockey in the men’s league, ran the half-mile leg of the relay-race portion of the “Corporate Cup,” played first base for his intra-company softball team, ran the 5K Catfish Festival Race as well as the 4-mile Easter Beach Run. His physical decline has been slow but steady over the years.
“I am fairly disabled but I like to refer to my inability to do things as tipping points,” Peter said. “I have drifted away from the guitar over the years, I don’t skate, drive, or even walk now since I move around on my scooter these days.”
Peter has been involved in clinical trials for myotonic dystrophy. In 2014, he participated in an antisense pre-trial bio-measures study at the University of Florida. He has also been a participant in the MARINA™ study of AOC 1001 by Avidity Biosciences.
“I want to volunteer for the DM community as much as I can,” Peter said. “I want to help out, advance the cause, advance the research.”
Aside from volunteering in the DM community, lately Peter has reinvigorated his passion for reading. Science fiction, historical fiction and murder mystery are some of Peter’s favorite book genres.
In addition to his immense love for reading, Peter thoroughly enjoys writing as well. Before his brother and best friend, Edward, passed away in 2019, they were both drafting a book together, penning their experiences and stories from when they were growing up in small-town New England. He has since finished writing the book and is collaborating with his wife to edit it.
“My lovely wife Lorie has been with me all the way and is now my personal-care giver, coach and agent. I have a positive attitude thanks to her,” Peter shared. “All things considered; I've been very lucky to have the support of such loving friends and family.”