Tony Caruso was a busy OB-GYN who delivered hundreds of babies each year. So, it was no surprise when he began to notice symptoms of what he assumed was carpal tunnel syndrome.
“I had these symptoms on and off for years and considered it an occupational hazard. The difference this time is that the symptoms didn’t go away. I also fell and was having some trouble getting out of bed after that.”
Doctors recommended several surgical solutions. But the symptoms persisted, and Tony kept looking for an answer. “One month following my carpal tunnel surgery, although my hand was better, my arm was losing strength and my other hand was becoming weaker. My surgeon recommended a procedure on my cervical spine that would release the affected nerves. After having surgery, I could not move my right arm. Some small movement returned in a few days.”
“Tony never really thought that he had ALS because his doctors were telling us it wasn’t ALS,” says Barb, Tony’s wife. «I know that ALS is a diagnosis of exclusion and I’m assuming that they probably hadn’t yet excluded everything.”
After adding physical therapy and running more tests, Tony’s physicians finally began to look at ALS as a possibility. They made an appointment at the Les Turner ALS Center at Northwestern Medicine where he was diagnosed with ALS and connected to the Les Turner ALS Foundation.
“We work closely with our ALS Support Services Coordinator, Julie,» says Barb. “Julie has been phenomenal in helping us get equipment, providing us with valuable resources, as well as answering our questions. We also realized what a small world it is when she connected us to a family after the wife passed from ALS. They provided us with some equipment that Tony needed. After speaking with them, it turns out that the son of this family was a former student of mine!“
Even with the proper support, adjusting to the new normal of living with ALS is not easy. Fortunately, some things have remained the same for Tony and Barb like their faith and their closeknit family. For the 30+ years that Tony and Barb have been married, they had date night on Fridays. This has evolved into pizza and movie night with their children.
“We have six grown children, and everyone pitches in,” says Barb. “Because we have so many kids and a great support system, I’m fortunate to be able to take breaks when needed during the caregiving process, and Tony is able to be taken care of.”
As an avid music aficionado since childhood, Tony can no longer play the accordion or sing since he has lost his voice due to ALS. This has been a painful experience for him. However, he continues to surround himself with music by listening to various artists and songs during the day like one of his favorites, Billy Joel.
“Music has been a part of my life since childhood. I started playing the accordion since age 7 and sang in choirs through school. About 10 years ago, I started singing in barbershop quartets. I’ve sung the Ave Maria at a number of family weddings including one last time at my daughter’s wedding last year.”Although Tony and Barb are no longer able to enjoy all the activities they once did, they are grateful for their family and finding new ways to enjoy their time together.
“Tony and I want others to know that there’s a lot to be gained, a lot to learn, and a lot of growth following an ALS diagnosis,” says Barb. “We look at people differently and we receive people differently. And I think that those are good things. Surprisingly, there’s even more laughter now in our household than there was before which is hard to imagine because ALS is ugly. But it’s what helps us get through our day and what has brought our family even closer.”
Help us help other ALS families like Tony and Barb’s to continue their fight and to be able to spend more precious time together.
