Beating back Multiple System Atrophy by ‘Winning the Day’
In 2014, the MSA Coalition selected Tom Looney to be its first patient representative board member. A highly successful executive before being diagnosed with Multiple System Atrophy in 2008, Tom is keen and insightful, with a determined, positive attitude about his condition. In his new role, Tom serves as a patient-centric voice for other with this rare disease.
“I’m very open about my own experiences and approaches of living with Multiple System Atrophy,” said Tom. “I feel a kindred spirit when sharing helpful information back and forth with patients and caregivers, and I try to share all the best ideas forward online.”
Multiple System Atrophy requires a daily commitment to what Tom calls “Win the Day!” His approach is to focus on winning each day and doing it all over again the next day – with a regimen of diet, exercise, therapies, medications and supplements – to manage symptoms, strengthen his body and maintain a positive attitude.
“The biggest challenge with Multiple System Atrophy is that there are no clinical best practices, and each patient is unique,” said Tom. “The relentless progression of autonomic neuropathy poses the biggest challenge for me; nerves responsible for the proper function of my internal organs and life-sustaining systems are highly compromised. This is a game we can’t completely win until there’s a cure, but we can win a heck of a lot of days along the way.”
Tom recently created the “One Less Thing” fundraising campaign. He had noticed that many Multiple System Atrophy patients express the advancement of their symptoms in terms of things they could no longer do – things they used to take for granted, like simply driving to the store to pick up a quart of milk.
“The last time I communicated with the late great Chef Kerry Simon,” said Tom, “he put it this way: ‘Man, I am racking up a list of one less things I’m able to do!’ That led to a ‘One Less Thing’ concept where people express what one less thing they would sacrifice in order to donate something to the MSA Coalition – like giving up that daily cup of barista coffee for a month and directing a gift of $100 in the spirit of ‘one less thing’.”
Tom’s caregiver and wife, Trish, says that “The key thing that Multiple System Atrophy can’t take away from Tom is his can-do spirit – I sometimes have to keep him from overdoing things,” says Trish. “Multiple System Atrophy symptoms can worsen when the patient gets too tired or too stressed, and we always remember to take time out to quietly celebrate each day won.”
Trish’s efforts help to keep Tom’s time and energy free to focus on health, wellness and online interaction with patients and MSA Coalition members. In addition to managing medications and supplements, doctor appointments and physical therapy treatments, Trish keeps Tom’s daily healthy diet intact. She also makes sure that the couple’s two young sons understand that Dad’s doing as well as he can, explaining his condition to them in age-appropriate details and language.
“I’m especially thankful to the MSA Coalition for the valuable caregiver tools it has produced over time,” says Trish. “Today’s caregivers stand on the shoulders of those who have figured this out with far less quality information and support. Going forward, I hope the great research underway will produce better treatments and an eventual cure, so that generations to come won’t have to know about Multiple System Atrophy.”