ALS Clinic Connection hits milestone
One of the most debilitating side effects of battling a serious illness is the isolation many patients and family caregivers experience. That's why last week's celebration of the 50th ALS Clinic Connection luncheons at BIDMC was such a major milestone.
What started four years ago as an alternative to patients grabbing a quick jelly donut between numerous day-long appointments has grown into an important support group.
Walter Bentson, a patient with primary lateral sclerosis (PLS), in the same family as ALS, a progressive, fatal, neurodegenerative condition also known as Lou Gehrig's disease, noticed that he kept seeing many of the same faces in the waiting rooms on monthly clinic days. One patient in particular caught his eye, Richard Hackel, a friendly fellow who always wears red socks.
"I probably saw Richard on clinic days for two years before we finally met," Benston recalled. "I saw that he wears an ALS bracelet so I said, 'Hey, we've got to pull together somehow.'"
Hackel agreed, and the two men that share a mischievous spirit, a love for baseball and an ability to stare adversity in the face and press on, soon became fast friends.
"It's invaluable to us to supplement the therapy we get at the clinic, and these lunches enable the patients and caregivers to have a large circle of friends and supporters who can assist them, and advise them," said Hackel . "We're forever grateful that the hospital has supported Walter in this endeavor."
Bentson approached Cynthia Wise Wagner,Manager of BIDMC's Voice, Speech and Swallowing Service, with the idea of starting the monthly luncheons.
"He said, 'You get the conference room and I'll get the food,' and that's what we did," she said.
While the food is great -- and safer for patients who have trouble swallowing -- it soon became obvious that these lunches were more just a nice meal.
"When it first started I had this idea it would be good to give patients a respite in the middle of the day, but I didn't know it would become a patient resource," said neurologist Elizabeth Raynor, MD. "This has become a patient-to-patient and family-to-family resource that is much more meaningful to patients than the food. Many patients come even when they don't have appointments so that shows you how important it is."
BIDMC Trustee Meg Grossman, a longtime friend of Bentson from his days as an umpire and President of the Boston Park League, took notice as well.
"At the time I was chairing the Board of Overseers and I wanted the board to know about patient-generated programs like this that are so successful," she said. "I started attending and reporting back to the board about what goes on here that's so beautiful and so wonderful. Now I'm a trustee and I do the same thing. I invite people to see what's happening because programs like this need funding. I invite people to attend, learn and enjoy."
In addition to Benston, Grossman and Elizabeth Lane, whose daughter, Andrea Battit Fisher died of ALS in 1999, have helped underwrite the cost of the lunches. Grossman has also funded a program that helps provide hotel rooms for patients and caregivers who travel long distances on clinic days. Lane also funds the Legacy Project that offers a free documentary service to BIDMC patients with ALS who wish to create a lasting message for family members before they lose control of their speech.
Celebrating the 50th luncheon, Wagner announced that Bentson - "our team captain" - had recently convinced the organizers of the annual 100 Innings of Baseball fundraising marathon event for ALS research and services to donate this year's proceeds to BIDMC's ALS Clinic. "That means we'll have enough for another 50 luncheons and I hope you all are here for every one of them," said Bentson.
To facilitate the fundraising, Bentson and the 100 Innings organizers teamed up with BIDMC's Grateful Nation. So far, close to $16,000 has been raised to help fund ALS Clinic programs. To learn more or make a donation, go to the Grateful Nation Web site.
"Hearing or reading about these lunches is not the same as being in the room," said Marsha Maurer, RN, Senior Vice President of Patient Care Services and BIDMC's Nurse-in-Chief. "It's all about patient engagement and patients taking control of their own care."