On Saturday, April 27th, the Multiple Sclerosis Association of America (MSAA) in collaboration with Children’s Hope for Understanding Multiple Sclerosis (CHUMS) held a program entitled “Bridging the Communication Gap between Parents with MS and their Children” in Duluth, GA at Dave and Busters. The program which focuses on heightened communications between family members about multiple sclerosis (MS) was presented by Dr. David Rintell from Partners Pediatric MS Center at Brigham & Women’s Hospital in Boston and Sue Rehmus, Founder of CHUMS and Vice Chair of MSAA’s Board of Directors. The program is unique in that it is split into two facets, as parents receive a presentation from Dr. Rintell in one room while their children spend time with Sue in another area. Both groups work on learning strategies on how best to understand and talk about MS and the many issues come along with that diagnosis in the family dynamic.
The program in Duluth, which is the first in a series of these programs that MSAA will be facilitating, was wildly successful as 20 families participated. In the parents’ session the group learned about communications strategies relating to MS, as well as how to best enumerate on the various issues that may arise on a daily basis with children that may not have a firm grasp on the disease and its associated symptoms.
In the children’s room, the participants who ranged from ages 6 to 18, engaged in a number of “hands-on” exercises. The various activities enacted by the group included a the concept of “trying on” the symptoms of MS through household items, like blurry glasses, macaroni in shoes, and wearing gloves while trying to turn the pages of a magazine. These efforts gave a greater perspective to the children on what their parent with MS may experience on a day-to-day basis. One child specifically said, “I couldn’t wait to take those glasses off, but it makes me sad to think that my mom never has that choice.”
“Bridging the Communication Gap between Parents with MS and their Children” is a phenomenally multifaceted program that engages all levels of the family into the MS experience, please take a look at our calendar and see if this program is coming to a city near you this year. We’d love to have your family experience this opportunity!