As a COPDer, sometimes you may ask, “What can I be doing?” “What is going on around me, in terms of COPD advocacy?”
There are groups all across the US that organize themselves and get together for impromptu lunches, or events that focus on connecting and sharing advice and information.
A bit ago we featured a blog about a group of COPDers in Florida who created their own support group.
In New York there’s a group of COPDers from Winthrop University Hospital who gather every now and then for different events. Coming up in September is their next event, the Jones Beach Walk, on September 16th, starting at 11 a.m.
“It’s wonderful because our support group does a lot of things, and it enables the group to go together someplace and you don’t feel strange wearing oxygen, using a scooter, or walking slowly,” Dolores Wissel says. “It’s wonderful to see a whole group of people together, glad to see each other, some wearing oxygen and no one feels ashamed.”
Wissel, 69, has been a member of the [name] group for 22 years, and says she loves the outings they go on because it strengthens the bond between the COPDers and allows them to meet new people and try new things.
The Jones Beach Walk doesn’t even necessarily need to be a walk, according to Wissel, if people cannot do it, they can still participate in lunch and conversation.
“We have so much fun and we don’t pay attention to anything except getting out[side] and feeding our souls,” Wissel says. “We go to the theater, picnics, we do lots of things. On a good day, we have 50-60 go out [for an activity].”
Rocco Lodise, who has been a member of the Winthrop Support Group for 14 years, says it’s a great opportunity to get together with other patients who have similar ailments and things in common.
“You make friends and have lunch and of course take a walk if you like. It’s really entertaining,” Lodise says. “It’s another reason to get out of the house and into the fresh air and sunshine.”
Lodise says everyone is welcome, and he recommends it to anyone with COPD and other lung diseases.
“It’s the perfect time to be out and meet other people with similar medical problems. All different but similar. But we all have the same common demoninator,” Lodise says. “And we’re all able to gel…someone might share a secret of what they do in a certain situation and you share with other people how you get along [with COPD].”
Mara Bernstein, L.R.T. and Administrative Director of Out-Patient Services in Pulmonary and Critical Care Medicine at Winthrop Hospital, says even if you’re not a member of their support group, you can still come out and particiapate.
“Come down to the beach and enjoy an [easy]-breathing day with salty air that opens the airways,” Bernstein says.
Berstein says not much walking is required, but they’d prefer a call so they can provide lunch. (516) 663-2579.