"The women traveled with husbands, mothers, sisters and aides, and they did not travel light. Their packing lists included heavy BiPAP machines to help them breathe, formula for their feeding tubes, commodes, portable bidets, myriad chargers, leg braces and canes, pills and pill crushers and bottles of a medication with gold nanoparticles that was still being tested in clinical trials."
"Half of Brous' suitcase was filled with party gifts for the friends she texts with throughout the year on an endless WhatsApp chat, including bags of popcorn with Texan flavors like Locked and Loaded, a cheddar, bacon, sour cream and chives combo that you can only get in Hico."
"The most stressful part of the trip for Sunny Brous came when she had to part with her wheelchair so the flight crew could put it in the luggage hold. You just never know what shape it will be in when you get it back, she said. "I tell them, 'Take the best care of it you can,'" she said. "Those wheels are my legs! Those wheels are my life.""
Dozens of women in their 20s and early 30s diagnosed with amyotrophic lateral sclerosis gathered at Sea Crest Beach Resort on Cape Cod for a unique annual meeting. The group traded stories, drank tequila, and made grim jokes while relying on humor and companionship to cope. Travel required extensive medical gear including BiPAP machines, feeding tube formula, commodes, portable bidets, chargers, leg braces, canes and experimental medications with gold nanoparticles. Attendees traveled with family members, aides and heavy equipment such as Hoyer lifts and worried about wheelchairs being damaged in transit. Small rituals and year-round messaging sustain the community's connections.
Read at Boston.com
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