How many times in your journey with ALS have you heard someone say, “Let me know if there’s anything I can do to help?”
“Thanks, I will,” is usually the response, but then no one follows up. Family and friends may be sincere and well-meaning in their offers of help, but they don’t realize how hard it is to ask for assistance just once, let alone many times. Nor do they grasp how complicated it can be to coordinate everyone who wants to do something.
Now, however, you have a real answer: “Thanks, I will. Give me your e-mail address and I’ll put you on myMuscleTeam.”
Launched in January, myMuscleTeam is a free, Web-based service offered by MDA to help people with muscle diseases and their caregivers develop a “muscle team” — a community of caring and helpful volunteers from your personal network of family and friends. The site enables users to post tasks such as driving, running errands, shopping and meal preparation, and provides family and friends the opportunity to sign up to assist with specific tasks. Users can reach everyone on their team — or just selected people — easily, quickly and privately with medical updates, schedule changes and other important messages. myMuscleTeam also sends automatic e-mail reminders to people who’ve volunteered to help with specific tasks.
Amy McCord of Denver, Colo., says myMuscleTeam has been a big help to her since her mother was diagnosed with ALS in November. With no family close by, McCord relies on about 20 friends who have signed up on her myMuscleTeam page to drive her mother to and from medical appointments.
“It’s been very easy to use, very self-explanatory,” McCord said of the site. “I use it to keep family and friends up-to-date on the prognosis, to assign tasks, and to notify people of changes and things like that.”
McCord’s friends like the site as well. “They say it works great, and it’s simple to sign up and volunteer. Nobody has missed an appointment yet.”
In its first three months of operation, MDA’s myMuscleTeam site logged about 44,000 visits to its starter page and about 250 individual communities were created. There were 58,000 visits by community members and 5,100 tasks posted.
It takes only a few minutes to set up a myMuscleTeam community and to add the e-mail addresses of families and friends you want to invite to participate. The site then automatically sends information to invitees about how to log on.
The person who sets up the community (the “coordinator”) maintains membership information, posts tasks on the calendar, and receives automatic e-mails when someone volunteers for a task. The site makes it easy to update friends and family simultaneously about medical events and life in general, as opposed to separately telling and retelling the latest news.
Friends and family can sign up for tasks, review their current commitments and avail themselves of their community’s private message board, photo gallery, resource section and Well Wishes wall. They also can reach out to potential new community members through the tell-a-friend link, which allows people to e-mail the coordinator asking to join the community. For privacy and security reasons, no one can join a community without the coordinator’s permission.
The myMuscleTeam website is administered by Lotsa Helping Hands, a private company that licenses its service to nonprofit associations like MDA, as well as to businesses wishing to offer the service as a benefit to their employees.
“It’s kind of like the old days of neighbors helping neighbors,” said Brooks Kenny, marketing director for Lotsa Helping Hands. “It removes the challenge of asking for help on both sides.” Volunteers report to Kenny that the site brings them “as much joy as it does relief” to the person needing assistance.
Amy McCord says that, for now, she is only using myMuscleTeam to coordinate her mother’s appointments, but it won’t be long before she’ll be using the site for herself.
“When I set the page up, I wrote on it that I might eventually need help with some time for me, you know, just to take a few hours off,” McCord said. “So far, I haven’t had to use it for that, but it’s nice to know it’s there.”