In the journey with ALS, a good support network is essential. Friends, family and willing volunteers make life easier and sweeter in so many ways.
But coordinating such a network can seem like one more job on an overflowing “to do” list. It takes time and effort to keep people informed and to connect vague offers of help to actual tasks.
To address this problem, MDA has launched myMuscleTeam, a free online service that helps MDA families experience the strength and support that comes from their community — or “Muscle Team” — of friends and family.
Available at mymuscleteam.lotsahelpinghands.com, myMuscleTeam allows individuals with ALS and their family/caregivers to create private and secure Web pages that serve two primary functions: communication and care coordination.
Communication: On myMuscleTeam, users can post photos and journal entries that keep their support network updated on medical matters and life in general. Users only have to post once to reach multiple recipients, as opposed to telling and retelling the latest news to separate individuals. Because the site automatically sends out a notice whenever an update is posted, it also is helpful to those who worry about “bothering you” with questions, but who want to stay up-to-date and aware of your changing circumstances. The end result: Your support network grows stronger with less effort on your part.
Care coordination: A care coordination calendar enables users to post items for which assistance is needed — such as transportation to medical appointments, meal preparation, shopping, household chores and more — so family, friends and others from your personal “Muscle Team” can sign up to help. Privacy and security settings ensure that you control which people are permitted access to the calendar. An automatic reminder e-mail is sent to those who have signed up to help. This calendar is the perfect answer to the oft-asked question “What can I do to help?”
As you look ahead to the new year, take a moment to check out myMuscleTeam and put it to work for you!