In recognition of this year’s ALS Awareness Month with a theme of “Raise Your Voice” we’re sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fourth profile in that series.
“I don’t know how I would have done this without your guidance.”
Joumana Baroody heard words like these many times throughout the nine years she worked as a nurse at the ALS Clinic at the University of Chicago. They were spoken by people diagnosed with ALS and their families and caregivers.
They’re words Joumana often remembers before going to sleep at night, when she wakes in the morning, and which she keeps close to her heart as she continues to support the ALS community in her current role as a director of care services for The ALS Association Greater Chicago Chapter.
“We actually keep quotes from the people we serve,” said Joumana. “They’re kept in a folder and we share them with the entire chapter staff to remind us all of what we do every day and why.”
Nurses play a crucial role in supporting and advocating for people with ALS and their caregivers. Joumana recalls a time when one patient, a young man, came into the clinic alone and received his diagnosis with no support. Seeing his frightened and devastated state, she stepped in to comfort him.
That single moment established a bond between her and the young man that would endure for the next nine-and-a-half years; he passed away from ALS a couple of years ago.
“I ran into his wife last week, [and she] gave me the biggest hug and told me how much impact I had on her family,” said Joumana.
Although she’s no longer a practicing nurse, she still thinks and solves problems like one because it’s “innate in me.” One observation she made while serving at the ALS Clinic was the struggle caregivers experienced when navigating the landscape of necessary medical equipment and home care for their loved ones who are newly diagnosed.
“[After witnessing that,] we created a program called Caregivers’ Boot Camp,” said Joumana. Started last year, it’s a four-hour long intensive training session on how to use supportive devices and equipment, and how to give basic home care. Experts in mobility, orthotics, physical and occupational therapists, speech language pathologists, among others, were invited to give portions of the training in their respective fields.
“We also allow time at the end of each program for caregivers to do some hands-on work with the equipment,” added Joumana.
She said survey feedback of the training sessions has been overwhelmingly positive, but her team is also taking constructive feedback to heart. For example, some attendees said four hours aren’t enough to learn everything. So, they’re looking to lengthen the training but split it into two separate days, since attending more than four consecutive hours can put a strain on caregivers’ schedules.
When the Greater Chicago Chapter hired Joumana eight years ago, it was to play an important role in addressing gaps she saw at local ALS clinics, and to help start services that weren’t yet available to the community. But her most important responsibility, she said, is to speak up on behalf of those who can’t speak for themselves.
“When certain doctors don’t feel comfortable providing patients with new treatments, for example, the families will come to us and ask the chapter to speak to the doctors for them, to support their decisions,” explained Joumana.
It’s just one way she and her team at The ALS Association Greater Chicago Chapter raise their voices every day for ALS patients and their families.
In honor of ALS Awareness Month, please Raise Your Voice to elevate the fight against ALS for all people living with the disease. What can you do?
Raise Your Voice however you can. Together, we will be heard.