Helping ALS patients and their families is both fulfilling and tough, Cuth says. “The more I’m in the ALS clinic, the more we get to know families and patients and it’s hard because you know the outcome. There is no cure. We know what they are going through and what’s going to happen.”
At the ALS clinic, held one day a week, Cuth says those who remain mobile enough come to see a variety of caregivers, including a social worker, dietician, respiratory therapist, physical and occupational therapists, a speech therapist, neurologist and a neuropsychologist. There is a team mentality and clinic staff and ALS patients and their families form quick bonds. “To be invited into their lives at this horrible time. It’s incredible that they let us in, and we get to know them,” she says.
The Burtons cherish their relationship with Cuth and count her among their extended family. “She is so important,” Jalal says. “She goes the extra mile, and I don’t know what we would do without her.”
Bea says she, Jalal, and the entire family won’t “wallow in sadness” over Jalal’s condition. A techie before ALS, Jalal has embraced the communication technology and is making the most of it. Bea says the technology allows Jalal’s personality to continue to shine. He tells a visitor he used his personality and sense of humor to get Bea to marry him, drawing a hearty laugh and a smiling denial from Bea. Jalal sports a broad smile in return.
Jalal’s a man of faith. On one of the walls of his room, Bea hung supportive Bible verses to help with the tougher days. On the same wall are pictures drawn by their children in their younger days. One depicts Jalal earlier in his diagnosis when he used a walker.
Bea says Cuth is a “godsend” and always available, as is everyone with LVHN neurology. “I love the whole group. They really help you out,” she says.
“One doesn’t realize how important it is to verbally express oneself until you lose the ability to move, if that make sense,” Jalal says. “I am attached to the world through this computer. Otherwise, everyone is guessing what I need.”
Jalal’s ability to communicate has made a tough situation better, if just in one respect. “It is hard, don’t get me wrong,” Bea says. “But prayer, my mother and my family and friends, have been helping out a lot and that makes a difference.”