When Bob McDonald was diagnosed with Amyotrophic Lateral Sclerosis, he and his wife, Anita, set a goal:
Though the average life span for a patient with ALS — also known as Lou Gehrig’s Disease — is two to five years, the couple talked with his doctor and decided to shoot for a decade.
With hope, love, excellent care and support, they defied the odds for almost nine years before Bob succumbed to the disease in June 2016.
“We set a target for us to aim for and as we went through the disease progression and experienced various changes, it gave us greater hope. We needed that hope because we could go on trying to live our lives and not be worried about tomorrow or the next day or two years down the road,” said Anita McDonald, who will be the guest speaker at the Fourth Annual Bite Nite Tucson, which benefits the nonprofit ALS Association Arizona Chapter.
Hope is at the forefront for patients with the rapidly progressive neurodegenerative disease in light of the FDA approval this month of edaravone, brand name Radicava, the first drug to treat ALS in more than 20 years.
“It has had mixed reviews at clinical trials, but after six months of treatment those who received it experienced 33 percent lesser decline in their rate of physical function compared with those in the placebo group,” said Amy Frank, care services director for the ALS Arizona Chapter. “It is exciting because it gives us hope that the efforts toward fundraising and funneling money into research are making headway and those working to discover treatments and a cure are making progress.”
Additionally, last December Barrow Neurological Institute and IBM Watson Health identified five new genes linked to ALS, providing researchers with new insights into the disease that gradually robs those impacted of the ability to walk, speak, move and breathe. Frank said the genetic research is expected to pave the way to new drug therapies.
On the local level, the ALS Association has expanded its free services and support for those living with ALS and their families to include a monthly children’s support group in Tucson.
The program is designed to provide support to any child with a parent, grandparent or loved one suffering from ALS and complements the Family Connections program, through which families come together to share meals and other social activities.
“These kids are watching a loved one progressively become paralyzed to the point of death and this lets them have someone with whom to share their thoughts, feelings and fears and get appropriate, educated answers about what they are seeing,” said Frank. “It provides a safe space to ask questions and connect. Lots of kids, especially if they are in middle school or older, end up providing a certain level of care for a parent with ALS — whether it be feeding or hooking him or her up to a breathing machine or helping with exercises — since it requires 24-hour care.”
Caregivers often travel a unique journey alongside patients, according to McDonald, who retired from her position as chancellor of Penn State DuBois in 2012 and became her husband’s primary caregiver.
“I found myself doing things I never dreamed I would do and learning things I never knew existed. I always said it was a good thing I was a chancellor when it came to the organization aspect since there is so much management of medications, appointments, care and services that goes along with the emotional aspects of dealing with ALS as well as maintenance of the house and other parts of life,” McDonald said.
She said that quality of life was always a priority for Bob, a veteran who enjoyed a long career in human resources before retiring as a vice president for the DeGussa Corp. in 2004. Even after his ALS diagnosis, he worked as a consultant for Bunge Ltd. until 2013.
“His mind was totally active and he continued to stay engaged and this gave him a purposeful existence. We are old school, and he had a great work ethic. He always felt he had a responsibility to take care of his family, so it was important for him to work and contribute to society. His love for his family also gave him a lot of motivation to live,” McDonald said.
She said they both found purpose through the ALS Association, which provides advocacy, education and support for 400 patients and their families annually throughout Arizona. The organization also offers programs that provide equipment loans, respite and transportation in an effort to offset the devastating expenses of ALS, which routinely reach $200,000 per patient annually.
“Bob didn’t want to go initially to the ALS Association, but I convinced him and we met wonderful people. He was able to provide experiential input and suggestions on how he handled things with ALS; he was able to help others from his personal experiences and that made him feel good,” she said.
From McDonald’s point of view, the ALS Association became an unwavering source of support regarding everything from the extreme emotional and physical demands of caregiving to providing advice about the best available equipment as the illness progressed.
“I am not sure I would have been able to get through everything without that group. You could talk about what you were experiencing and didn’t have to worry about being judged about how you handled things. People shared advice and the ALS staff offered suggestions and resources for equipment needs and other assistance,” she said.
McDonald said the relationships she formed through the ALS Association remain central in her life — she serves on the board of directors and has helped to launch an ALS survivors group to help people cope after the loss of a spouse or loved one.
While she remains busy with commitments to the ALS Association, the Catalina Rotary Club of Tucson and the couple’s three children and six grandchildren, adjusting to life without Bob has been challenging.
“After he had ALS for so long, I lulled myself into the thought that he would be the exception and keep going and live a normal life span, but in 2016 it became clear that was not going to be the case. But I have so many good memories of being able to be here with Bob and my family and I am grateful. I thank God I was able to do it,” McDonald said.
She hopes that her family’s story will motivate others in the community — including all of those who have been caregivers in some way, shape or form — to help raise funds to continue research into treatments and a cure for ALS.
“After Bob’s diagnosis with ALS, we were in total disbelief. Then we tried to do anything we could and participate in studies in hopes that there would be a cure or something would come along to help him live longer. I think the new drug is inspiring new hope,” she said.
