Today’s blog post is the first in a recurring monthly series from our good friend Gregg Ratliff. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years, all while still actively fundraising and advocating for people with ALS and their families. In his series, “Perspectives: It’s All in How You Look at it,” Gregg will share his insights on ALS and the impact it has on families.
By Gregg Ratliff
Those of us that have met the curse of Amyotrophic Lateral Sclerosis face-to-face whether it is first-hand as a patient, second-hand as a caregiver or so-called third-hand as a friend or family member we know the cruel reality of this scourge! This disease slowly strips away most of the vestiges of life – movement, speech, swallowing, breathing, self-care and freedom. Yet, the mind and feelings remain totally intact. How fair is that? As my children know one of my sayings to them when they were growing up was “Life is not fair.”
Continue reading Perspectives: Sustineo Alas
By Jason Ratliff
The Kimmswick 5K is held in memory of Nancy Ratliff, who touched many people’s lives as a daycare teacher and director, Montessori school teacher, dedicated wife and profoundly loving mother, grandmother and friend.
Our family was turned upside down in the summer of 2009 when, at the age of 61, Nancy was diagnosed with ALS.
Continue reading The Kimmswick 5k: A Family Honors Their Mother’s Memory
By Heather Burns, MSW, LMSW, ALS Association Care Services Team Manager
I thought I had a good grasp of the psychological impact of ALS, until I temporarily lost the use of my right hand. I am a south paw, but the inability to use both hands in the way I am accustomed to using them in my almost 31 years of life has been proven to be quite the learning experience.
After returning home from the emergency room, to be greeted by a sink full of dishes, is when the reality of my temporary disability set in. I always strive to have the dishes done before I go to bed. It’s a personal goal. I stood there, hunched over the sink in tears, that I wasn’t able to accomplish this task. My significant other came in and assured me he’d take care of them. But that didn’t make me feel better as I slouched off to bed.
Continue reading A Deeper Level of Understanding
By Molly Cruitt
Earlier this summer, I got married at the church I grew up in, three days after my grandmother’s 78th birthday. My grandmother wasn’t there.
It’s been almost a full decade since my grandma lost her battle with ALS plus dementia, and it’s easy to get lost thinking of all the things she’s missed and the moments that will continue to happen without her present.
Continue reading Fighting in Memory of Grandma Ann
The ALS Association St. Louis Regional Chapter collaborates with many experienced ALS clinicians across eastern Missouri and central and Southern Illinois to help ensure people living with ALS have access to specialized care. The ALS Association’s Certified Treatment Center of Excellence at Saint Louis University, The ALS Treatment Center at St. Francis Medical Center in Cape Girardeau, the John A. Cochran VA Medical Center, and the Neuromuscular Clinic at Washington University School of Medicine, provide compassionate care in a supportive, family oriented atmosphere. This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison, and can provide a dynamic, individualized diagnosis, anticipatory guidance, and care planning. The multidisciplinary clinic staff provides the nexus between the patient, their family and caregivers, and the medical community.
Continue reading The ALS Association Clinical Programs – Multidisciplinary Team Approach
By Josh Rogers, Senior Vice President & Partner, FleishmanHillard
A few weekends ago, I was jogging past Steinberg Rink in Forest Park and I remembered the first Walk to Defeat ALS® that I attended. The Walk started and finished at Steinberg. That was 2005 or 2006, I think. I participated in two Walks at Steinberg. Then the event shifted to the Forest Park Visitor’s Center. And this year, we’re moving again to the upper Muny parking lot.
Each location to date has served us very well as the event has grown. And I know our new spot will be great too. Forest Park is such a wonderful institution … it’s impossible to go wrong with an event in the park.
Continue reading Josh Rogers: Why I Walk to Defeat ALS
By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter
Although I think of my dad often, Father’s Day always brings with it a special pang of sadness. It’s been 25 years now that I have not been able to spend Father’s Day with him — he lost his battle to ALS in September of 1992. As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives. My kids never got the opportunity to know what a great man he was. My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.
Continue reading After 25 years I’m Still Fighting Against ALS