ALS Connect

ALS and Frontotemporal Degeneration

It is a known fact that frontotemporal degneration (FTD) is connected to ALS and complicates an already difficult diagnosis. In light of World FTD Awareness Week, here are more details on the connection between ALS and FTD. Republished with permission from The Association for Frontotemporal Degeneration (AFD).

The discovery in 2011 that the C9orf72 gene mutation can cause both FTD and amyotrophic lateral sclerosis (ALS) has transformed a long held belief that ALS is ‘purely’ a movement disorder and that FTD is ‘purely’ a cognitive or behavioral form of dementia.

It is now recognized that the C9orf72 gene is the most common gene causing hereditary FTD, ALS and ALS with FTD. We now know that several other genes can also cause both diseases. FTD or frontotemporal degeneration is a progressive brain disease with changes in behavior, personality, and language dysfunction due to loss of nerve cells in the frontal and temporal lobes. ALS is a neurodegenerative disease with loss of upper (located in the brain) and lower (located in the spinal cord) motor neurons that leads to paralysis, dysphagia, dysarthria and eventually respiratory failure.

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Perspectives: On Caregiving

By Gregg Ratliff

Shortly after Nancy’s diagnosis of “Lou Gehrig’s Disease” I read on the ALSA website that “ALS is not just the patients disease, it is a family’s disease.” My care-giving perspective has allowed me to truly understand and validate this statement. Our family’s life changed dramatically over the seven years of Nancy’s illness. It strengthened some things, like our love, our resolve, our faith and our attitude control toward things we faced in life. I personally spend less time worrying and focusing on things I had no control over (which are most things in life). This provided me more time to focus on important and often overlooked things around me. My perspective changed tremendously. Joyce Meyer once said, “Your problem is not your problem. Your problem is your attitude toward your problem.” Marcus Aurelius said it this way, “Our life is what our thoughts make it.” So, anytime I began feeling sorry for myself I simply looked at my wife lying in the bed and said … “Gregg, you have no right to feel sorry for yourself. Be strong for her and yourself!” When I thought Nancy might be facing difficult times I would play music for her, read the Bible to her, pray for her, massage her feet and hands with lotion and remind her how much I loved and admired her.

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Perspectives: Sustineo Alas

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.”

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The Kimmswick 5k: A Family Honors Their Mother’s Memory

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.

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A Deeper Level of Understanding

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.
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Fighting in Memory of Grandma Ann

By Molly Cruitt

Earlier this summer, I got married at the church I grew up in, three days after my grandmother’s 78^th 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.

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The ALS Association Clinical Programs – Multidisciplinary Team Approach

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.

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