ALS Connect

Anndee Glick: Caring for our Heroes with ALS

Anndee Glick, MSN, RN, ANP-BC, is a nurse practitioner and clinical coordinator at the VA St. Louis, John Cochran Division’s ALS Multidisciplinary Care Clinic. During a recent Veteran’s Day recognition ceremony honoring veterans with ALS, Anndee addressed the audience of military heroes and their families. Following is the text of her speech.

“When I started taking prerequisites for my nursing program in the spring of 1998, my idea about what a nurse was and did were mostly learned by watching Major Margaret Houlihan from “MASH”. What I didn’t know when I enrolled in nursing school was that I had enlisted in Colonel Joyce Taylor’s Army. Colonel Taylor, known to me as Doctor Taylor, had served in a real-life “MASH” Unit during Desert Storm. The lady that I came to know as Joyce became my friend, mentor, and role model in nursing.

Portraits of ALS: Veteran Sean Nolan

In early 2016, Sean Nolan thought it might be time to amp up his workouts. The 46-year-old was feeling more tired than usual and experiencing some overall weakness. “I didn’t think anything of it,” he says. “I just thought I needed to go to the gym more.”

Months later, after his step daughter Jaylin pointed out some twitching in his arm, Sean noticed that his right hand was noticeably weaker. When he told his primary care physician about his symptoms at a routine physical, the doctor immediately referred him to a neurologist. Alarmed, Sean’s girlfriend of eight years, Nikki, started researching Sean’s symptoms online. Up popped sites describing ALS. “I panicked,” she says. But Sean was not convinced. “Everything I’ve read says that I’m an atypical age. The average age for people with ALS is mid-50’s. I’m ten years younger than that.”

Continue reading Portraits of ALS: Veteran Sean Nolan

Perspectives: ALS and Marriage

By Gregg Ratliff

I feel my wife Nancy was the hero in our family. I was just the parsley on the side of her dinner plate. According to estimates from the National Alliance for Caregiving, during this past year, 65.7 million Americans (or 29 % of the U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled relative. I was just one of many. I’m fortunate that God gave me a deep love for Nancy and a strength that went beyond my own capabilities. The person being cared for also plays a major role in the caregiver’s capabilities. Nancy’s personal qualities like her resolve, optimism, strong faith, love of life, love for family and love for people in general made my job easier.

Continue reading Perspectives: ALS and Marriage

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.

Continue reading ALS and Frontotemporal Degeneration

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.

Continue reading Perspectives: On Caregiving

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.”

Continue reading Perspectives: Sustineo Alas

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.

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