ALS Connect

Walk a Crooked Path: The Big Bad Wolf and the Three Bears

By Saundra Stewart

Not so long ago in a land not so far away lived a brave, strong man and his white-haired wife. They loved their little blue cottage on the hill. They loved playing with their grandchildren, going for long bicycle rides, and camping – especially camping!

One day, life was going along much as normal, when there came a knock on the door. When the brave, strong man went to answer, there on the porch stood a big, ugly, horrible wolf. On the front of his sweatshirt were the letters “ALS.” The man didn’t know what that meant, but he knew the creature was one of the ugliest things he had ever seen! Right behind the wolf were three bears. Big bears. Scary bears.

ALS Reflections from Outgoing Board Chair Dave Van de Riet

At the end of this month, Dave Van de Riet will complete his term as chair of The ALS Association St. Louis Regional Chapter’s Board of Directors. Over the past six and a half years, Dave’s leadership has been characterized by innovative ideas, strategic thinking and an overwhelming commitment to providing quality care to families facing an ALS diagnosis. His energy and passion for the mission will be difficult to match, but he leaves us a better organization and on strong footing for the future.

Dave will continue to serve people with ALS and their families locally in his role as the St. Louis Walk to Defeat ALS® Chair; as a member of the fund development, finance and executive committees; and in a national capacity as vice chair of The ALS Association’s Governance Committee and member of the Board of Representatives.

Thank you Dave, for your extraordinary leadership and tireless dedication to our mission and the people we serve.

In this post, Dave reflects on his tenure as Board Chair.

Back in July of 2012, I was honored to become the board chairman of the ALS Association St. Louis Regional Chapter. I had no idea what kind of journey it would be. Certainly, I had some idea of the responsibilities, the meetings and the commitment. I had the pleasure of serving as Vice Chair while watching past Chair Rick Palank ably lead the Board and along with our President/CEO – Maureen Barber Hill – establish a very strong foundation for the stability and success of the Chapter. What I didn’t know, however, was how much the job could change me.

Living With ALS: Ken Danridge

Ken Danridge was just 56 years old when he was diagnosed with ALS. Married for 13 years to his wife Amy, Ken is the father of three young children – Blake, Maya and Addison. Ken also served in the U.S. Air force for nearly 20 years and was stationed in Oklahoma City during the terrorist bombing in 1995. With the muscles in his body progressively weakening, Ken now uses a motorized wheelchair to get around, a feeding tube to eat, and a ventilator to breathe. Despite the many limitations ALS has imposed on his once active lifestyle, Ken remains a beacon of positivity, intent on using his diagnosis to connect with others with the disease and influence and motivate the people around him. Below, Ken shares his philosophy on living with ALS.

Greetings, my name is Ken and I have ALS. I was officially diagnosed in March of 2017, but I had symptoms for about two years prior to the confirmation. I didn’t really think much about the periodic loss of fine motor skills in my left hand, but when I developed a dropped left foot I became concerned.

Perspectives: On the True Gifts of Christmas

By Gregg Ratliff

Occasionally, Nancy and I would experience a rough emotional week. Most of the time when my dear wife displayed more tears than usual, I did not allow it to influence my own disposition. Some days she was able to communicate with her eyes and some days she was not. I remember one particular December day when she could move her eyes to communicate with me she told me that she was feeling “sad” and “depressed.” Of course, that broke my heart! On days like this I would vary our daily activities in an attempt to avoid the “routine” and pick up her spirits. For example, I would play audio book for her, downloaded some music and read to her more than usual, all of which seemed to help – some. The Christmas season was always Nancy’s favorite season and I suppose her inability to “experience Christmas” by shopping, having a “tea party” with her girlfriends, and just generally participating in the hustle and bustle of her favorite season affected her normally cheerful attitude. Nancy’s “love language” was gift giving.

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