ALS Connect

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