We all know those tasks that are never done. There is always more laundry to do, same with the dishes. And sure, the lawn mowing takes a break for the colder months, but come spring the grass will be growing again. Which is not to say that all tasks that are never done are necessarily unpleasant. Taking the dog for a walk can be enjoyable for both human and canine. Pulling weeds from the garden has a certain Zen attraction for many.
ALS advocates had reason to celebrate in December 2021 with the passage and signing into law of the Accelerating Access to Critical Therapies (ACT) for ALS Act, but there has been no time to wait as 2022 moves along with many policy priorities still on the table. For ALS advocates, there is always more to do.
Continue reading ALS Advocacy Efforts Roll On
There are times, for whatever reason, when the English language can be confounding. The examples of everywhere. We drive on a parkway and park on a driveway. This can apply to professions as well. Take for example, occupational therapy. That has to do with work, right? After all, “occupation” is right there in the name. And that’s correct, but only to an extent, because the role of an occupational therapist is that and so much more. In broad terms, occupational therapy focuses on a person’s ability to perform activities of daily living—to live life to its fullest. For people with ALS, an occupational therapist (or OT) is there to help patients maintain their independence for as long as possible as well as to improve their quality of life. The work an OT does can take on many forms as we’ll soon see, but in some ways their role can be summed up by this quote from the movie Patch Adams: “You treat a disease: you win, you lose. You treat a person, I guarantee you win—no matter what the outcome.”
April is Occupational Therapy Month, and what better way to mark the occasion than to hear from someone who knows the role of an OT inside and out: our Associate Director of Care Services Melissa Smith, who just so happens to be a licensed OT.
Continue reading Finding a Way—Occupational Therapists Are the Problem-Solvers of the Multi-Discipline ALS Treatment Team
Among the many confounding facts about ALS is that veterans are twice as likely as the general population to develop ALS. While there is no fairness in this, those who served our country have the right to expect we as a nation will serve them in return. As we honor those who have served on Veterans Day, we wanted to take some time to explore what services veterans with ALS can access, how they can access them, and what they’ll find at the John A. Cochran VA Medical Center ALS Clinic:
Continue reading Serving Those Who Served—Services Available for a Veteran with ALS
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.
Continue reading Living With ALS: Ken Danridge
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.
Continue reading Anndee Glick: Caring for our Heroes with ALS
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
Existing evidence supports the conclusion that people who have served in the military are at a greater risk of developing ALS and dying from the disease than those with no history of military service. Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military. In fact, a Harvard University research study tracked ex-service members back to 1910 and found that U.S. veterans carry a nearly 60 percent greater risk of contracting ALS than civilians.
Continue reading Veterans Face Higher Risk of ALS