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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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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Techniques to Reduce Muscle Spasms

Our guest blogger this week is Christie Seidl, a massage therapy student from The Body Therapy Center and School of Massage in Swansea, Illinois.  Christie will obtain her MBLEx certification this August, and currently has her ASCP MLT certification and an associates degree in laboratory science.

For people with ALS, muscle spasms are a common and sometimes painful occurrence. Spasms and cramps are characterized by a sudden, involuntary contraction of muscles, and are the result of the ongoing disruption of signals from the nerves to the muscles that occurs in ALS.   There are four simple techniques you can use to help alleviate the pain and help stop the spasm.

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The Rudin Family Keeps on Truckin’ at the Walk to Defeat ALS®

When you attend a Walk to Defeat ALS®, you’ll be surrounded by hundreds of people who have been touched by this disease, each with their own story of how ALS has impacted their lives. Some are still fighting, and complete the route in their wheelchairs, next to an army of supporters cheering them on.  Some have lost someone special to the disease, but are committed to continuing the fight in memory of their friend or loved one.  All are warriors in the fight to defeat ALS.

Chatham, Illinois resident Ben Rudin was just 40 years old and the father of two young sons when he was diagnosed with ALS. He and his wife, Rebecca, participated in the Springfield Walk to Defeat ALS®, forming a team of family and friends to walk in support of a cure and to fund care for people living with the disease. An avid music lover and fan of the musical group, the Drive By Truckers, the family named their team, Truckin’ with Ben. 

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Nine Questions with Dr. Ghazala Hayat

Dr. Ghazala Hayat is board certified by the American Board of Psychiatry and Neurology and the American Board of Electrodiagnostic Medicine and has clinical neurophysiology certification by the American Board of Psychiatry and Neurology.  She is the director of Neuromuscular Services, Clinical Neurophysiology Fellowship and Clinical Neurophysiology Laboratory and the ALS Certified Center of Excellence at Saint Louis University.

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ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

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Don and Claire Bratcher: Imagining a World without ALS

ALS Association volunteers are a special breed of superhero — they are the heart and soul of this Chapter. They give up countless hours of their personal time to provide us with all manner of help – in the office, in the homes of people living with ALS, on our board of directors, as public policy advocates, on our committees, at our special events – without asking for anything in return.  

So many of our volunteers have been personally impacted by ALS, and have seen up close and personal the devastation the disease brings upon a family.  These wonderful people become volunteers to fight for a cure and to ensure that other families are supported physically and emotionally on their disease journey.

Two of those special volunteers are Don and Claire Bratcher, who have been ALS warriors and volunteers for close to 15 years.  Claire recently agreed to share their story and we’re delighted to post it here in her own words. 

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