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The Gary E. Shealy Memorial ALS Clinic in Tennessee has received a $75,000 grant from the <a href="https://www.als.org/">ALS Association</a> to support expanding its clinical care services for people with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS).
The clinic at East Tennessee State University (ETSU) Health is the only one in the state that offers free multidisciplinary care to ALS patients. Established in partnership with the ALS Association, it relies on voluntary work from different specialty clinicians, serving nearly 100 patients across thousands of visits.
The award, which coincided the clinic&#8217;s seventh anniversary, should help expand services to a full day, increase telehealth availability, help it acquire equipment to loan to patients, and continue educating care providers.
“This funding will go a long way in ensuring we are able to keep up with the increasing demand for services,” Courtney Andrews, professor and clinic coordinator at ETSU Health, said in a <a href="https://www.etsu.edu/etsu-news/2024/04-april/nave-center-shealy-als-clinic-grant.php">university press release</a>. “These services are critically needed in our area and we are committed to doing everything we can to improve the quality of life for those living with ALS in our region.”
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<h3>How ETSU Health&#8217;s ALS Clinic began</h3>
ETSU Health&#8217;s ALS Clinic was established in 2017 with a donation by Faith Akin, PhD, an audiologist at James H. Quillen VA Medical Center, after her husband, Gary E. Shealy, died from ALS in 2016.
Akin said she and her husband had to travel far to other universities to access an ALS clinic, just like other affected families in the region, making a local clinic where patients had access to specialized care urgently needed.
Akin expects the new clinic at ETSU would help reduce the burden on ALS patients and their families by providing coordinated care from several clinicians in one visit, instead of having to make multiple trips to different specialists.
The clinic is based on a multidisciplinary model to offer services from <a href="https://www.etsu.edu/crhs/als-clinic/provider-bio.php">a number of specialists</a>, including a neurologist, a nurse, and physical, occupational, respiratory, and speech-language therapists. It also offers services from a dietitian, a pharmacist, a social worker, an assistive technology professional, and an ALS Association representative.
The clinic is open to everyone with an ALS diagnosis every third Friday of the month from 12 to 4:30 p.m. For appointments, patients or caregivers can contact Andrews by phone at 423-439-4712, by fax at 423-439-4607, or by email at andrewscm@etsu.edu.
Because an ALS diagnosis is often made by excluding a number of other diseases, it offers a second opinion through a partnership with Randy Trudell, MD, whose main office is in Knoxville.
“The Gary E. Shealy Memorial ALS Clinic is a critical lifeline for those in our region seeking care for ALS, and we are incredibly proud to celebrate seven years of care with the support of the ALS Association,” Andrews said.

ETSU ALS clinic receives $75K grant to expand free care services

Last week I hit a milestone of sorts: my 35th <a href="https://www.als.org/support/certified-centers-clinics">ALS clinic</a> visit.
That&#8217;s not to say that medical appointments deserve the same recognition as birthdays or graduations, to be memorialized in a scrapbook. But because <a href="https://alsnewstoday.com/what-is-als/">ALS</a> has been a dominant part of my life for the past 14 years, I’ve created an imaginary scrapbook of ALS clinic visits. It’s filled with images and memories noting the evolution of my confidence to <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>.
Anticipating my first ALS clinic, I imagined it&#8217;d be similar to a sports clinic. A large room would be set up with stations where we patients would meet with clinic staff for testing and helpful information. A doctor would make a presentation, and we could mingle and meet the other patients.
Turns out that at an ALS clinic, patients remain in their exam rooms while the staff take turns to come in and chat. In three hours, I saw my neurologist, a speech therapist, a physical therapist, a respiratory therapist, and a dietitian. Whew! I was scheduled to return every three months.
Several visits (and scrapbook pages) later, I realized that the topics missing from every clinic discussion were rehabilitation and recovery.
[recommended-reading id=90333]
<h3>A new focus</h3>
My clinic is run by wonderful people who all have the best intentions for their patients. But to me, their assumptions are that my <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> will progress to my physical decline, so we spend time discussing <a href="https://alsnewstoday.com/aids-and-adaptations/">aids and adaptive devices</a>.
I know that ALS is a progressive condition, but I also know that my professional years teaching wellness and fitness gave me a vast repertoire of skills in mental positivity and adaptive exercise.
As I wrote in the column &#8220;<a href="https://alsnewstoday.com/columns/als-clinic-the-one-thing-to-always-bring-with-you/">The One Thing to Always Bring to the ALS Clinic</a>,&#8221; I decided to turn around these visits. Why not take advantage of having all those clinicians and their testing equipment in one room? I thought. Why not use them to help validate my at-home exercise and practice sessions? At each visit, I began asking, “What do you suggest I do to maintain where I&#8217;m at right now?”
That changed the game, and I’d leave the clinic with attainable goals and feelings of confidence.
The next few pages of my imaginary scrapbook are filled with fun anecdotes. I found humor everywhere, from <a href="https://alsnewstoday.com/columns/clinic-chair-humor/">the same old rickety chair in the exam room</a> to the physical therapist’s tests that made me feel like I were auditioning for “American Ninja Warrior.” I even imagined that <a href="https://alsnewstoday.com/columns/i-treat-my-als-clinic-like-olympic-challenge/">my ALS clinic was a mini-Olympic competition</a>.
A whole scrapbook page is devoted to when I was told I was maintaining my health so well that my appointments were extended to every four months and finally only twice each year. I believed I was helped by the opportunity to write my column for <a href="https://alsnewstoday.com/">ALS News Today</a>, moderate the <a href="https://alsnewstoday.com/forums/">ALS News Today Forums</a>, and meet ALS patients online from around the world. My confidence soared.
The most recent entry in my imaginary scrapbook of clinic visits is a photo of a smiling me. I left that appointment feeling grateful. I appreciated my doctor and her clinic staff and how they all played a part in helping build my adaptability, coping skills, and resilience.
That’s the thing about ALS: Each patient has a unique experience and life journey. I&#8217;m satisfied with mine; I’m living well with ALS. I believe you can do it, too.
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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Enjoying my memory scrapbook of visits to ALS clinics

“So tell us, Dagmar, what’s your latest project?”
The question came from my neurologist as we chatted during my recent <a href="https://www.als.org/local-support/certified-centers-clinics">ALS clinic</a> visit. She asked not only for herself, but for the medical student who was also in the room.
As I prattled on, part of my brain reflected on how after 12 years of clinic visits, I&#8217;ve become comfortable helping my doctor educate the many students who shadow her. The way I see it, sharing my perspective with medical students early in their education is a valuable way to help raise awareness of <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
Since at this visit, like previous ones, I didn’t have <a href="https://alsnewstoday.com/symptoms-of-als/">symptom changes</a> or questions for my doctor, we were able to spend the time in relaxed conversation.
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<h3>Fielding the queries</h3>
What type of questions do medical students typically ask me? Simple ones, like how my <a href="https://mobilitysaves.org/docs/orthotic-devices.pdf">ankle-foot orthoses</a> (AFOs) and rollator help me stay physically mobile, and not-so-simple ones, like how I keep my positive attitude after 12 years of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
But even when discussing my AFOs and rollator, I feel it’s important to add that maintaining my physical fitness when not using them contributes to my ability to use them better. This opens the door to talking about how ALS changes the way I exercise. Instead of long, tiring periods of daily exercise, I do <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">several preplanned sequences</a> throughout the day.
Plus, when the clinic physical therapist gives me exercises to help improve my gait or maintain my strength, I go home and do them. I don’t do them for three days and quit. I add the recommended exercises to my daily to-do list and check them off when completed.
“So many patients just give up and quit,” my neurologist added. “I know our clinic staff appreciates knowing that patients follow through with our recommendations.”
<h3>Creating reasons to live</h3>
This segues into the second question, involving my ability to keep a positive attitude. I point out that AFOs and rollators are wonderful, but unless I can find meaning or <a href="https://alsnewstoday.com/columns/living-purpose-projects/">purpose in my life</a> — giving me things to do, people to see, and places to go — these adaptive tools are of little benefit to me.
My motivation comes from having projects and events on my calendar, things that I can spend time planning and look forward to completing.
I turned to my neurologist and said, “You asked me what my latest project was. Well, this clinic visit is it! Because as you know, <a href="https://alsnewstoday.com/columns/i-treat-my-als-clinic-like-olympic-challenge/">I treat my ALS clinic like an Olympic challenge</a>!”
“And then,” I added, “when I go home, I’ll give myself a <a href="https://alsnewstoday.com/columns/als-obstacles-revive-daily-life-routines/">few days to recover</a>, look at my to-do list, and get to work.”
<h3>A few more reflections</h3>
I know I’m only one of the many ALS patients the medical students are able to meet during their clinic visits. We each have a unique journey with ALS, a different story to tell, and varied <a href="https://alsnewstoday.com/social-clips/six-coping-strategies-for-als/">coping strategies</a>.
But I believe that while we&#8217;re learning to live well living with ALS, we should also take advantage of every opportunity to raise awareness along the way.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

How I raise ALS awareness, even at my ALS clinic

While my late husband, Jeff, was <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, there was a place where we both felt supported and hopeful, his disease understood.
Driving through the streets of Baltimore as we wound our way toward the <a href="https://www.packardcenter.org/what-is-als/als-clinic-at-johns-hopkins/">Johns Hopkins ALS Clinic</a>, I could&#8217;ve felt trepidation, as sometimes on clinic day we’d get difficult evidence of his disease progression. Instead, what I usually felt was a sense of calm and being well cared for.
An <a href="https://alsnewstoday.com/what-is-als/">ALS</a> clinic day is a multidisciplinary appointment that convenes an individual’s care team into one location. On clinic day, Jeff and I would remain in one exam room while his neurologist, speech pathologist, and respiratory, occupational, and physical therapists would visit us on rotation. Through this approach, Jeff’s care was integrated and specific to his needs.
Through the clinic, he enrolled in a trial for what I later learned was <a href="https://alsnewstoday.com/news/phoenix-trial-approved-als-therapy-relyvrio-amx0035-enrolled/">Relyvrio</a> (sodium phenylbutyrate and taurursodiol). We learned methods to sustain his faltering speech. We explored mobility options before his gait became unsteady. And just as importantly, his emotional well-being was paramount.
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I loved clinic days, and I think Jeff did, too. At clinic, Jeff was a person more than a patient. Our team showed boundless respect for him as an individual, focusing on his dignity, wants, and feelings. They displayed compassion and support for me, his <a href="https://alsnewstoday.com/columns/als-caregiver-husband-cant-call-sick/">caregiver</a>, too.
Through my experiences over the past four years as a volunteer advocate with <a href="https://iamals.org/">I AM ALS</a>, I learned that Jeff and I were fortunate. Many other families have equally satisfying experiences with their ALS clinic, but some don&#8217;t. Clinic attendance can be a function of geography, veteran status, or preference. Some families have multiple options, and many have none, as deserts of care exist. Clinic locations in such places are sparse or nonexistent, precluding attendance for many people.
To help families find the clinic that best meets their needs, my friend Kylan Morris is seeing through a promise she made to her mom, <a href="https://iamals.org/stories/sandy-morris/">Sandy Morris</a>, who was a powerhouse advocate best known as a driving force behind the passage of <a href="https://www.mda.org/press-releases/three-leading-als-organizations-celebrate-president-biden-signing-the-act-for-als-into-law">ACT for ALS</a> and the <a href="https://morrisalsprinciples.org/">Morris Principles</a>, among many other advances in quality of life for people living with ALS.
<figure id="attachment_82198" aria-describedby="caption-attachment-82198" style="width: 256px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-82198 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/02/Kylan-and-Sandy-256x380.jpg" alt="This photo features head-and-shoulders images of two blonde-haired women. The one on the left is in a white tank top and wears a subtle necklace; the other appears to be wearing an orange-red top." width="256" height="380" data-wp-pid="82198" /><figcaption id="caption-attachment-82198" class="wp-caption-text">Kylan. left, and her mom, Sandy Morris. (Courtesy of Kylan Morris)</figcaption></figure>
Using <a href="https://eyegaze.com/">Eyegaze</a> technology alone, both Sandy and <a href="https://storymaps.arcgis.com/stories/936775e4a35b4cfaaa71877af2df9ff0">Pat Dolan</a>, a world-class geographer living with ALS, began creating the <a href="https://als-geospatial-hub-nonprofit.hub.arcgis.com/pages/r1-community">ALS Clinic Experience Survey</a> to help others locate a nearby clinic, identify gaps in care, and share their experiences with other people living with the disease. This starting point for <a href="https://alsnewstoday.com/als-diagnosis/">newly diagnosed ALS families</a> also helps them approach their first clinic visit with confidence, prepared with questions to ask and informed by the real-life experiences of other ALS families.
<a href="https://www.sierrasun.com/news/obituaries/obituary-sandy-morris/" rel="nofollow">Sandy exercised her Medical Aid in Dying wish last August</a>, surrounded by her family on their deck overlooking the Sierra Nevada. Before doing so, she asked her only daughter to pick up the baton. It was just two weeks after Sandy had started the project.
“Mom prepared me to carry on leading a team of amazing advocates known as the R1 crew (for Rogue One) to create and ensure that the ALS Clinic Survey became a useful tool for the ALS community,” Kylan tells me by email. Keeping her promise, Kylan, together with Pat and the R1 crew, have since seen it through. (Full disclosure: I&#8217;m also a member of the R1 crew.)
Launched at the end of last year, the survey already has nearly 200 completed responses. The R1 crew’s goal is 500 or more to achieve a comprehensive results dashboard for people living with ALS, so that they can make the most informed decision about which clinic they choose to trust with their care journey.
“Mom spent so many late nights researching every life-preserving detail that the internet and other resources had to offer so that she could stay with my family as long as she could,” Kylan says. “The survey allows people living with ALS to start with this invaluable information, as people living with ALS are the experts in their own disease.&#8221;
Kylan continued, saying, “The ultimate goal is to create transparency to the level of care that is being provided at an ALS clinic, for both individuals and clinic staff. Clinic staff will have access to the insights and real experiences of people living with the disease that are attending their clinic, and have an opportunity to reply to experiences specific to their clinic that will be displayed in the results dashboard.”
If you’re newly diagnosed, the <a href="https://nonprofit.maps.arcgis.com/apps/dashboards/1ede8c4bdf57440f999d21d89298d9d2">ALS Clinic Experience Survey dashboard</a> will help you to navigate an often challenging time by helping you to choose the clinic that best meets your individual needs. If you’re already enrolled in a clinic, <a href="https://als-geospatial-hub-nonprofit.hub.arcgis.com/feedback/surveys/370b98c9d0d84f148c583c5cebf65807">please consider completing the ALS clinic survey</a> and sharing your experience with others.
Your story matters and will further us in the fight against ALS.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: ALS Clinic

ETSU ALS clinic receives $75K grant to expand free care services

Enjoying my memory scrapbook of visits to ALS clinics

How I raise ALS awareness, even at my ALS clinic

Finding hope, expertise, and compassion — and an ALS clinic