“LSVT LOUD therapy has literally given me my life back.”

LSVT LOUD Improved Outcomes for a Speaker with aBductor Laryngeal Dystonia

By Mindy Schnell, MS CCC-SLP, CDP, LSVT LOUD Certified Clinician

Mindy shares her story along with her client, Meredith, about how LSVT LOUD improved voice and communication for ABductor laryngeal dystonia (ABLD). Both Mindy and Meredith are passionate about sharing their success story in the hopes of helping other individuals suffering with ABLD.  Watch the video and read their story!

How did you learn about LSVT LOUD?

Meredith (client): My voice started to act “odd” in 2017. By the end of my shift as an RN, it had a breathy quality, especially on the phone. Treatment for acid reflux and allergies netted zero improvement. In 2019, I put my career on hold, in great part, due to the difficulty of working with an unreliable, “sick sounding” voice. A month later, a voice-specialist ENT diagnosed me with a rare neurological disorder, abductor laryngeal dystonia (ABLD). I saw a recommended speech pathologist right away, but the most she could offer me was support resources and an education on my condition.  With a busy home life and then the pandemic, all treatments went on hold. In this time, my voice declined to the point that air was just escaping whenever I tried to talk.

My speech was exhausting, unintelligible, broken and breathy. Feeling functionally mute and with NYC’s finest doctors in my backyard, I was desperate to seek expert treatment. In 2021, I had staged Botox injections from the MD who invented the treatment, with zero improvement. In the months leading up to what would have been my second round of injections, I saw a movement-disorder neurologist on the recommendation of the ENT. I was crushed when she told me that no medications would work for me, as I had no other neurological deficits. She did, however, recommend LSVT LOUD voice therapy, as she had seen it “really help” other patients with ABLD. What? This was new. Did she forget that I had the really rare, difficult-to-treat form of laryngeal dystonia, ABLD? I asked her in disbelief, to kindly repeat her recommendation and that it was specific to ABLD. It was.

How did you approach preparing for a client with ABSD?

Mindy (clinician): Meredith found my contact info on the LSVT Global website list of certified clinicians in her local area. Through email correspondence, she inquired about therapy and explained her voice diagnosis, poor functionality, and the referral by her neurologist. I searched through the vast LSVT LOUD research for application of this program to other neurological disorders but did not find a study for treatment with LSVT for laryngeal dystonia. The Dysphonia International website did not contain research in voice therapy for the abductor type either.

Before accepting this client, I reached out to Angela Halpern, MS, CCC-SLP, Chief Clinical Officer at LSVT Global to see if she or any of the team at LSVT headquarters or internationally certified clinicians had experience with this diagnosis, and if there were any contraindications to consider. Angela put out feelers and replied that other SLPs had inquired about this application but the outcomes were unknown. She recommended initiating the treatment and re-evaluating after the first week for tolerance and prognostic indicators.

What were her outcomes?

Mindy (clinician): Our clinic was still treating remotely so the evaluation and subsequent therapy were conducted via telepractice. I was trained in tele LSVT LOUD and was finding it to be quite successful with my other clients. However, Meredith’s aphonic voice was not picked up within the Zoom platform, which was concerning for practical purposes. Since we had corresponded via email and she provided her medical records, a verbal history was not necessary for the intake. So, we dove right in with the exercises.

Her initial attempt at sustaining vocalization produced sound, but the duration was only 4 seconds. By the end of the first week, she was averaging 15 seconds, but the spasms caused fluctuations that she called her “Tarzan voice”. She always put forth great effort and felt exhausted, like after a healthy workout. She consumed water throughout the exercises and reported no vocal pain or strain as my team and I repeatedly checked-in.

We jointly decided to keep going and by the end of week 2 she had met the clinical goals we had set and branched up her targets. She was doing the daily homework and feeling optimistic, although her functional phrases and sentence productions continued to have frequent, intermittent dysphonic breaks. Tapping into my past experience with vocal fold paralysis, I incorporated glottal closure techniques and encouraged her to move quickly past the voiceless consonants and get right to the vowel, where her voice was less affected by spasms.

Her voice continued to get stronger. By the end of week 4, Meredith’s set of “ahs” reached 20 seconds with good loudness and consistency (with effort reported as EASY) and with no notable spasms. Her vocal pitch range, initially 213-553Hz, expanded on both the low and high end to 147-830Hz.

As Meredith progressed from words/phrases to sentences, paragraphs, and conversation, her abductor spasms gradually decreased in frequency and severity within her production of voiceless consonants. Vocal volume was consistently within the normal range.  Most importantly, she came to therapy each day with another “first” functional speaking act in 18 months time, such as calling to her children in another room, answering the phone, speaking with a neighbor, making an appointment, and ordering a meal.

What do you feel motivated you during the most challenging aspects of the therapy?   

Meredith (client): I could see my neurologist’s masked face, looking me square in the eyes and telling me (twice) that she had seen LSVT LOUD therapy work on ABLD. I had to trust her expertise and the therapy itself. The past year and a half has been devastating. I didn’t want to walk away after a month of LSVT LOUD saying, “Oh, another thing that didn’t work, poor me,” if I didn’t give it 200% and every last fiber of my effort. I also  had the sense that Mindy and her team were in it with me, all the way. Although done remotely, the huge clock they threw on our shared screen got me through those “AAAAAHs” and their cheering hands were ever-encouraging. They were the Mickey to my Rocky Balboa. I was in the fight to reclaim the future I had always envisioned for myself. Voicelessness was not part of the plans. Sorry. 

How has LSVT LOUD improved your quality of life? 

Meredith (client): Before LSVT LOUD, I would say I was in the depression stage of grieving, for my lost voice. Speech touches every aspect of one’s life—your function, identity, livelihood and self-expression.  To have it disappear from a disorder of unknown etiology, without any effective treatment (so far), was horrific. LSVT LOUD therapy has literally given me my life back. My voice isn’t perfect, but you’d be hard-pressed to know that I even have ABLD. I am able to talk freely, keep my nursing certifications current and most importantly, nag my teenagers and husband. After a year and a half, I have a lot of catching up to do! I am Heard and I am Grateful. 

What would you like others to take away from this post?

Mindy (clinician): My client felt so elated with her outcomes that she wanted to spread the word! Her neurological voice disorder has not been cured, but positive, functional changes resulted from the intensive LSVT LOUD program. Our hope is that future research will support the application of LSVT to the ABLD population as a functional treatment approach.

*I want to give a shout out to Meredith’s talented team of LSVT certified graduate clinicians: Alexandra, Jillian, and Dana. Being trained in LSVT and providing supervised therapy as a student has not only increased their knowledge but has fostered an assertiveness and confidence in providing skilled therapy early in their training. Additionally, these students will have an opportunity to present a poster session of this case study at our state convention in the spring.

Thank you to LSVT Global for providing this platform of information.

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