My interview with Samantha Elandary, Founder and Chief Executive Officer of the Parkinson Voice Project.
Biography
Samantha Elandary is the Founder and Chief Executive Officer of Parkinson Voice Project. She holds a BA in communication disorders and English and an MA in speech-language pathology from the University of North Texas.
Since 1999, Samantha has worked exclusively with individuals diagnosed with Parkinson’s and related movement disorders. She has devoted her life to making quality speech therapy accessible to this patient population.
Early in her career, Elandary recognized individuals with Parkinson’s responded remarkably well to speech therapy and vocal exercise, but they struggled to maintain their improvements. Patients who had the capability to improve were losing their voices, ending up with feeding tubes, and dying of aspiration pneumonia. The medical community attributed this to the progressive, degenerative nature of the disease. But Elandary came to discover this was not the biggest problem.
Since dopamine impacts motivation and drive – and people with Parkinson’s have lost 80% of their dopamine-producing cells – the desire to continue with speech therapy that could help is diminished.
With compassion and determination, Elandary set out to develop a comprehensive speech therapy program that would not only be effective in strengthening the speech and swallowing mechanism but would provide the support and encouragement this patient population needed to “stay the course.”
She created “The LOUD Crowd®,” a maintenance program consisting of speech and singing groups that also served as a support system for her patients and their families. People with Parkinson’s and related movement disorders were being treated at Elandary’s home. They would complete individual speech therapy and then attend speech and singing groups. would receive individual speech therapy, attend The LOUD Crowd met at Elandary’s home. In 2005, Elandary founded Texas Voice Project for Parkinson Disease, a nonprofit organization dedicated to preserving the voices of those with Parkinson’s. In 2011, the name of the organization changed to “Parkinson Voice Project” when the Board of Directors recognized the program could be replicated to help people with Parkinson’s beyond Texas.
Many ask what motivated Samantha to start Parkinson Voice Project. While she does not have a family history of Parkinson’s, she was born with a cleft palate and struggled with her speech from childhood until she was a young professional. She understands how vulnerable someone who has a communication disorder feels and how other people judge a person’s intelligence and competence based on the ability to communicate. She considers it an honor and a privilege to help people with Parkinson’s and regain and retain one of God’s most precious gifts.
Samantha is licensed in the state of Texas and is an out-of-state telehealth provider for the state of Florida.
Please tell me a little about your background and what got you involved with speech therapy.
I was born with a cleft palate and had many surgeries. I majored in Speech/Communications and received a graduate degree in speech pathology.
I am the founder of Parkinson Voice Project’s Founder. I was working in a Dallas hospital in the mid-1990s as a speech-language pathologist. While treating people with Parkinson’s, I recognized they made quick, remarkable progress in speech therapy, but they struggled to maintain the improvement. I had an idea…
What if people with Parkinson’s could receive ongoing speech therapy, encouragement, and support? Could they maintain their speech and swallowing, even though Parkinson’s is “progressive and degenerative?” I shared my thoughts with the hospital administration, but Medicare and insurance would not reimburse this level of care.
In March 2020, Parkinson Voice Project was forced to close its clinic and group program due to COVID-19. The Board, staff, and I were extremely worried about what would happen to our patients during the pandemic. Without consistent vocal exercise, speech and swallowing would diminish with Parkinson’s. In the same week as the “shut down,” we began offering Online SPEAK OUT! Home Practice Sessions Monday through Friday using Facebook LIVE. My clinical team and I quickly transitioned our speech therapy program to a telepractice and began providing SPEAK OUT! therapy online. Surprisingly, this act accelerated Parkinson Voice Project’s progress by an estimated ten years or more!
For more see https://parkinsonvoiceproject.org/about/history/
Can you tell me more about Speech Therapy for People with Parkinson’s?
40 years ago, we didn’t think the speech problems with Parkinson’s could be treated. Now we know it needs to be single-focused (using “Intent”). When people speak with Intent, they speak louder, clearer, and more articulately. They have more expression. They only need to focus on one thing. That’s what makes speech therapy different from working with other disorders.
Speech Therapy for People with Parkinson’s
Parkinson Voice Project is a 501(c)(3) nonprofit organization. We help people with Parkinson’s and related neurological disorders regain and retain their speech and communication. We want every person diagnosed with Parkinson’s to live full, connected lives with INTENT.
Our clinically proven SPEAK OUT!® program combines education with speech therapy and daily home practice, but it’s our lifelong group interaction that makes the biggest difference. We treat patients in our clinic and train speech-language pathologists and graduate students worldwide. We also provide free speech therapy workbooks and online speech and singing sessions for patients everywhere to enhance the treatment they are receiving at their local hospitals and clinics. Basically, we are collaborating with speech-language pathologists to help people with Parkinson’s receive the very best care.
Mission
To help people with Parkinson’s and related neurological disorders regain and retain their speech and communication while minimizing future swallowing complications.
Vision
To collaborate with other compassionate speech-language pathologists to make SPEAK OUT! accessible to people with Parkinson’s and related neurological disorders worldwide.
What is your passion and how did you get involved with speech therapy and aiding individuals with Parkinson’s?
We realized people with Parkinson’s could get better if they went through individual speech therapy and then had ongoing support and encouragement. The challenge was that Medicare wouldn’t pay for this level of care. After several years, we realized it had to be offered through the nonprofit sector.
What type of goals do individuals with Parkinson’s have when working with you?
The goals are to learn the exercises, establish a consistent home practice routine, train the care partner, and learn how to speak with “Intent” in conversation.
Parkinson Voice Project has developed a unique speech treatment to help patients regain and retain their speech and communication while minimizing swallowing issues. We offer this program to patients throughout Texas from our clinic and are teaching the protocol to speech-language pathologists worldwide through our online SPEAK OUT! Training Course.
What type of programs do you offer?
SPEAK OUT! is our program. The program we developed is a comprehensive program. Patients are evaluated, receive a workbook, attend our “Learn About Parkinson’s” Webinar, and receive individual speech therapy. To help people maintain the strength of their voices we offer online SPEAK OUT! Home Practice sessions and Parkinson’s Sing-Alongs that anyone from anywhere in the world can participate in. We receive emails and notes from people thanking us for the help they’ve received from our program. Alfred from Pennsylvania wrote, “Your service is a lifeline for me!”
During the pandemic, Parkinson Voice Project discovered the true impact of online therapy. Patients who previously did not have access to quality speech treatment could now improve their speech and communication. This included patients who lived in rural areas, the homebound, those who could no longer drive, and those living in nursing care facilities. Suddenly, Parkinson Voice Project could treat any person with Parkinson’s who lived in Texas, and we could help patients across the globe keep up with their daily speech exercises.
What effect can speech therapy have on an individual with Parkinson’s?
The ability to speak effectively and to swallow safely is a critical part of being human. The effects include being able to carry on a conversation with friends and family, maintaining your employment, and enjoying holidays and dinners with families.
What would you like to see as a future goal for your programs?
A future goal is our “Campaign to Reach America” to make SPEAK OUT! accessible to everyone in all 50 states.
By 2023, Parkinson Voice Project was hosting Online SPEAK OUT! Home Practice Sessions on our website, Facebook page, and YouTube channel with more than 3,000 participants each day.
What events do you participate in?
We have the “Parkinson Voice Advocates.” The “Advocates” are members of a volunteer group that speak at events and conferences.
In May 2022, Parkinson Voice Project launched its $20 Million Campaign To Reach America. This project will replicate Parkinson Voice Project’s ONLINE speech therapy program in 50 university speech therapy clinics across the United States (one in every state).
What type of education and training do you provide?
As a global leader in helping people with Parkinson’s and related neurological disorders to regain and retain their speech and communication, Parkinson Voice Project has a strong and growing education program. We offer educational webinars and resources for people with Parkinson’s and their families, as well as training and certification for speech-language pathologists.
How does this also assist the caregivers?
We use the term Care Partners for our “Caregivers.”
How can someone get in touch? What is your website?
https://parkinsonvoiceproject.org/ or contact@ParkinsonVoiceProject.org
Parkinson Voice Project will continue to work with INTENT until every person with Parkinson’s and related neurological disorders has access to our SPEAK OUT! therapy program.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
People with Parkinson’s can improve their speech and swallowing. It takes consistent vocal exercise and “INTENT,” but it CAN be done!