An interview with Angela Halpern from LSVT LOUD: From Passion to Purpose: A quest to empower people with Parkinson’s on February 23, 2024 by George Ackerman, Ph.D, J.D.
Biography
Ms. Halpern is an expert in voice/speech disorders and treatment efficacy research for people with Parkinson’s disease. She is the Chief Clinical Officer for LSVT LOUD and has been a LSVT LOUD faculty since 2004. She has been integral in the development of LSVT LOUD courses and the LOUD for LIFE program. She has been a speech-language pathologist for 32 years in a variety of settings and currently owns a private practice. As a part of the LSVT research team since 2000, she has authored and co-authored articles related to treatment efficacy research for people with PD and Down syndrome, as well as given presentations at numerous national and international conferences.
Please tell me a little about your background.
I grew up in a small town in Kansas. As a junior in High School, I observed a speech-language pathologist working with clients. During that day I was so moved by the power of helping people to communicate that I knew from that point, being a speech-language pathologist was the career I wanted to pursue. During undergraduate and graduate school I never doubted my career choice, and now after 32 years, I still love it!
Can you tell me more about your organization?
LSVT Global grew out of a clinical need to help people with Parkinson’s improve their vocal and movement abilities. Years of research and development led to the evidence based and effective treatments LSVT LOUD® for speech therapy and LSVT BIG® for physical and occupational therapy. LSVT Global is a vibrant company whose core goal is to deliver global access to treatments that inspire hope and transform lives for people with Parkinson’s and adults and children with other neurological conditions.
In addition to our commitment to clinical excellence, LSVT Global is deeply invested in education and training of speech, physical and occupational therapists globally.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to empower people with Parkinson’s by enabling them to regain their sense of self through improved communication. I began working with people with Parkinson’s early in my career and was frustrated by the lack of effective speech treatments available for these individuals. I then learned about LSVT LOUD, an evidence-based treatment developed specifically for people with Parkinson’s and became certified to deliver LSVT LOUD treatment in 1997. As I began to deliver LSVT LOUD I experienced so many “good goose bump” moments of my clients telling me how the treatment had changed their life and helped them regain confidence and their identity, that I was hooked. From that point on, empowering people with Parkinson’s by enabling them to effectively communicate their thoughts, ideas and feel like a valued communication partner has been the focus of my career.
Throughout my work with LSVT Global, I have been blessed to meet Parkinson’s warriors globally. These relationships have highlighted the need, in many communities, for basic education targeted at overcoming misperceptions and stigmatization of people with Parkinson’s as well as the need for equitable access to treatments. Thus, more recently, I have been a part of the World Parkinson Coalition, Building Global Alliance group. Our group is dedicated to trying to overcome some of these barriers, by developing educational programs for underserved communities across the globe.
What type of goals do individuals with Parkinson’s have when working with you?
The over-arching goal for clients that I work with is to help them improve their vocal loudness so that they can be heard and understood. We target a voice that is normal loudness with good quality (never too loud) that individuals can learn, through calibration activities to produce on their own. Many times, individuals make the heart-wrenching comments pre-treatment regarding how they have stopped talking because they don’t think anyone is interested in what they have to say, they feel ignored. What they often don’t realize, is that the lack of response isn’t based on whether they are interesting, but on the fact that people can’t hear them. Thus, when I start treatment, I find out who it is important for them to communicate with, and we directly target these situations. It is so rewarding when clients use their louder voice and come back to therapy excited that people paid attention to them and listened to what they had to say! They feel like a part of the communication world again!
What type of training and how long are the programs?
LSVT LOUD speech treatment is based on principles of neural plasticity and backed by research demonstrating that in order to make long lasting change:
- Treatments must be intensive. Thus, LSVT LOUD is four times a week for four weeks, one-hour individual sessions with speech therapists who are certified in the approach.
- The treatment must be salient: All reading and conversation activities utilized for LSVT LOUD voice practice are personal and salient to the individual that I am working with. Incorporating practice with “real-world” topics promotes better generalization outside of the treatment room. We never use standardized, cookie cutter workbooks.
- People need to “use it and improve it”. We directly target the hypokinesia of Parkinson disease by increasing loudness through a series of targeted high effort vocal exercises.
Finally, we know that in addition to the motor system, Parkinson also affects the sensory system. This results in a sensory mismatch. People feel like their quiet voice is normal loudness, and when we get them to normal loudness, they feel too loud. Thus, a large part of the treatment is helping people to calibrate themselves to the proper level of effort and loudness required to be heard and understood, and to feel comfortable with this increased vocal loudness.
What effect can it have on an individual with Parkinson’s?
Research and clinical experience both provide evidence of significant improvement in voice and speech as a result of LSVT LOUD. While the focus of the treatment is to help people achieve normal loudness to be heard and understood, research has also documented that not only does loudness increase, but there is also a spreading of effects to improvements in articulation, respiration, and intonation, all of which result in more intelligible speech. Additionally, research has documented changes in facial expression, neural functioning and preliminary data shows changes in swallowing following LSVT LOUD treatment.
What would you like to see as a future goal for your programs?
Increased access to LSVT Treatments globally.
What events do you participate in?
I am very active in the Parkinson community locally and globally. Locally, I am on the Board for the Parkinson Association of the Rockies, and I volunteer and fund raise for many Parkinson events. I provide educational presentations for support groups and Parkinson organizations nationally. Globally, I am Chair of the World Parkinson Coalition, Building Global Alliances team. As a part of this team, I have helped to develop educational programs for caregivers and people with Parkinson’s in underserved communities.
How does this also assist the caregivers?
LSVT LOUD speech treatment assists caregivers by enabling them to be able to communicate with their loved ones again. This enhanced communication decreases frustration and the need for repetition. It provides a mechanism for allowing people to reconnect as they share their ideas, opinions, memories and conversations about daily life. For a person with Parkinson to hear their loved one say something like, “That’s the voice I fell in love with” can be very motivating and rewarding!
I have also had caregivers tell me that, by seeing what their loved one was able to accomplish through improved voice and speech, it changed their perception of what their loved one was capable of in general.
How can someone get in touch? What is your website?
Angela.halpern@lsvtglobal.com
www.lsvtglobal.com
How can others also become advocates for awareness?
Advocacy can occur on many levels.
- I encourage people with PD to be their own self-advocate. Advocate with family, friends, health care professionals about their wants and needs. Through, this self-advocacy, awareness of the needs of people with Parkinson is raised. People with Parkinson are the driver of the bus, not the passenger.
- Become involved in projects locally, nationally or internationally that are focused on educating the public about Parkinson. This education can be a valuable step towards overcoming mis-perceptions, decreasing stigmatization, and showing how people with Parkinson are a vital part of the community.
- If you have the talents and capacity, advocate at the governmental level. Highlight the need for equitable treatment and access to medications.
In your opinion what is the key to effective advocacy?
Don’t be overwhelmed or feel like there isn’t anything you can do.
Think of the sweeping and significant impact that could be had if we all educated even one person about Parkinson and advocated for de-stigmatization and equitable access to treatments, and then that person educated someone else. The snowball effect of that would be powerful.
How can we better fundraise to support a cure for Parkinson’s?
It is important to combine efforts as a global community. Together we can be much more effective than many small entities all re-creating the wheel.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my mother-in-law has Parkinson disease.
If you had one song that would tell us more about you or represent your life which song would it be?
The Best Day of my Life by American Authors, especially this chorus of “I had a dream so big and loud!” I love this song because it is about positivity and always looking forward towards your dreams.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Spread love everywhere you go.” – Mother Teresa
“Never let the fear of striking out keep you from playing the game.” – Babe Ruth