An interview with Esther Grote from Defy Parkinson’s on July 13, 2023 by George Ackerman, Ph.D, J.D.
Biography
In 2023 I founded Defy Parkinson’s, a holistic platform catering to the needs of individuals with Parkinson’s disease. Through this initiative, we provide a comprehensive range of resources, support, and information to empower and uplift those living with Parkinson’s. Defy Parkinson’s aims to enhance the quality of life for individuals with the disease by addressing their physical, emotional, and social well-being.
Since 2006, I have been working as a Speech and Language Therapist in my own practice in Berlin, specializing in treating neurological disorders, primarily Parkinson’s disease and ALS. I provide palliative and hospice care as well, ensuring comprehensive support for my patients. It brings me great joy to assist individuals in their fight against these conditions and help them improve their communication abilities.
From January 2019 to August 2019, I had the opportunity to engage in freelance work at the neurological rehabilitation clinic “Median Klinik Berlin.” During this period, my focus was on treating speech, voice, and swallowing disorders in individuals recovering from strokes. It was a rewarding experience to be part of their rehabilitation journey and witness their progress.
Prior to that, from 1997 to 2006, I worked as a Speech and Language Therapist at a speech therapy practice in Potsdam, where I handled a diverse range of cases addressing various speech and language disorders.
In terms of education, I completed my training as a state-certified Speech and Language Therapist at Charité Berlin from 1994 to 1997. This comprehensive program equipped me with the necessary knowledge and practical skills to provide effective therapy to individuals with communication difficulties.
Before pursuing my career in speech therapy, I pursued studies in Economics at TU Berlin from 1992 to 1994. However, my passion for helping others led me to shift my focus towards the field of speech and language pathology.
In addition to my professional qualifications, I have also undertaken various additional training courses to enhance my expertise. Some of the notable ones include Stuttering Therapy Training, PNF Trainer Certification, Manual Voice Therapist, FOTT Training, Voice Therapy according to Schlaffhorst-Anderson, Functional Voice Therapist and Practice Quality Management.
On a personal note, I am a native German speaker and have developed proficiency in English.
Outside of work, I have a keen interest in sports, including jogging, golf, and social dancing. I also enjoy immersing myself in cultural experiences, such as ballet, opera, and theater.
Please tell me a little about your background and what got you involved with awareness.
I am a speech therapist and have specialized in treating people with Parkinson’s for many years. From a professional perspective, I find it incredibly diverse and challenging. Every case of Parkinson’s is different and as a therapist, I always have to adapt to different and challenging situations. This also leads to different therapy priorities for each patient. Sometimes it’s the voice that becomes quieter, sometimes breathing becomes difficult or there are problems with eating and swallowing. But working with people with Parkinson’s means so much more to me. A holistic approach is particularly important to me. This means that in addition to the actual speech therapy treatment, I also emphasize intensive collaboration with family members, doctors, and caregivers. It involves activities such as cooking together and finding ways for the patient to eat and swallow effectively, helping them participate more fully in social life, or engaging in activities like singing and laughing together.
Can you tell me more about your advocacy?
From my work as a speech therapist, the desire arose to offer more to PwP (Person with Parkinson’s) to make their lives easier. I also wanted to provide a means to motivate and facilitate daily practice. That’s why I founded Defy Parkinson’s in January 2023 and released the first course, the “Strong Voice Basic Course.” In my blog and on social media, I additionally provide a lot of information about an easier life with Parkinson’s. There are my “Easy to swallow recipes,” breathing exercises, tips for vocal strengthening, better sleep, and much more. I also go live, and we practice together, or I answer questions.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My motto is “Defy Parkinson’s.” Move, move, move. That is the essence of my work over the past years and it’s what I also experience. Those who confront Parkinson’s head-on and fight by engaging in frequent and meaningful movement have a much better chance against the condition. And that is my passion. I want to assist in this battle by offering effective, sustainable, and holistic exercise programs, providing valuable tips to PwP and above all, motivating them.
What type of goals do individuals with Parkinson’s awareness have when working with you?
The PwP who works with me initially want to focus on improving articulation, developing a louder and stronger voice, and enhancing swallowing abilities. They also seek guidance on suitable foods for their situation and how to prepare them. Another crucial area is improving breathing, especially for those who have had a COVID-19 infection, as PwP may experience long-term respiratory issues.
What effect can your advocacy have on an individual with Parkinson’s awareness?
The PwP I work with, as well as those who participate in my courses, notice that they can speak with more ease, louder, and more clearly even after a short period of practice. Swallowing becomes easier, safer, and more effective. Many experiences improved breathing, with a sense of lighter and deeper breaths as well. They may also observe a reduction in coughing symptoms following a COVID-19 infection.
What would you like to see as a future goal for your advocacy?
I would like to expand my range of specific training offerings and offer additional courses. These courses will focus on deepening knowledge in specific areas. I want to further enhance the holistic approach to living with Parkinson’s. This means creating programs that cater to different aspects of life with Parkinson’s. These may include self-management with Parkinson’s, nutrition for individuals with Parkinson’s, involving the social environment of PwP, and much more.
What events do you participate in?
I recently attended the World Parkinson Congress in Barcelona, as well as various self-help events and Parkinson’s information days. I enjoy engaging with PwPs, listening to their needs, and continuously expanding my knowledge to offer better and more specific services.
How does this also assist the caregivers?
Indeed, the information I provide on the vast topic of eating and swallowing, along with practical tips for implementing it in daily life, is highly valuable for caregivers. It can be challenging to adjust habits, especially dietary habits, to accommodate the changes that come with Parkinson’s. However, by offering guidance and specific strategies, caregivers can better support individuals with Parkinson’s in adapting their nutrition habits to their altered situation.
How can someone get in touch? What is your website?
My website is www.defy-parkinsons-voice-training.com
Here you can find information about the courses, access my trial courses, read blog articles, and learn a bit about me.
Please feel free to contact me via email at mail@defy-parkinsons-voice-training.com.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
I would like to quote from a podcast by Kathrin Wersing. She herself is a PwP and has become a friend who inspires, enthuses, and often deeply touches me.
In her podcast titled “…Jetzt erst recht!” (Now more than ever!) Living positively with Parkinson’s, episode 72, she talks about empowerment and the power we must take control of our own lives. Here is a small excerpt:
“No one, not even the most competent doctor or therapist, can tell us how the disease will progress for us. Yes, thankfully!!! … And if no one can tell us that, then anything can happen. The way we look into the future determines our lives… It is important to ignite the spark of hope within ourselves and others, that it is always worth it to keep living and to remain curious about life. It is important to understand that we have so much within our own control.”