This study would not be possible without the access to clinical and laboratory resources provided by the study host organization, ALS Centre Moscow (Moscow, Russia), and the tireless support from the administration, the volunteers and the medical team of the Centre, including research assistant Dr. Marina Bialik, research assistant, music therapist Maria Pakosh (Ilchenko), research nurses Yana Batmanova, Sergey Korneychuk and Daria Puzanok, administrative director Anna Kasianova, coordinator Andrey Prokofiev, music therapist Ruslan Semenov, volunteer coordinator Ksenia Nazarova, and the medical director of the study Dr. Lev Brylev, who also served as a field supervisor for this study.
The author of this thesis is immensely grateful to all the external expert advisors who have helped to move this research forward: Dr. Richard Sloan at West Dorset MND Association (UK); Natalia Semina at Rehabilitation centre “Aprel” (Moscow, Russia); Dr. Jordan Green, CCC-SLP, at MGH Institute of Health Professions (Boston, USA); Dr. Emily Plowman, CCC-SLP, at the University of Florida (USA); Dr. Yana Yunusova, CCC-SLP, at the University of Toronto; Anastasia Beltukova, music therapist, at “Turmalin” (Moscow, Russia); Tina Georgievskaya, vocal coach (Moscow, Russia); Alex Sherman at the Neurological Clinical Research Institute at Massachusetts General Hospital (Boston, USA); Prof. Alfredo Raglio at University of Pavia (Italy); Victoria Edwards, SLT, Siofra Mulkerrin, SLT, and the MND team at Arthur Rank Hospice (Cambridge, UK); Dr. Kirill Gorbachev at Buyanov Moscow City Clinical Hospital (Moscow, Russia) and Dr. Vera Fominykh at Institute of Higher Nervous Activity and Neuropsychology (Moscow, Russia), Terri Handler and Dr. Matvey Lukashev at ALS TDI (Cambridge, MA, USA).
Indispensable for the research process was direct help with the research design and pseudonymized data analysis from Jufen Zhang, statistician from School of Medicine, Anglia Ruskin University (Chelmsford, UK), Zhanna Bottaeva, SLP, at Clinical and Research Institute of Emergency Pediatric Surgery and Trauma (CRIEPST); Dr. Ashley Waito, CCC-SLP, researcher at Bulbar Function Lab, Sunnybrook Research Institute (Toronto, Canada), Dr. Marziye Eshghi, CCC-SLP, researcher at Speech and Feeding Disorders Lab, Massachusetts General Hospital (Boston, MA, USA), Fyodor Soykin, IT specialist at Canopy Education Inc (Cambridge, MA, USA), Daria Ivanchenko, logopedist (Moscow, Russia), and Ekaterina Bruno, CCC-SLP (Dallas, USA).
A heart felt thank you to Dr. Alexander Street, music therapist and the first academic supervisor for this research project at Anglia Ruskin University, who provided continuous advice and support during all the stages of this research, and to Prof. Jörg Fachner, the second academic supervisor for this project, who helped to define the research subject and to formulate the study aims and design.
Above all, the author is grateful to all the research participants and their caregivers, as well as to Maria Gostintseva, Andrey Demidov, Pavel Andreev, Victoria Petrova, Sergey Borisenko, Anthony Carbajal and many other persons living with ALS, to ALS caregivers, volunteers and care specialists who have inspired this research.
This study was generously sponsored by The Stephen Hawking Foundation (UK), BOSE Corporation (USA), Remedywave (USA) and crowdfunding donations through Palliative Care Initiative (USA). Thank you.
Music therapy is evidence-based professional clinical application of music and its elements to improve psychological, emotional, cognitive, physical and social health and wellbeing of human individuals and communities (Davis, Gfeller, Thaut, & American Music Therapy Association, 2008), (Pedersen & Wigram 2002), (Wheeler, 2015), (Hanser, 2018).
“The new approach involves injecting shRNA—an artificial RNA molecule capable of silencing or turning off a targeted gene—that is delivered to cells via a harmless adeno-associated virus. In the new research, single injections of the shRNA-carrying virus were placed at two sites in the spinal cord of adult mice expressing an ALS-causing mutation of the SOD1 gene, either just before disease onset or when the animals had begun showing symptoms”.
“In adult mice already displaying ALS-like symptoms, the injection effectively blocked further disease progression and degeneration of motor neurons”.
The study in is intermission for the period of 1 March 2019 – 1 September 2019 due to the lack of funding (we are £4731.00 short). Kindly contact Ms. Alisa Apreleva, the principal researcher, if you can help.
Have I mentioned my deep appreciation for speech language specialists and physical therapists? Their findings, experience and advice have been indispensable for developing music therapy protocol to support independent breathing, speech, cough and swallowing for persons living with ALS. Yet more – for measuring the effect of the music therapy treatment during this research.
I spent two days last week at MGH Institute of Health Professions Speech and Feeding Disorders Lab in Boston, Massachusetts, USA, brainstorming the most efficient ways to tackle acoustic speech analysis. My first Master’s and postgraduate research was in linguistics, but I have never considered I would go back to spectrograms! But I am grateful that colleagues at the lab advised me to do so. Visual representations of the changes in vowel space area are telling a wonderful story of hope for persons with early and mid-stage ALS.
Vowel space area changes in ALS with music therapy treatment: the larger is the area within the dots – the more distinct are the vowels, or, simply put, clearer the speech.