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“When we are unable to think or speak or move or be who we once were, we still have this music. It helps us express and communicate. It helps us feel good. It moves us, often deeply, always naturally” – Billy Joel

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Music.ALS

sound support for lives affected by ALS / MND

chapter 1. living with als / MND

What is ALS / MND? Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is the most common form of motor neuron disease (MND). These terms are often used interchangeably. Motor neurons are the nerve cells with a special mission: they convey messages from the brain to the spinal cord and then to the voluntary muscles in one’s body. “Voluntary” are the muscles we normally can control at will: for example, when flexing our fingers, raising our hands, chewing, speaking, walking or dressing. When someone has ALS, protein clumps build up in these nerve cells, causing their death. We do not know why it happens, but, because of this, the messages from the brain cannot be conveyed to the muscles as they should: the signal simply doesn’t come through or comes severely distorted. Muscles stop working properly. This forced inactivity eventually leads to muscle wasting, which, in turn, makes it increasingly difficult for the person with ALS to perform regular daily activities and to take care of themselves.

How it starts The onset of ALS / MND is subtle and very gradual. One may first notice unusual clumsiness, hand or leg weakness, usually on one side, problems with balance, random muscle twitches or stiffness. Some may experience shortness of breath or choking on food more often. Speech may start sounding slurred and nasal. For one of my patients it started with an unusual drag in the voice, minor, but irritating. As the disease progresses, mundane tasks like typing, buttoning a shirt or cutting vegetables for dinner may become increasingly challenging. Standing or walking without support may pose a challenge. Increased salivation may occur as another unwelcome and embarrassing sign of the disease. There is no specific diagnostic test for ALS / MND. A physician may suspect the disease from the combination of symptoms and refer the patient to a neurologist who usually provides the conclusive diagnosis. If the disease shows itself first through hand or leg weakness, it is called “limb onset” ALS / MND. If speech and swallowing are affected, it is called “bulbar onset”. “Bulb” is an archaic term for medulla oblongata, a part of the brain responsible for carrying messages between the brain and the body.

“Never Give Up On Yourself” ALS affects over 400,000 persons in the world, and this number is growing, but it wouldn’t be much of an overstatement to say that each case is unique in its progression. This is not just a figure of speech. Unpredictable forms and timeframes of its progression make ALS / MND one of the most difficult conditions to research. Prognoses can be made, treatments and care arrangements must be considered, but ALS is always full of surprises. The average lifespan of a person with ALS is about 3 - 5 years from diagnosis. However, we all have heard about a British scientist who lived with the condition for 55 years, during which time he became published academic works that defined the modern field of astrophysics, authored multiple popular books for adults and children, became a guest vocalist on two Pink Floyd’s albums, married and divorced two times and experienced four minutes of zero gravity on board of a space shuttle despite the US’s Federal Aviation Administration's disapproval. When Steven Hawking was diagnosed with ALS at the age of 21, doctors gave him a two-year life expectancy. It is true that ALS / MND is merciless. Regardless of the onset, the disability eventually spreads through the whole body, stealing one’s ability to move, speak, eat and breathe independently. The loss of function can happen in the matter of months or in the matter of several years. Interestingly enough, voluntary eye movement, including blinking, never goes away. For some persons diagnosed with ALS this becomes a gateway to a new way of life - the life where bodily disability doesn’t prevent one from fulfilling a greater purpose. An American composer and virtuoso guitarist Jason Becker was 20 when he was diagnosed with ALS in 1989. He lost the ability to speak by 1996, but he continues to compose music using his computer. He has collaborated with Paradise Guitars, Carvin Guitars and Kiesel Guitars manufacturers to design new models of guitars, made guest appearances on other musicians' videos and was featured in a documentary “Jason Becker: Not Dead Yet”, as well as books and mass media interviews. His latest album “The Triumphant Hearts” was released in 2018. “Never Give Up On Yourself” is the motto he continues to live by.

It Is OK To Feel Not OK Stephen Hawking and Jason Becker are exceptional examples of the human spirit reign over the limitation of the body. But one doesn’t have to be a celebrity to persevere. I have met “perfectly normal” folks of all ages who went on to do what mattered most for them, despite the ALS / MND diagnosis. A maths teacher tutoring her young students. A lawyer continuing to work on meaningful cases. A mother and a wife staying the heart and the joy of her household. A grandpa writing his life story for his grandchildren and taking pride in watching them grow. There is no cure for ALS, but supportive therapies can increase the lifespan and affect the quality of one’s life. 20% of those diagnosed with ALS survive for over 5 years, 10% live longer than 10 years, and 5% live for 20 or more years. Keeping up bright spirits is helpful along the way. But what if you can’t? Let us be real: not everyone is born a warrior. ALS is a devastating, challenging disease at every step of the way. A scary one. An unfair, hope-crushing, mind-bending one. And it is ok to feel sad. It is ok to feel overwhelmed. It is ok to feel angry. It is ok not to feel ok when you have ALS. There is so much to take care of. There are drugs to consider and paperwork to fill. There are tough choices to be made, all of them urgent. Would you like to bank your voice to use it later in computer-facilitated communication? What kind of blender do you need to make your food easier to swallow? How do you brush your teeth, bathe, change clothes? How do you feel about introducing non-invasive mechanical ventilation? Is it really time to start using a wheelchair? When do you tell your children? These are very personal, no one-size-fits-all decisions, there are too many of them. Add to these physical and mental fatigue, regular visits to the clinic, constant adjustment to the changes in your body, difficulty sleeping, uncertainty of the prognosis, grieving the future as you imagined it before the diagnosis… Feeling low is only normal in these circumstances and should be the least of your concerns, right? Wrong. Mental health of those living with ALS / MND are, unsurprisingly, often overlooked and undertreated. Meanwhile, clinical depression is prevalent in ALS and, if left untreated, has a detrimental effect on survival and quality of life. Anxiety may skyrocket immediately after the diagnosis and then later, when getting used to breathing through a ventilation mask. Anxiety and depression are not signs of personal weakness, but rather a comorbidity - a set of symptoms to go hand in hand with other manifestations of ALS. They are not “just in your head” - they are in your body, too, making your heart race, making your hands shake, making you unable and unwilling to start another day, challenging your spirit. But know what? You do not need to take on this challenge all by yourself. Anxiety and depression are very common, treatable conditions. Make sure to let your medical team know how you feel. There is help. There are medications. There is talk therapy. And, the sweetest of the prescriptions, there is music.

Brain Fog: Nick’s Story Ten years ago, on the mission to eliminate my ignorance, I headed first to ALS patient organisations’ websites. I learned that the disease cripples the body, but leaves the mind completely unaffected and clear. Two years later I was blessed with a clinical situation that was confusing to the point of being insightful. I met Nick when his ALS had already progressed to claim his legs and arms movements. His breath was shallow, but enough for him to get by without a mask. “How does he communicate?” - I asked the clinical coordinator before the visit. - “He can whisper a word or two, but he is very quiet and very difficult to understand. He doesn’t use any alternative communication system though.” And so it was. A care worker - an energetic and stout smiley woman - opened the door and showed me to the room where Nick was lying in the bed, on his back, under a warm throw. She was protective of her patient: “He gets tired easily, mind you. I will be in the kitchen, cooking. Let me know if you need an interpreter: most visitors don’t get Nick when he speaks, but I do.” Lip reading and yes-or-no questions did the trick however. We started with a Native American flute improvisation, then I found out that lounge music was Nick’s first preference - since this was not a genre I could reproduce live, Spotify came to the rescue. As we listened to the playlist of light beats and repetitive simple melodies - something as far away from my musical universe as it could be, - I noticed Nick’s frown line to dissolve and his face to become tender. “Do you want me to sing anything for you?” - I offered, and as Nick was running through the (long!) list of his favourite artists, I couldn’t help noticing that his voice grew more articulate, became resonant, and it was not challenging at all for me to understand what he was saying now. I looked up the lyrics to one of the songs he mentioned online, fumbled for a minute to find the right chords and started singing. As I sang, I could see Nick lip syncing to the lyrics. Then - he started to sing along, his voice breaking and frail at first, whispery and off pitch, but gradually gaining strength and timbre.... “Oh, my… What is going on? How? What did you do?” - the aide stood at the doorway, wide-eyed, gasping for words, as the song ended. “It’s ok” - smiled NIck, and added in a deep, charming, baritone: - “Could you fix us dinner?” I could have written here that what comes across as a miracle for an odd observer, is a customary work situation for a music therapist. Read Oliver Sack’s “Musicophilia”, search for “music therapy, dementia, singing” on YouTube, and you will understand why. Familiar music - favourite songs from one’s youth, especially - is a well-documented “magical key” music therapists around the globe use to unlock the alertness, motivation, memories and physical mobility of persons with frontotemporal dementia. However, Nick’s deep-voiced, motivated singing came as a shock for me. Our session became a mind-boggling professional riddle pleading to be solved. How was that possible? His voice came back, his mood changed, his breathing became deeper, his zest to live was obvious. It was as if his real, authentic, healthy personality appeared, shining through the fog of the disease. How could that be if Nick’s immobility and problems with breathing and swallowing left no doubts: he had mid-stage ALS? If his vocal muscles were intact, why was his speech barely audible, in the first place? My clinical intuition screamed the answer, it all felt too familiar: Nick reacted to his favourite song in the same manner any person with frontotemporal dementia would! I have seen this same reaction to familiar music so many times during my work in psychiatric hospitals and in senior care centres. A person in front of me would be confused and apathetic, their voice weak or absent, their movements slow, their eyes vacant. And then - as soon as the music is guessed right and given several minutes to have an effect - a drastic change occurs. My client’s face would light up, their whole body would become lively and alert, their voice and sense of self would become present. But what Nick had was ALS, not dementia. ALS was supposed to affect the body, but to leave the mind clear. Or was it? I needed answers. Published scientific research provided me with some. I found out that “in the last two decades, there has been growing evidence that FTD (frontotemporal dementia - AA) signs can be seen in patients primarily diagnosed with ALS, implying clinical overlap among these two disorders” (Ferrari et al, 2014). I also found out that comorbid frontotemporal dementia (ALS-FTD) occurred in approximately 14% of patients with a new diagnosis of ALS and, moreover, some cognitive or behavioural changes occurred in up to 50% of cases (Phukan et al, 2012). This was both bad news and good news. The bad: personality changes occurred in ALS, in addition to physical changes. Lack of interest (apathy), brain fog, communication problems, memory impairment, emotional turbulence or indifference were among the symptoms, at least in some cases. The good, tentatively: if the mechanism similar to the one acting in frontotemporal dementia was to blame for these changes, then music therapy had an unsurpassed, time-and-again-proven potential to support persons along the ALS-FTD spectrum. Sense of self could be restored. Communication could be improved. Motivation could be found. Relationships could be preserved. This discovery became my first turning point from clinical practice to scientific research: apparently, the potential of music therapy in ALS stretched well beyond the palliative “music for emotional support” model. Quality of lives affected by ALS could be drastically changed for the better through simple music routines.

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Angels All Around As hard it is to face the unknown when diagnosed with ALS / MND, arguably, it may be even harder to see your loved one lose their strength and their independence, and to stand by their choices whatever those may be. Family caregivers play a key role in ALS care, providing care for 47 hours per week (!) on average (Galvin et al., 2016) and actively participating in clinical decision making (Aoun et al., 2013). Nearly any treatment or rehabilitative activity intended for persons with ALS requires the caregivers’ help. In addition to caretaking, they have jobs, schools, bills to pay, commitments to carry out. Dry language of the available research on the subject states that caregivers’ physical and emotional health and quality of life are “significantly impacted” when ALS occurs in the family (Qutub et al., 2014; Williams et al., 2008). Caregivers of persons with ALS rarely have a chance to have their own physical, emotional and social needs to be met. Self-care is a luxury. Expressing negative thoughts is a taboo. Future is indefinitely suspended. Life becomes ALS-centred. They do not complain. They keep learning new skills: safe walking, feeding, ventilation, alternative communication… They keep positive. They are angels, loving, immensely patient. They can’t afford to burn out. They have no chance to grieve the life as they hoped it to be.

Young Caregivers On his good days Anthony Carbajal can be seen riding his wheelchair / camera “Frankie” (short for “Frankenstein”) in Los Angeles, California. Anthony continues to pursue his professional calling as a street photographer and a photo course teacher. His “Kiss My ALS” YouTube video inspired many ALS bucket challenge followers, including myself, to spread the message far and wide. When diagnosed with a familial case of ALS in 2014, at the age of 26, Anthony already knew what he was about to encounter. He attended middle school when his grandmother Marie was diagnosed with ALS. Several years later, his mother Catherine received the same diagnosis. Anthony learned to be an ALS caregiver as a child. After graduating from college, he returned home to continue taking care of his mother. Then, for eight years, before Catherine’s death in 2022, they were in it together, mother and son. ”Mom and I have ALS. ALS doesn’t have us”, - wrote Anthony. Only in the United States an estimated 1.4 million caregivers younger than 19 years of age are actively involved in care for ill family members. We do not know how many children in the world take care of their relatives with ALS, but we do know for fact that, due to cost, the youth quite often take the place of professional aides. And theirs is a heavy burden to carry. Recent research tallies the numbers. In families with ALS, children from 8 to 18 years of age spent on average five hours daily providing care and helped with an average of 12 tasks (Kavanaugh et al, 2020). The children received no training and lacked support for this care. Their quality of life is predictably worsened: children who are carers tend to be isolated socially, their school performance is affected, their sleep is fragmented and not enough (Kavanaugh et al, 2021). Yet, their help is indispensable. When providing in-home music therapy for persons with ALS, I saw young caregivers who performed their duties readily and matter-of-factly. From answering the door and bringing water to cleaning up and helping with clothes changes, caregiving was simply a part of their home routine, it was their normal. Children caregivers are prone to anxiety. They feel different from their “regular” peers. As children tend to do, younger ones may blame themselves for their parent’s disease. Teens often feel trapped in the situation and may become defiant, bitter and depressed. It can be argued if they need to be relieved of their caregiving responsibilities fully or in part, but, no matter what the answer is, children in ALS-affected families do need regular opportunities to play and to express themselves, as well as safe places to explore their emotions, fears and hopes, to rest, to dream and to be supported. I know from experience that music can be one of such spaces.

Music circle for children from families affected by ALS / MND. 2017

Time and space to be childlike, silly and free. 2017

ALS and Exercise Sometimes I like to imagine the time when the cure for ALS finally becomes available. Would the miracle medication stop the nerve cells deterioration or would it be able to reverse the process, too? Would physical rehabilitation be needed? What about side effects? Would speech, swallowing and movement be fully preserved? How normal would the new normal be? As of now, there is no cure for ALS, but there are therapies to reduce severity of symptoms and to increase lifespan. And, of course, there is research underway. There is hope. But whilst drug trials are, historically, generously funded, complementary therapies for ALS - such as special nutrition, mind-body therapies, massage and exercise - have stayed markedly underresearched. This is why the idea of physical exercise for persons with ALS has remained controversial until recently. In the past, persons with ALS have been discouraged from exercising based on the assumption that exercise can lead to muscle fatigue and increase patients’ disability (Sinaki and Mulder, 1986). However, this assumption has been challenged by inquisitive scientists, most notably by the lab experiments of doctor Anabela Pinto, MD, PhD, from Institute of Molecular Medicine at the University of Lisbon and the meticulous evidence reviews of doctor Vanina Dal Bello-Haas, PhD, PT, from School of Rehabilitation Sciences at McMaster University in Canada. Their findings inspired new research looking at the effects of exercise on benefits of exercise for early and mid-stage ALS patients. In the recent decade multiple studies have demonstrated that limb (movement) and respiratory (breathing) exercise may, actually, be helpful for persons with ALS on several levels. Firstly, exercise has the potential to counter so-called “disuse weakness”. The “use it or lose it” approach is kind of intuitive: if you stay inactive, your cardiovascular health suffers, and your muscles weaken and tend to atrophy sooner. Secondly, exercise may activate motor neurons on cellular and morphological levels, which, in simple language, means that nerve cells' shape and structure stays healthier in the bodies that stretch and move regularly (Plowman et al., 2016). The result: persons with ALS retain their ability to move and function independently for longer. It is not hard science yet, but these new findings confirm the intuitive notion: exercise is good for persons with early and mid-stage ALS. It can help you stay active, breathe naturally and - as my own research hints - slow down the decline of speech and swallowing (Apreleva et al, 2021). Don’t head to the gym just yet though! All the research emphasises that exercise in ALS absolutely has to be S-I-M: Supervised, or done under the guidance of a physical therapist, speech language specialist or a music therapist; Individualised, or tailored to your condition and abilities and adapted regularly; Moderate, or gentle: exertion can be as bad for the nerve cells and muscles as inactivity. If you are looking to start an exercise routine, consult with your doctor and make sure you stop and have rest whenever you get tired. We will talk about healthy activity strategies and the signs to look out for later in this book.

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I hope you enjoy this book. My ALS / MND work is not currently sponsored by any organisation. Please consider a donation. Alisa

Chapter 1: Summary It is not the purpose of this book to provide a comprehensive overview of ALS / MND nature, progression and treatment. There are many excellent ALS-focused online resources with a wealth of information and regular updates on novel treatments. ALS News Today, International Alliance of ALS / MND Associations, ALS Association (USA) and MND Association (UK) websites are good places to start. For our purposes, it is important to understand several things about ALS / MND: 1) Every ALS case is unique. There is no way to definitively predict the way and the speed of its progression. Choices or care and treatment can make a difference, too. 2) ALS affects not only the body, but the mind as well. Mood, cognitive abilities and motivation can be directly affected by the disease, in some cases. 3) Anxiety and depression are often overlooked amidst other needs of persons with ALS. Mental health support, such as therapy and/or medication, can significantly improve the quality of life and the longevity after the diagnosis. 4) Caregivers invest a lot of time and effort in caring for their loved ones with ALS. They, in turn, very much need support, appreciation and opportunities to rest and to express their feelings in a safe space. Many of these caregivers are children under the age of 19. 5) There is no cure for ALS, but there are supportive treatments, including medication and complementary therapies. These treatments may make life feel better for everyone affected by ALS, including their families and caregivers. 6) Exercise is good for persons with ALS, but only if it is S-I-M: supervised, individualised and moderate. With this, let us move to the next chapter and speak about music therapy.

chapter 2. music as therapy

What is music therapy? To put it very simply, music therapy is the professional use of music and its elements for functional purposes other than pure aesthetic pleasure and enjoyment. Music therapists can be found in classrooms helping children with special needs to learn talking or counting. Music therapists guide persons with dementia back to their sense of self and reorient them to their surroundings. In neonatal intensive care units, music therapists help preemies to comfort themselves and to learn sucking and breathing on their own, which has lifelong benefits for the babies. With help from neurologic music therapists, stroke survivors restore their speech through singing and their ability to walk through rhythm-based activities. Burn victims and chemotherapy patients are skillfully distracted from pain with live and recorded music. Music therapists who work in behavioural health attune to the emotions of their clients and gently stir them away from depressive, anxious or psychotic states through singing or playing simple music instruments together. To put it more formally, music therapy is the clinical application of music and its elements to improve psychological, emotional, cognitive, physical and social health and wellbeing of human individuals and communities. Music for healing purposes has been practised in this or that form since the dawn of humanity. From birth support singers in Ancient Egypt, special hymns to improve mental health in Ancient Greece to Gregorian chants to treat respiratory ailments during the Middle Ages, music was rarely ever regarded as a purely aesthetic phenomenon. In the Western world, music therapy in its current, professional form emerged from the work of musical volunteers in the USA who played and sang in the hospital halls to uphold spirits of the wounded during the first and the second world wars of the twentieth century. Soon, the doctors and the nurses noticed that not only souls, but bodies of their patients, too, recouped sooner when nurtured with the music regularly. Attempts to understand the healing potential of music and the following formalised musical volunteer training led to the birth of the new profession in 1944.

Who are music therapists? Currently, there are close to 20 000 active music therapists in the world. Not many at all, and this is not surprising considering how much it takes to become one. To be accepted into a higher education music therapy program one needs to be a highly skilled musician - singer, improviser, musicologist, proficient on the guitar, on the piano and on the percussion. Then, there is the whole list of other requirements. One has to be academically bright, capable and eager to study a wide range of disciplines - from human anatomy and abnormal psychology to statistical analysis and business management. In addition, the future music therapist has to be personable, empathetic, organised, culturally aware, physically strong, and possessing a good sense of humour and exceptional speaking skills. All this makes a college sophomore a suitable candidate to enter into one of state-approved music therapy programs. Several years of rigorous studies follow, with many hours spent on site, working with clients of all ages and abilities in special education, senior living, correction facilities, psychiatric wards and hospitals. If the student finishes the program successfully, they can apply for an internship - in the United States, for example, it is a minimum of 1040 hours of work under the supervision of an experienced music therapist. Then there is a 3-hour, 150-questions board certification exam, which entitles the new professional for the “MT-BC”, or “Music Therapist - Board Certified”, credentials. Some states require a music therapist to obtain a licence, too. Then, there is continued education and specialisation - the way to keep up with the ever-evolving field and maintain the board certification. But you would never tell. When you meet a music therapist during your hospital stay or in your child’s inclusive classroom, you will see a smiley, polite person with a guitar, an iPad and a bag or two of fascinating music toys: frame drums, kalimbas, gourd maracas, rainsticks, small harps and steel tongue drums. “Here comes the music lady,” - a nurse or a teacher would announce. - “Have fun!” And we will. Otherwise, music therapists are just regular folks.

Expressive Arts Magic Music therapy is sometimes considered to be a part of expressive arts therapy - an umbrella term for using anything from painting, dance, drama and writing to culinary arts, photography and flower arranging for therapy purposes, professionally. The fundamental idea behind expressive arts therapy is, exactly as it sounds, expression. Therapist creates a safe space for the client to express their innermost emotions, ideas, fears, contradictions and hopes through various art forms. Then the client can step aside and explore this externalised self-expression from “outside”, as something separate from oneself. With guidance and support of the therapist, the client then embarks on a journey to transform this expression into its healthier, more functional version (“So, here is a monster. How do we make it happy?”). The final goal of this process for the client is to internalise the new, healthy expression, to recognise it as a part of their psyche and to leave therapy with a renewed self-image and new capabilities for life, connections and experiencing the world. In essence, the process of expressive arts therapy is very close to the process of conversation-based psychodynamic psychotherapy. The main difference here is that the process is, for the most part, nonverbal: if words are used (like in drama or writing therapy), they are used metaphorically. Only in a later, reflective stage of the conversation between the therapist and the client a more straightforward language, akin to that of counselling, is normally used. Another difference is the art experience itself. Expressive arts therapists are trained to make every creative process easy and engaging for their clients. They start with basic elements and simple tasks, they guide the client through the process gently, encourage and fill in the gaps as needed - just so that the client feels inspired and successful in what they do. This leads to what Maslow qualified as a “peak experience”: a state of flow, pure joy and elation, something which stands above everyday routine. These are the “moments to live for” which, when they happen in our daily life, we look back to seeking the meaning and agency to move forward. In expressive arts therapy these peak experiences are the main catalyst of change. Music, as one of expressive arts therapy modalities, is conducive to this process of psychological transformation: finding one’s voice, healing from trauma, restoring broken relationships or navigating through grief. This is what we can call “music psychotherapy” within the wider music therapy field. But then, there is more.

Special powers of music What may be of special interest to someone affected by a neurological condition is the ways music “works” in our physical body. Remember NIck’s case? Familiar music almost instantly improved not only his mood and motivation, but his physical ability to speak - the purely mechanical processes of breath support and articulation. How could that happen? Founders of The Academy of Neurologic Music Therapy - a research and continued education superhub for, well, neurologic music therapy - explain this by the ways music is represented in the human brain. EEG and MRI studies show that there is no specific “music centre” in the brain. Instead, the processes of listening to music, making music and even silently imagining music “light up” multiple areas throughout the brain. Electrical activity is dispersed through the areas which are also responsible for such important functions as speech, movement, emotions, memory, attention, perception and rational thinking. This overlap explains why music affects our feelings and physical wellbeing so profoundly, why it has the power to bring memories and to help us learn new things. It is no secret that exercise is better with music. When headphones were banned by the organisers of the 2007 New York Marathon, it caused an outrage, and many runners simply ignored the ban, risking disqualification. No way they were to run the track without their favourite beat! Debates continue for the legitimacy of using music in professional sports. No wonder: on several levels, music can be considered a powerful doping! Entrainment - the tendency of our brain to synchronise bodily motor activity to an external rhythm - is actively used in neurologic music therapy practice. It is an innate ability: even babies start bouncing the beat whenever they hear it (look up “Baby Dancing to Beyonce” on YouTube if you need a proof). Think of it: it is practically impossible to walk off beat when music with a strong rhythm is playing in the background. It is not just about the rhythm though. Music phrasing affects us, too. We perceive music not as a sequence of separate notes, but rather as longer, coherent units - phrases, or periods. We tend to automatically adjust our movements to the length of the music phrase. Right music makes motor planning easier, especially for people with neurologic conditions, such as Parkinson’s, Alzheimer’s or cerebral palsy, and for stroke and traumatic brain injury survivors. Music has a direct effect on our hormonal state as well. It regulates levels of the “stress hormone” cortisol, and increases levels of the “motivation hormone” dopamine. Singing brings on the “love hormone” oxytocin, whilst making music together increases the “bonding hormone” prolactin. Remember ever accidentally overhearing your favourite music - let us say, in a supermarket or in a coffee shop? Most likely, you feel an instant positive mood boost and a surge of energy. This is what properly chosen music tends to do, too: it improves our emotional state through positive associations. Recent research goes as far as to suggest that music affects even our gene expression. But of the latter we know so little we probably should leave it to the lab scientists for now. Listening to various types of live and recorded music, singing solo or in a group, playing simple instruments in certain planned ways, moving to music or improvising - each of these activities would stimulate different parts of your brain and activate unique processes. Professional music therapists are specifically trained to manipulate various music elements and activities to help their clients achieve the desired results. Because music affects different parts of the brain rather than a specific “music” region, it may be beneficial even if the nervous system has been affected by organic changes - such as protein build up, tumour or necrosis (cell death). Regular music-based exercises can then contribute to the desired neuroplasticity changes - “rewiring” of the brain pathways, or re-learning the lost functions such as speech or movement. The important thing is, in some situations music therapy can help faster and more effectively than other treatments and sometimes it can amplify and consolidate the effects of other therapies, including physical therapy, speech therapy, occupational therapy or verbal psychotherapy.

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Neurologic music therapy framework

Team Play Music therapists are not all-knowing magicians. We do have basic knowledge of anatomy, physiology, psychology and general understanding of various pathologies and conditions. We are trained to read research. We are creative, and we can figure out how to harness the power of music to help in each particular case - and when to acknowledge our irrelevance. We know our limitations though, and we love to work with multidisciplinary teams to find solutions and to fill the gaps where standard of care treatment is not enough. This is what happened to me, this is how my experience with music therapy for ALS / MND started: in 2013, I met my team. When a person diagnosed with ALS comes to a clinic, they are usually seen and advised by a whole team of specialists who specialise in motor neurone disease. Such a team often includes a physician – neuromuscular specialist, a physical therapist, an occupational therapist, a speech language pathologist, a respiratory therapist, a nurse coordinator, and a social worker. Additional specialists, such as nutritionists, pulmonologists, gastroenterologists, assistive technology experts, psychologists, palliative care providers, chaplain or priests, may also be present. Multidisciplinary ALS care has been shown to increase survival of persons with ALS and to improve their quality of life (Van den Berg, 2005), or, in plain language, to help those who have ALS live longer and better lives. Music therapy definitely had potential to contribute to this goal. But the learning curve was steep. Discussing my initial ideas of suitable music therapy goals and essential activities for ALS with my multidisciplinary team was invaluable. Their friendly and open-minded, yet meticulously scrutinising questions and feedback allowed me to highlight the most pressing needs of persons with ALS and their families and caregivers and to address safety concerns. Of which there were many.

Walking in the dark What surprised and initially discouraged me the most was the absence of any research on music therapy and ALS. In 2012, when I started my exploration, I found one mere mention of music therapy and ALS in a joint context - it was an abstract from the proceedings of the 6th Australian Palliative Care Conference, 2001, by Petering, H. and McLean, J., entitled “An interdisciplinary approach of music therapy and nursing in the care of people with motor neurone disease”. It was not very informative, too: the abstract purely suggested that music therapy could contribute to MND multidisciplinary care. Unfortunately, I did not succeed in finding and following up with the authors. Much later I was able to find another early reference: an abstract by Forrest, L., published in the 10th World congress on music therapy, Oxford, UK, 2002, proceedings was entitled 'Using Music Therapy in the Symptom Management of Patients with Motor Neurone Disease'. Based on clinical observation, the author suggested that music therapy could reduce distressing physical symptoms such as dyspnoea and pain, and associated feelings of loneliness, anxiety and sadness for patients with advanced ALS. I didn’t even have this vague guidance when I started researching the ways music therapy could support people and communities affected by ALS / MND. I was moving haphazardly, blindfolded, looking to bring hope and do no harm. Given the complex nature of ALS, the latter became my utmost priority when mapping out the music therapy program for ALS Moscow Centre. Playing music instruments in certain, measured ways is a motivating and gentle alternative to gym visits, but how much muscular load is safe at every stage of ALS? Learning appropriate vocal techniques may help communicate more effectively, but will singing exercises sustain one’s voice or exhaust and damage it? Tears are near when we do the deep music psychotherapy work of grieving and finding new meaning. These tears are healthy and often much needed, but is it safe to cry when a tracheostomy tube is in place? When someone with early-stage ALS enjoys therapeutic singing sessions, how do we adapt the exercises when the disease progresses? There were no studies published or music therapy clinicians experienced with ALS to turn to. What I had was some evidence from palliative music therapy, a wealth of knowledge from neurologic music therapy research on other neurodegenerative diseases and stroke, and - first and foremost - the eager support of my multidisciplinary ALS team and of the brave and curious souls from ALS community who volunteered to participate in the first music therapy sessions. With their help, I created the first experimental music therapy protocol for ALS. The protocol was 10 pages long and consisted of interchangeable blocks of music activities to address various physical, social, emotional, communicative, cognitive and spiritual needs at different stages of the disease. I was lucky to be introduced to a local music therapist who continued to provide services according to this experimental protocol when I went back to the USA. From there, I kept supervising the treatment and refining the protocol as needed. In 2014 I came back to film an ALS awareness music video. That’s when I met Maria.

Alice From Wonderland - 2020 documentary by Elena Demidova

Maria Maria was thirty-something, about my own age, and I couldn’t quite wrap my head around the fact. She had already lost her speaking voice, but could breathe and vocalise, and smile, and used a computer mouse and a virtual keyboard to type in a Word document. Her 9-year-old daughter was with her when I came in with a bag of music instruments and two video operators into their tiny apartment. I introduced myself. “Hello. I’m glad to meet you’, - Maria typed. This short phrase took about five minutes and immense patience and dedication on her part to complete. What should I do next? How do we find the common ground? How do we make music together? I took out my instruments - the guitar, a rainstick, an ocean drum, a gourd maraca, handbells… I played my Native American flute, then sang a simple folk tune Maria’s daughter knew from her school music class. Maria smiled. In the following years working with the ALS community, I learned to recognize this kind of smile. Music therapy offers a lot, but for mothers with ALS the most desired benefit and the most cherished gift of therapy is sharing music with their young children and seeing them involved, curious and playful. I saw it time after time, in different families, in different circumstances. It felt as heartwarming as it was heartbreaking. Eventually, including children in therapy with their parents, with their permission, of course, at least for part of the session, became the rule of my ALS program. Yet, I felt there was more I could do for Maria. “What is your favourite song? Do you want me to sing anything for you?” - I ask her. Maria smiles and starts typing. I know the song. Anyone who grew up in the Soviet Union knows it: it is from a popular children’s movie about the future. The lyrics sound like a prayer: “Splendid faraway, don’t be cruel to me, don’t be cruel to me, don’t be cruel. From a pure source I start my way”. The melody is breathtakingly beautiful. I start playing my guitar and singing. Maria looks at me. I look at her. Our eye contact becomes intense, and at some point a strong sensation, a sensation I have never experienced before floods my whole being. It feels as if I have become Maria's voice. It is not I who is singing, but it is Maria who is singing through me. Her eyes conduct the melody and stream the deep emotion behind it. I merely translate it all into sound. Tears well up in my eyes, run down my cheeks. This feels weird. This is my first ever time crying when leading a music therapy session. Of course, there are solid theoretical explanations for this awkward moment: empathic perception, attunement, countertransference. These are available for me to comfortably hide behind in order to preserve my dignity. But I don’t need to. I give in to the experience. I know Maria feels it, too. I become her voice.

First Music Therapy Programme for ALS / MND That impromptu session with Maria turned out to be the point of no return for me. Later that year I was busy starting a new music therapy program for Harvard Vanguard Hematology / Oncology, training Berklee College of Music students in medical music therapy, leading early development music classes for bilingual children and researching therapeutic benefits of traditional folklore songs - all that whilst homeschooling my own young son and daughter. Yet, in between all these activities, my mind kept coming back to the moments in Maria’s apartment when the music so obviously, yet intangibly altered our reality and highlighted what was the most precious. Momentarily, it erased the constraints of the devastating disease, giving Maria a way to express herself fully, giving me a chance to understand and to feel what she was feeling, giving Maria’s young daughter a rare opportunity to watch mom in control of the situation, setting the mood. Humans are wired for music, and rarely it has zero effect on a listener or a player. Because of this, music can often be a pleasant and useful addition to our everyday routines, medical care, rehabilitation, wellness programs and business environments. In some cases, however, its effect is so profound that absence of music therapy services is akin to denying the essential treatment. For example, labouring mothers can benefit from music, but other means of coping are often equally useful. However, active music therapy is a must in the neonatal intensive care units, as it is highly effective in improving health outcomes, babies leaving hospital on average 11 days earlier in case they follow a carefully outlined music protocol. Other such instances include neurologic music therapy in stroke rehabilitation, active music therapy for persons with Alzheimer’s and interpersonal music interaction with children on the autism spectrum.

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Sorry, this chapter has not been finished yet! Here I will share insights from the first, experimental, mostly volunteer-driven music and art therapy programme we ran in 2014 - 2017. Please consider supporting or sponsoring my further writing. Alisa

chapter 3. how music can help: music therapy goals

Chapter 3 is in drafting stage. Here I hope to write about the areas where I have found music therapy to be especially helpful for people affected by ALS / MND (and explain why exactly music may be helpful in each case). Alisa

Coming to Terms Disbelief, grief, anger, confusion, distorted sense of self, and social disconnectedness are common consequences of ALS diagnosis. Evidence from psychosomatic and health psychology research fields demonstrate a close bilateral interrelation between mind and body, with emotions affecting cardiovascular and immune system responses and physiological events impacting an individual’s psychological state (Särkämö et al., 2008). Based on this evidence and previous clinical experience with various adult populations, the principal researcher hypothesised that music therapy, in the form of song singing, song writing, lyrics substitution, listening to and discussing music, meditating and reminiscing to music, and interactive improvisation, may decrease stress, strengthen the mind body connection and help persons with ALS to regain coherent self-image. Taming anxiety Making difficult choices Improving sleep Family matters Managing pain Staying fit Eat. Speak. Breathe Finding motivation to go on Having fun Telling stories Staying creative Caregivers need support, too Children and ALS / MND

chapter 4. Music therapy toolkit for als / MND

I am looking to fill Chapter 4 with practical, practice-proven, evidence-based therapeutic music and art exercises and ideas for people with ALS / MND, for caregivers, for music therapists, for speech therapists, for occupational therapists, for physical therapists, for aides, social workers, volunteers, carefully tailored to ALS / MND stages and symptoms, with expected effects and precautions clearly explained. Alisa

Music Therapy Downloads

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Music Therapy Science

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Music Therapy Results “I feel lighter and happier after we do music” – Person with ALS “I can relax, I cry less and feel less nervous after a (music therapy) session” – Person with ALS “Unless I do my (music therapy) exercises, it is difficult for me to start speaking in the morning. I notice that after the exercises speech is easier for me, and my family understand me better” – Person with ALS “My swallowing improved, I can again take water with my lips and I have almost stopped gagging when I eat – something I constantly experienced in the past“ – Person with ALS “Music therapy was very important for mom. She always smiled when she spoke about the sessions” – Caregiver

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Alisa Apreleva, PhD, MT-BC

99% human, singer, music activist

Hi, I am

I CREATE original music live and in studio

I INSPIRE people of all ages and abilities to Sing4Change

I RESEARCH neurodiversity in online spaces at Oxford University

I CONSULT businesses and charities on music therapeutics

I SUPPORT communities affected by ALS / MND through arts and music

I WRITE about the weird and wonderful ways music touches our lives

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Let us make something beautiful happen

I am based in Oxford, UK, and Boston, USA, and open to collaborations, consultancy, teaching, musiking and public speaking engagements.

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