We cried and talked about the disease through music “about death”

It helps those who would seem to help anymore, who denied arms, legs who find it difficult to breathe and swallow. She gives them a sound similar to the sound of the sea, rain or wind. “To ring up”, to relieve stress, to exercise to support breathing, swallowing and speech functions are the music therapist Mary Ilchenko.

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Six years ago in Moscow, a Service helping people with amyotrophic lateral sclerosis (als). This is one of the most serious and incurable diseases of the nervous system, in which due to the gradual loss of motor neuron signals from the brain do not reach the muscles, and begins a slow paralysis. The causes of the disease are still unknown. In a short time the person becomes disabled deep. According to the latest data, 100 thousand people have one to three patients with ALS.

A huge backpack and guitar in hand but the weight was not felt

Why am I here? Why did you come to this? A question I have been asked by many, with whom I spoke. I think to find the answer – is also part of the way. My way.

My colleague, an experienced music therapist Alice Aprelev, wisely said, “it is Not necessary to reduce to exercises and music. Music therapy is about meeting individuals, and the fact that the set in the side of the guitar will become just a pretext to talk about life, about death, about rest, about the person and what is important to him”.

Help. Music therapy is included in the list of subsidiary occupations of public health. A music therapist uses music within a therapeutic relationship to effectively work on the physical, emotional, communicative, cognitive, and social needs of people. Music therapists work in hospitals, hospices, nursing homes in many countries of Europe, USA, Australia, China, Japan, and now in Russia and former USSR countries.

A year ago, when I started to work as muzykoterapia, I came to the ward with a huge backpack and a guitar in his hands. And the burden was not felt. For me it was important for each moment. I was thinking about things such as what color bring a blanket for Nina Gavrilovna. Orange – to give her courage? Or it is too bright, and you need to choose something mellow?

I thought about who are our wards. What kind of personality? Nina Gavrilovna, Hope, Sergei. What sounds inspire them? Noise? A bit of wind, a rustle? Or it will be bells ringing and a high frequency sound to “ring” the mood is about the joy, about the state of “I want positive”?

Percussion instruments with echoes and overtones, Kalimba, triangle, tubular bells, I think it’s about contemplation. Sometimes, maybe, about the internal weeping. And rhythms – what are they? Talking about clarity, about support, about control, about the desire for certainty.

I wanted to truly help people, not formally, but with love. Wanted to music and exercises to help relax, support it, switch the brain on another wave.

The frog “with the light” and imaginary friend

One of the wards of our Service’s name is Elizabeth. A young, beautiful woman. Eastern blood. Always been active, active, worked in the field of beauty, saving money on the purchase of his apartment in Moscow. Husband and I separated. Has two daughters 7 and 14 years. And suddenly sick BASS. I was diagnosed with clinical depression, speech disorders, trouble swallowing.

The team help people with als have recommended Elizabeth music therapy. But she repeatedly canceled meetings under various pretexts: still have to think about feeling bad…

It was all clear. Depressed really no strength do not want to do anything, any choice, any new person is an emotional strain and the internal resources are absent.

I made the decision for Elizabeth. Said when can you come, and come. Told me about music therapy, showed musical instruments. Elizabeth chose a major “frog” is an instrument from Thailand. “She’s as fat and unhealthy as I do,” smiled Elizabeth.

Such situations are for me always a challenge. How to respond? What to do? What’s important now for the human to hear? I remembered the words of colleagues of Alice Apreleva about the fact that in man it is always important to see the healthy part – whole, untouched by disease.

In Elizabeth this part was humor, irony and lively, bright temperament. So I said to her: “Look, but this frog is smiling! It “with a twinkle”!” And we both smiled.

The entire first meeting and we sat around tools. Elizabeth said something, asked something of their daughters. We did two or three exercises that don’t particularly inspired her. At the end, Elizabeth said that is very tired and wants to go, she has no strength and pain in my leg.

I felt helpless. Felt that can not do anything, just sit and listen. But still invited Elizabeth to spend a little time in silence and draw to the music. I wanted to switch her attention, to give a stimulus to creativity.

Elizabeth hands with contractures. She won’t be able to hold a pencil. We agreed that I will act on her instructions and paint the outline of a man in the colors and the way she wants. Turned on the music. It seems that the process has captured the attention of Elizabeth. She smiled, thinking, then looked at the picture and cried. Then it became very calm. And we actually stayed a bit in silence.

Suddenly she said, “I feel so safe now, so good that I have this man.” I asked: “Who is it?” She said: “It was a man. We’ll go for a walk with him, may, on Red square, maybe somewhere else…” Then the room came a nurse. Elizabeth was asked to put the image so that she saw him.

After our meeting, Elizabeth agreed to go out for a walk with his caregiver and children. For the first time in the last few days.

With Elizabeth we continue to meet and work on the speech. But the more you do it, what I call “exercise for relaxation”. The music we present that you travel on your favorite places.

Elizabeth is a very practical, active and modern man. She’s from that world where “all these psychological things” did not love. At one meeting, she said, “I feel so safe after we will work on, I cry less, appear power.”

I think all this is important to her, and thank God that it turns out. Rehabilitation important regular exercise is for the cumulative effect. But my personal experience says that the peak experience, even if it is occasional, is also a very important result. He will remain in emotional memory in the brain as a prop, like the belief: “Yes, and in my present condition, I can feel peace and comfort.”

To call and hear that voice and speech were not worse

We have ward, whose name is Hope. She is 67 years old. Her husband, two children. Form of the disease – bulbar. Impaired speech, swallowing, breathing. Itself moves.

Hope contacted the Service and asked me to do her exercises, to support speech. Almost all of the first classes we talked about the disease through music “on death”. We cried. Was playing the melodies of songs that have influenced her life.

At one meeting talking about the resources and built the list of songs that about “joyful, happy, and healthy Hope.” However, it is still interspersed with conversations about the deterioration of the speech, about his numb hand.

Hope asked me: “what others?” “All different” – honestly I replied. And talked about the people who did exercises and found in it a reason to live. It helps if you do not improve the condition, then keep it on the same level.

I think we have for people with the BASS partly as an encyclopedic source, as people who saw “many with the BASS” and you can share it.

Hope very Executive. She began to perform breathing and vocal exercises that I showed her. And I love when she says: “Mary, when I am doing exercise, I find it easier to talk throughout the day, but otherwise, no exercise, speech like no.” And even nicer to call her once a month and hear that voice, speech (intelligibility and nasality) does not become worse.

Hope and her husband taught me one important thing – to accept gratitude and care. After class they always give me coffee. This is our ritual.

Somehow after classes Hope gave me tea instead of coffee. Usually silent husband suddenly stopped her: “Well, what do you drink? Did you forget that? It is also in our coffee loves!” It really touched me. It’s about the relationships that we have developed, about the fact that I give, but they give, too, care. All of us is important.

Lessons charges

Taught me wards? Nothing to do tomorrow. Corny, but I realized that working in the Service BASS. I went to the woman, her name was Natalia. Our last meeting was before the New year. I promised to come right after the holidays. 2 Jan called and on 4 January it was too late. Natalia did not.

Second. No one can replace family and friends. We talked about this with our nurse Jana Batmanova. No matter how we help, no matter what we do, people will always be waiting for their loved ones that they held him by the hand. And we – the staff of the Services – simply comfort along the way. We provide a feeling of support and joy. When suddenly you feel that people were filled with meetings with you and you do not need him anymore, that’s great, too.

Third. It is important to remember about the “small things”. We’re talking to people about what motivates them and happy for what I still want to live. And it’s not just children and grandchildren, but “I’ve always loved to sew but did not have time”, “always wanted to write a book, but there was no time”.

Fourth. It’s about parents. Almost all of our patients with the BASS being over the age of 40-50 years. When they speak, what songs have impacted their lives, reminisce about youth, about the time in which I lived, but my parents lived, I remember them. After such meetings I try to call their parents. And for that, I thank our wards.

Fifth. Don’t need special talent or special effort to help the person. Sometimes it is enough just to be near and give a space where people can talk about their pain, about fear, about death, about life. No need to rate, comment. Just be quiet, to hold his hand.

I always ask myself: have I fulfilled my role as a specialist? Reached the goal of rehabilitation support speech, breathing, swallowing, movement, psychological and emotional support? If you come to man, we only did three exercises, and then had a long talk and cry? Probably made up, if after that people became quieter to communicate with their children and friends – at least one day – just wanted to go for a walk.

Then, why do I specialist? It’s just human. This can be done by anyone. But it is important joint reflection, the way you understand the lives of these people as your heart with them.

In many ways these traditions laid Natalia Semin, when he founded the help Desk, and support and continues their current leader Anna Kasyanova.

Today, the Service is helping people with als oversees more than 700 patients. Let’s help to improve their quality of life, give them moments of joy, comfort and peace of mind, relief of pain and suffering. The service is helping people with als is a joint project of the charity Fund “living now”, the hospital of St. Nicholas. Alexis Metropolitan of Moscow and Orthodox service of assistance “Mercy”.

Photo: Olga Itbelieve

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