‘Amyotrophic lateral sclerosis’, or ALS (also known as ‘motor neuron disease’ [MND]), is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. Steve came to music therapy in the last stages of ALS, where he had minimal movement in his body and his speech was difficult to understand. Research has shown that people living with ALS found that active music therapy increased communication, improved quality of life and decreased the physical symptoms of the disease.
So our sessions were at first filled with vocal exercises to help activate the speech mechanism and support maximum breath control so that Steve could be heard. As the disease continued to impact his system, we used some neurological music therapy (NMT) approaches for Steve to maintain muscle tone in his legs by getting up from his wheelchair and walking a few steps each day; the chosen recorded music provided impetus and momentum for Steve to focus and find a rhythm to sustain his movements.
Steve was a courageous and determined soul - he had a wife and a young daughter and he wanted to live! As the disease progressed further he agreed to turn more to the emotional impact of his condition and he shared that he had begun to write a poem that told his story. As a way to support this process, we discussed Steve’s favorite music and songs and he identified ‘Sweet Dreams’ by the Eurythmics. This became the template for Steve’s words to become a song. I recorded these powerful and moving words for Steve to share both his struggle and also his remarkable courage and resilience:
“I must never be defeated. I shall not lose the will. No, I must not be defeated, there is life to be lived here still!”
I MUST NEVER BE DEFEATED....
the first sign of things going wrong
falling down in random places
my right hand not working properly
can’t do buttons or tie my laces
please give me the serenity
to accept what I cannot do
the courage to change what I can
wisdom to know the difference too
after testing for lymphoma
" I have good news!" the doctor said
but I had a funny feeling
that still filled me full of dread
the choice is simple when you look
you’ve got to laugh, you’ve got to cry
you’ve got to make the most of life
although it’s hard, you have to try
(CHORUS)
I must never be defeated
I shall not lose the will
no I must not be defeated
there is life to be lived here still
"I"m 95 percent certain"
the mnd/asl specialist said
I looked down at my wife and me
from several feet above our heads
I can cope with the frustration
I can even deal with the fears
but I just cannot stand the thought
of leaving them, and all their tears
now I can barely walk or talk
things are progressing, I confess
it seems like things cannot get worse
although I know its relentless
but this is just not my story
this isn’t how it’s supposed to be
no this was never my story
this pack of symptoms is not me
(CHORUS)
I must never be defeated
I shall not lose the will
no I must not be defeated
there is life to be lived here still
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