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Steve’s story - Living with ALS

Updated: Jul 27, 2020

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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