John was born prematurely in the 1950’s weighing less than 1kg. His chances of survival were slim but John not only survived he went on to lead a very active physical lifestyle, admitting himself that he has always been a risk taker. John has abseiled with the marines and has had a keen interest in sailing. Another of John’s passions since he was seventeen is kite flying, and over the years he has had approximately thirty-six kites that have been made for him by people from all over the world.
“It’s over a year since I’ve flown a kite properly and I’m still struggling, I’ve never found anything to replace it. It was such a part of my mental stability as well. I always flew big kites about 12 feet across. I think if I had been paraplegic they would classify me as having death or glory syndrome, I was always off the wall”.
As John is an intentionally physical person he has found it difficult to adjust to not being able to do these things anymore. John has a lot of damage to his neck due to years of standing transfers taking his weight through his arms. “It’s so badly worn, that’s why I have to be hoisted now, because it’s too far gone for surgery. They say if it does go properly I will be paralysed”.
John spent his working life helping families of children with multiple and profound impairments. He would help them to achieve whole house adaptions by working with Occupational Therapists and housing officers. John also made sure that they looked at the whole family and not just the child in isolation.
“There were so many cases where families would receive masses of equipment and adaptations which wouldn’t be used as the rest of the family were not happy with it”.
John found out about Simple Stuff Works from his physical health worker who has worked with John for thirteen years. John says that “she works with pressure rather that stretching. She is very good at seeing when a body isn’t straight and putting it in the right position. We slowed down the deterioration of my body considerably but recently we have both felt that I was getting increasingly uncomfortable, and my body was getting gradually into a much more twisted shape. As she also works with children with similar conditions, she suddenly realised that that’s what I need now”. In the past John has tried different air mattresses and using cushions between his knees, but nothing really worked.
Sarah said “Spending time with John has been fantastic, we have laughed, shed the odd tear and heard first-hand what an impact our equipment can have on an individual’s pain levels, sleep and quality of life. We’ve also eaten wonderful food, flown a kite, and generally had a ball. Who could ask for more from their work?”
Anna said “John is a brilliant man with a real passion for life. To be able to support him to be a little more comfortable through the use of our equipment has meant the world to us. Since meeting him we also think that we have found a friend for life!”
Of the Simple Stuff Works equipment John says “If you don’t get comfortable equipment that gets the body as straight and aligned as possible, you can take all the drugs under the sun and long term they are not going to help with the speech or the swallow.
This is why firms like Simple Stuff Works are so important, it is simple, it does work and their whole reason for being is about comfort and putting people back into a natural shape. I haven’t slept properly since I was ten and I know already that this is going to help with my sleep. I thought that it would feel weird, but it feels absolutely right. If there was one thing that I had to say it would be that this is a big part of having a quality of life again”.
My twisted body
gnarled and tired like an old vine
simply cries enough
a child locked in with no speech
implores our realignment.
My body now straight
opens me like a flower
in the gentle sun
my sleep system hugging me
like an old friend always there
relieves discomfort and pain
Simple Stuff just Works.
My psyche now free
from struggle with my body
simply clears and calms
and the peace of sleep
impossible gift now mine.