Paralysis is a fact of life for the 40,000 people living with spinal cord injury, and it can happen to anyone. For the majority of people, being unable to walk is just another challenge to add to the many other difficulties they face on a daily basis. Pressure ulcers, urinary tract infections and pain are all a daily threat to quality of life, making it hard to 'get on with life'. SMSR is tackling these day to day challenges through research to ensure that individual's with spinal cord injury have the best quality of life possible.
Andrew Downes' Story: told by his wife Cynthia
At 5am on October 9th 2010 Andrew's left hip gave way when he had just got up. I heard a crash in our music room where Andrew composed. He had fallen to the floor and I think our heavy sellotape dispenser had dropped on his head.
I rushed in to the music room and found him unconscious on the floor. I knew his brittle back (caused by his ankylosing spondylitis) could be fractured, but the ambulance drivers were only trained in falls from a height. They did not immobilise him and made him get up and walk down the stairs. Not knowing him, they did not realise that he never normally cried out in pain and they just tried to reassure him and me. The doctors at A&E had no experience with ankylosing spondylitis either and diagnosed a urine infection. When Andrew eventually got to Xray (after 12 hours), the radiographers said that because he couldn't lie flat, they couldn't photograph his spine. On my suggestion, they eventually administered morphine so he could lie on the Xray bed. The doctors in the Emergency Assessment Unit could not decipher the images, so we were told he would have to wait for an MRI scan next morning... We (Paula, David and I) were not allowed to visit next day until 2 pm and so went to visit Anna who was also in hospital, recovering from a hysterectomy. In Anna's ward I got a phone call summoning me to Andrew's hospital. Andrew had broken his back. The diagnosis was too late and Andrew had not been immobilized. He was paralysed from the waist down. A brilliant surgeon at the Royal Orthopaedic hospital in Birmingham put Andrew's back together, but warned us our lives were going to change forever.
Andrew spent 9 months in the Spinal Injury Unit of Stoke Mandeville Hospital. We had a lot of help from the wonderful physiotherapists at the hospital to prepare us: how to transfer into the car from the wheelchair etc
Thanks to the wonderful care at Stoke Mandeville, Andrew returned home and continuing a full life of composing. For his 70th Birthday Year, he would like to raise funds for Stoke Mandeville Spinal Research to say thank you for the wonderful treatment he received and to help other people like him to lead as full a life as possible following a spinal injury.
We are asking people to perform his music during the year of 2020, his 70th Birthday year and to have retiring collections for Stoke Mandeville Spinal Research. Apart from the costs of some venue hires, some musicians, refreshments provided during concerts, and of publicity and programmes, all money will go to the charity.
You are also welcome to simply donate directly to this page.
to find out more and do contact us from there if you want to put on a performance so we can help you with the publicity. You can also see the other performances going on.
All best wishes,
The Downes Family
UPDATE: Andrew Downes sadly fell backwards out of his wheelchair in April 2019 and the paramedics thought he was fine to stay at home. He suffered agonising pain for 3+ weeks before finally getting diagnosed with a broken neck. He has now received excellent care at University Hospital Coventry and will probably be moving to Oswestry for rehabilitation soon. We now need to campaign to get better care and understanding for ankylosing spondylitis sufferers to avoid this happening to others with this condition in the future.
UPDATE 13/08/2019: Andrew is now home and recovering well.