You are here: Steve's story
In 1991 I met my girlfriend (now wife), Jo, whilst at University. We were living in West London, where I worked in IT, when she was offered the chance to study for a PhD in Edinburgh. This opportunity was too good to miss so we moved. After a year or so we saved enough money to buy our first house in 1995. Roughly six months later, I was doing some DIY when I had a small fall from a ladder onto concrete. I knew immediately something was wrong, as my legs just really hurt. I had convinced myself I had either broken my femur or pelvis. With hindsight, I think at this point the ambulance crew suspected a spinal cord injury. I was taken to the Edinburgh Royal Infirmary under police escort where a CT scan confirmed their suspicions, a burst L1 vertebra, which had left bone fragments in my spinal column. At this point in time I had no idea what that meant or the potential life changing consequences.
When I fell, I had an immediate sense of "that doesn't feel right" but I had no idea of the potential life-changing consequences.
The medical team drew pen marks all over my legs to indicate where I did and didn't have sensation. During the next few hours the loss in sensation got progressively worse and they told me they would have to perform emergency surgery. They started making plans for what turned out to be a six-hour operation from a specialist orthopaedic surgeon. Many hours later I awoke in the High Dependency Unit with very some very expensive medical grade titanium rods in my back that were basically holding me together. I had limited mobility and was unable to sit or reach to eat or drink which I found extremely frustrating.
After a day or so I was told that arrangements were being made for me to be transferred to an orthopaedic rehabilitation hospital (not a spinal unit - I didn’t even know what a spinal unit was at this point!). Unbeknown to me, my morphine drip had been stopped and I was transferred via what seemed like an epic ambulance journey. Shortly after we arrived I still vividly recall having a conversation with Jo and being terrified because my dinner, that had been placed in front of me was attacking me and I started screaming my head off. I did not know at the time I was suffering morphine withdrawal symptoms, as all my pain medication had been forgotten about during the transfer!
After all this upheaval I finally had some good news, one of the nurses told me that they had spoken to the doctor, and it was expected that I would be up and about walking again within the week, albeit with a hard plastic jacket on. Obviously, I was very relieved. However, a few days later when the medical team realized that I couldn’t actually feel or move my legs much, the outlook became less bright.
Arrangements were made for me to be transferred to the Queen Elizabeth Spinal Unit in Glasgow. I still had no idea of the longer term outcome and still had a belief I could make a full recovery. It was only after one of the very experienced nurses realised this that she got the Consultant to tell me the brutal truth - that there was almost no chance of any neurological recovery and that I should prepare myself to never walk again and be confined to a wheelchair. My girlfriend and I both hugged each other for what seem like an eternity as we both sobbed and that was essentially day one of a long rehab at the unit.

I strongly believe there will be a cure - it's a matter of if, not when.
The brilliant team at the Spinal Unit taught me everything I would ever need to know, including bath transfers, floor to chair transfer, pool transfers, chair skills, swimming, fitness, getting up a kerb, opening doors, even getting up a few stairs. I cannot praise the team enough for their skill and their patience. This specialist environment for rehab is so important, yet unfortunately it is denied to so many SCI patents due to cuts and bed shortages.
At the time we both coped amazingly well with the situation and I even restarted work, as a Software Developer, whilst still in hospital. Roll forward a few years (quite literally) and Jo and I get married, relocate to Northampton, and have an amazing daughter, Abby, who is now 18. Despite the fact that I am wheelchair-dependent I never really felt held back in any way but, just before Abby started school, I started to get excruciating back pain. It took me months to convince my consultant at Stoke Mandeville that there was something wrong as nothing showed up on any scans. Eventually I realized that a particular movement I did would make a “click” in my back, and when my consultant could feel this he knew that my titanium rods were loose. Unfortunately, removing the titanium implants has left me with acute back pain.
For many years I tried to manage the pain issues with medication, but this never really worked. I then tried facet joint injections where pain relief was applied directly to the spinal joints, and denervation which temporarily killed the nerve endings in my back. These procedures themselves were extremely uncomfortable, and their effects never really lasted long. I gradually started to put on weight, becoming less fit and with hindsight I actually think I started to give up.
Eventually it was suggested that I try Botox injections into my back muscles. I have been on this treatment for a year or two now and it has been a lifesaver. I now play Wheelchair Rugby with the Northampton Saints Wheelchair Rugby Club and regularly hand cycle about 16 miles per day. More recently I have started to swim a km each day and lose some weight. So far this year I have lost 29 kg which gave me the confidence to undertake the 2020 London Marathon on 4th October, for Spinal Research. It was a tremendously difficult challenge but made possible with the support of my family and friends. A big thank you to everyone who has been there for me over the years.

Thank you to all those who support Spinal Research, you are helping to take vital research forward.
What are your short and long term hopes for research?
The central nervous system is so complicated that complete recovery may never be possible, but we should never stop trying. Treatments that would return even a little function or prevent further damage would themselves be life-changing. As I have a background in IT and mathematics, I also strongly believe that technology could provide a cure for spinal cord injuries, as implants can bridge the area of injury and redirect neuronal transmission.
To both SCI sufferers and supporters, I would say never give up. Man’s greatest achievements are always when the outcome seems insurmountable. I would also like to thank all those that support Spinal Research.
Hope for the future
Current research
As Steve mentions, there is considerable research in the field of electronics to improve functional recovery in spinal cord injury, including several clinical trials that we are directly funding. Professor Baker in Newcastle University is developing a wearable electronic device to improve grasp function. Dr Krassioukov at the University of Alberta is using non-invasive electrodes to treat bladder, bowel and sexual dysfunction in those with SCI. Many other similar studies are ongoing and offer tangible future treatment for recovery of function.