FAIR FOR RARE: David Napier’s Story
Transformation. Funny actually, I have been doing that all my life, now inclusion that is a different story, it is a work in progress for all of us. I was born in Scotland in 1947, which would make me 70 years old. I was the middle child of two brothers and two sisters.
In 1963, I emigrated with my parents and younger brother and sister to Australia. During that time, I had gained a Diploma in Office Management at Sydney Technical College now UTS, I now also hold a Diploma in Transport Management.
In 1970, I decided to take a trip back to Scotland, this trip was to be of short duration, as I had a good job to come back to in Australia. One day after arriving back in Scotland I met my soon to be wife Doreen and that changed my life forever. We got married and had two children a girl and a boy and in 1988 we all came back to Australia.
It was then that I started to have problems with my back, which meant I had to give up work and as this progressed Doreen had to give up work too and become my full-time carer. About 14 years ago my health took a real turn for the worse! I ended up in hospital for eight days, the opinion at that time I had a severe B12 deficiency which meant having regular injections and I was told your driving days were over.
I went looking for a neurologist myself using the internet and I found a consultant neurologist - finally I had some hope. We met in December 2010, I was told that I had Stiff Person Syndrome, plus some other neurological deficits, but that it was only a mild case, so medication was prescribed and I started to get on with my life.
Then in 2012 the wheels fell off, very severe uncontrollable spasms in my legs and feet started to invert them from vertical to almost horizontal, and I started having seizures. Things became so bad I presented to hospital in incredible pain. I was transferred to a larger hospital with specialised care. I was the first person in twelve years to present with a similar condition, and there I spent three weeks having test after test and receiving medication to relieve the spasms, and then my hands and arms began to invert, I had paralysis.
When I was stable I was transferred to a Rehabilitation Unit. I then begin the task of learning to walk again, I had no idea just how hard that would be, after five weeks I could go home. After 56 days in hospitals, it took a further six months before I could walk without thinking about it, but only in the house. The internet has become my way of sharing with people all over the world who have similar type conditions. Many have become true friends and without them, the journey would have been impossible. I now help to run a group of over 1500 people worldwide because the condition I have is similar to Jerking Stiff Person Syndrome that effects one in one million people.
I have since become a strong advocate for rare diseases and some of my proudest moments include founding Camden Stroke Recovery Club 11 years ago, and being given the honour of being a Don’t Dis My Ability Ambassador in 2013. That was special for me because two of my heroes had been earlier ambassadors who had told me to get off my butt, get out there and make a difference.
We can transform this world, we can work each day to make this a more inclusive society in which to live, if we have the guts to do it.
You can hear David's Story on this YouTube link