Who am I
How it all started
I am convinced my multiple sclerosis started in 1972, my bladder misbehaved, I was 18 at the time, I didn’t think about it again. In 1979 I had a major bladder disaster, iblamed the pressure of work and fatigue as the reason for the problem. I had another relapse a few days later then the problem went away. I continued to have tiny relapses sporadically over the next 15 years but being a bloke I ignored them.
In 1994 I visited my doctor because I had double vision. Several months later I was diagnosed with multiple sclerosis. I had no idea what this meant and in those days there was almost no help for people who had been diagnosed. The double vision only affected me when I was physically exhausted. Another issue, the grass was a different shade of green depending which eye I looked through.
At this stage I was still in the relapsing remittign stage but in there were no drugs to reduce progression. I missed that boat.
At diagnosis MS was subject I joked about at dinner parties and was otherwise ignored. In about 2000 I began to notice little irreversible changes in my body, for example when walking over rough ground my left leg started to drag . By now I had secondary progressive multiple sclerosis. Since 1999 the MS has changed me from someone who was reasonably fit, I could do a 16 mile dog walk into someone who cannot walk more than a few yards unaided.
From the waist up I appear to be a perfectly healthy person. I have serious foot drop in the left leg and I have to use a MuSmate. The moment I try to walk you will notice a total lack of co-ordination in my left foot. I am now referred to as a frequent faller, personally I blame the balance. My bladder control is not good, in fact I have to do Intermittent Self Catheterisation (ISC). Just recently I received Botox and that was a huge elephant kicked out of the room. These days I have to use a mobility scooter, its called a Travelscoot or The Trike. A rollator is essential to walk around the house and garden.
SPMS is progressing slowly but inexorably. I had to stop my work as a computer consultant in January 2012. I was on the ASCEND trial 2012 to 2014, it is a double blind randomised trial so nobody knows if its the real thing or not. Tysabri was being trialed on people with SPMS to find out if it slows progression. I am sure I’m on a placebo but my wife thinks I am receiving the real thing. The results were inconclusive
I enrolled for the MS SMART in December 2015 and I will complete it in November 2017. It is a 2 year drug trial to investigate repurposing an existing drug to reduce neuro degeneration. Hopefully the results will be published in the autumn of 2018. It is a long slow process.
Treatment is gettign better but I always seem to be one step behind 🙁