Who am I
I am Patrick and I have advanced multiple sclerosis; I try to lead as active a life as possible but balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple sclerosis (MS)
In 1994 I visited my doctor because I had double vision. Several months later I was diagnosed with relapsing remitting multiple sclerosis. I had no idea what this meant and in those days there was almost no help for people who had been diagnosed and the internet did not exist. 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 there were no drugs to reduce progression. that boat docked several years later.
After diagnosis MS was a subject I joked about at dinner parties and it 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.
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, I blamed 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. Tiny relapses with my bladder happened sporadically over the next 15 years but being a bloke I ignored them
From the waist up I appear to be a perfectly healthy person. I now have serious foot drop in the left leg and I have to use an FES. When it began I used a MusMate to stop my foot dragging along the pavement. 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 work as a freelance computer consultant in January 2012. I was on the ASCEND trial 2012 to 2014, 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. The results were inconclusive and the trial was canned
I enrolled for the MS SMART in December 2015 and I will complete it in November 2017. It was 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 getting better for RRMS but so far there is nothing licenced for SPMS :-(. I am lucky to receive Fampridine that seems to roll back MS by a couple of years.