Who am I

Patrick (me)

I am Patrick and run this website and I was born in 1954. These days 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)

Diagnosis

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.

Secondary Progressive

At diagnosis MS was a 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.

The beginning

I am convinced my multiple sclerosis started in 1972, my bladder misbehave. 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

Now

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.

Drug Trials

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.

Associated articles

MuSmate

FES

Travelscoot

Letter to Multiple Sclerosis

December 2017

2 responses to “Who am I”

  1. Elizabeth says:

    Patrick, As a ‘fellow, well-meaning MSer,
    1. Thanks for sharing your story, especially as a man with MS…, I’ll follow your story, although my own is different obviously.

    I am a m50 year old woman, who was apparently disgnosed with MS in August 1988!

    Ido not remember being diagnosed with RR MS…, I wander what my medical records say. I was keen to move to London, rather than return to Northampton having completed my University studied( economics BA Nottingham University…. Insteas I moved into a room in a shared house in Brixton….

    In terms of MS ‘symptomsI still remember reporting an unusual visual presentation to my parents’ GP, but this would have been a very long time ago: 1978 Mayr

    My helpful, Ihope question now Patrick is, what, if anything can I do from here on in?…Though fairly well qualified, I am NOT a confident ‘people’ person….

    • Hello Elizabeth,

      Like you I too was diagnosed a long time ago and it didn’t really affect me until about 2005. I think the most important thing is to make people understand how MS affects the mind and the body and the fact that it’s a progressive disease with no known cure.

      Nearly everyone knows or has known someone with the disease but really knows very very little about the impact of the disease and why it varies so much from person to person. So your mission is very simple, just make sure people know more about multiple sclerosis.

      Good luck

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