Patrick is my guest blogger today – although MS has been in his life since 1979, it was only in 1999 that it changed from mild RRMS to SPMS:
Like nearly all of you I’m an MSer. My first relapse was in 1979. I was 25 and newly married. A problem occurred, my bladder emptied itself and I had no control over the event, there was a feeling of total helplessness.
The nightmare scenario did not return. Being a typical bloke I did not go to a doctor, I put the whole thing down to stress of trying to be an antiques dealer.
Next problem was 1994 when I had double vision. I was frog-marched to my doctor who referred me to a neurology consultant. Meanwhile the double vision went away but I was in the NHS system. Six months later the consultant said I had multiple sclerosis and to book another appointment for 6 months down the line.
Back at home I looked up ‘multiple sclerosis’ in the Encyclopaedia Britannica. I learnt it was an incurable disease affecting the nervous system. I was none the wiser.
Someone at work suggested I go to the local MS Therapy Centre near Aylesbury. There I picked up pamphlets from the MS Society and slowly I learned more about the disease that was not affecting me.
In 1999 I went on a 16 mile dog walk around Ashridge estate and cooked supper for the family. Then slowly progressive MS began to emerge, maturing into something that now has a profound effect upon me, my wife, our three children and our friends.
At the start of 2014 I have severe foot drop in my left leg, I can only stumble a few yards without my rollator, my sense of balance has gone AWOL and I have to do intermittent self-catheterisation. I am not allowed to drive and In 2012 I had to give up my career as an international computer geek. What else has MS got in store for me?
Today MS has turned the life of my wife and myself upside down. She helps me to beat it. I talk MS to students, nurses, and anyone else who will listen to me. I also run the website www.aid4disabled.com. Through networking I have met a wide range of people who help and encourage me.
Yes MS has forced a complete change in our lives and yet we survive. I’m reasonably content, can still do things that I enjoy but nonetheless I’m hugely frustrated.