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.
I very good guest blog. I had not heard of Patrick’s website before, after a quick perusal it looks very useful.
My other half has MS and got a parking ticket the other day for parking in a disabled bay without displaying a blue badge – she had the badge in her handbag the whole time and simply forgot to display it in the car, something she has done hundreds of times. Our local council has recently taken over control of parking fines, so my wife’s penalty for this misdemeanour was a £70 fine. We are appealing the penalty and to be honest we would be the first to complain if someone parked in a disabled bay without a blue badge. Just wanted to draw everyone’s attention to what these councils are charging nowadays. By the way it is illegal for councils to raise revenue in this way, however several are now raising millions of pounds every year from parking, apparently without censure. Just saying!
Wow, £70 is steep, and glad you’re appealing. The problem with MS is cog fog, so forgetting to put a blue badge up can be seen as part of the disability?
Patrick’s website is great. So inspiring – great to see people use their energy to help other people. I’m impressed!
x
Keep the Blue Badge in the glove compartment, no chance of it being left at home & better chance of it being displayed. My wife always reminds me to put it and the clock onto the dashboard
£70, lot of dosh, good luck with the appeal
PS if you go onto my website please ‘Like’ me on Aid4disabled facebook page
Patrick
Good idea!
x
Good post, Patrick. As for what’s next, I guess that’s the eternal question for those of us with MS…
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