Multiple Sclerosis

I’m full of good intentions

I’m full of good intentions

I remember the happy blue sky of summer, do you? Now a large black cloud fills my sky. Where are those happy days? I’m full of good intentions but there is always an excuse. The black cloud will soon blow away. Multiple sclerosis is to blame for the black cloud. Now I have no motivation […]

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I do feel isolated by my multiple sclerosis

I do feel isolated by my multiple sclerosis

As my MS gets worse my world gets smaller and smaller? My MS and I cohabited quite happily for 35 years. Okay we had the odd problem but basically we had a healthy relationship. About 10 years ago the impact of MS on my life started to grow. I do feel isolated by my multiple […]

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Hottest day of the year

Hottest day of the year

It was the day that people with Multiple Sclerosis dread, total wipe-out by heat on Thursday25 June, the hottest day of the year. All motivation left my body as if by magic and my energy reserves evaporated. I felt as if I was walking through treacle. Life on that super-hot day was an endurance test. […]

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My long journey with multiple sclerosis

My long journey with multiple sclerosis

This is the story of 45 years of my life living with multiple sclerosis as we both grew up. I did not piece the whole story together until I took medical retirement in 2012. My long journey with multiple sclerosis. My long journey with multiple sclerosis It all started in 1972 and I was almost […]

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My first job interview since 2012

My first job interview since 2012

Recently I received an email from a charity that wanted to interview me for a zero hour contract position. I have advanced multiple sclerosis and I cannot walk unaided which I disclosed on the application form. This was going to be my first job interview since 2012. My MS blew the last one in 2012 […]

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Making an annual wish to improve my life

Making an annual wish to improve my life

Back in the day I would make a resolution every New Year’s eve. Its such an easy thing to say when I’ve drunk a glass a glass or two too many. Everyone else has made one so why shouldn’t I? Now I’m a bit softer in the stomach and wiser in the head so I’ve […]

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Call it advanced multiple sclerosis

Call it advanced multiple sclerosis

Soon I’m going to be 64 so not quite as nimble as I was. Age doesn’t stop me having a social life. I go to the theatre and museums in London. Meet friends in one of the numerous coffee shops in our town. I go to the supermarket, buy the food and then cook dinner. […]

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Creating my own social capital

Creating my own social capital

Social capital is happening all the time around us. Reading this blog is social capital. Just being with other people gives you social capital. I expect you’ve already gone to Google and typed in those two words, billions of hits. Now I am creating my own social capital. Creating my own social capital I won’t […]

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A progressive disease is one that gets worse

A progressive disease is one that gets worse

A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences? Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis? I […]

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MS for over 70 percent of my life

MS for over 70 percent of my life

I am 63, born in 1954. I have lived with Multiple Sclerosis for 45 years, that’s a scary thought. It started in 1972 but I was not diagnosed until 1995. It morphed to secondary progressive or advanced MS in about 2000. I took medical retirement in 2012. I have had MS for over 70 percent of […]

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Multiple sclerosis is such an unpredictable disease

Multiple sclerosis is such an unpredictable disease

I am getting my life back onto an even keel. Botox is working, Fampridine looks like it’s a winner and spring is in the air. Just when I think all is looking hunky dory and everything is under control ,BANG, something hit me in the solar plexus. Multiple sclerosis is such an unpredictable disease. It […]

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#ThinkHand Campaign for Advanced Multiple Sclerosis

#ThinkHand Campaign for Advanced Multiple Sclerosis

I attended the launch of the #ThinkHand campaign for advanced multiple sclerosis by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February. I have advanced MS and this is a big step in the right direction. My multiple sclerosis I can still walk, but it is a very slow walk and […]

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Will the lumbar puncture hurt?

Will the lumbar puncture hurt?

I have now had four lumbar punctures. A small sample of fluid is taken from the spinal cord to measure the activity of multiple sclerosis. Think lumbar puncture and my hair stands on end. The idea of a syringe going into my spine and thinking ‘will the lumbar puncture hurt?’ are two concepts I don’t like […]

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The Website aid4disabled.com

The Website aid4disabled.com

There are numerous multiple sclerosis (MS) websites. There are those run by large organisations and there are ones like this one, run by one man and his dog. I hope this one is different and makes you curious. The main aims of the website Aid4disabled.com are to provide two different services. The two main functions […]

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Just another little fall

Just another little fall

In the kitchen I must use a stool on wheels. The Wife and I were cooking supper last Sunday and everything was getting a bit fraught. Not enough pairs of hands to prepare everything. I moved forward on my stool but a wheel got stuck in the grouting between two floor tiles. The stool stopped […]

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Expert by Experience

Expert by Experience

I have never liked the term ‘Service User’. Would I rather be called a ‘Client’ or a ‘Patient’? No I don’t like them either. I think the term ‘Co Worker’ is okay but not perfect. I do like the idea of Expert by Experience. It is a positive description. In the video just below I […]

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Totally unrestricted and able to move easily

Totally unrestricted and able to move easily

There was a wonderful time when I had felt totally unrestricted and able to move easily. Even on the fateful day in 1995 when the consultant diagnosed me with multiple sclerosis I was just a normal guy. Multiple sclerosis, I had never heard of it. I had to look it up in an encyclopaedia and […]

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What would I like returned to me by Multiple Sclerosis?

What would I like returned to me by Multiple Sclerosis?

What would I like returned to me by Multiple Sclerosis? I’m talking about basic abilities, ones I have lost for ever. The list is far too long to bore you. In my dreams there is only I would like back. I’m sure it’s something lots of people take for granted. Right now I am really […]

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Going away for a short break

Going away for a short break

Going away for a short break used to be so easy. The hardest part was deciding where to go. The wife and I would finally agree on a place. From then on it was a simple process. Throw a few clothes into a suitcase, grab a book, car keys, wallet and the cheque book and […]

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Multiple Sclerosis Specialist Advice

Multiple Sclerosis Specialist Advice

I have been following blogs and visiting MS forums recently. Yup these have all been MS related, no surprises there. There was one startling conclusion that I have come to. People seem happy to live with their problems and reluctant to talk to MS specialists. MS sufferers need to find someone who can give Multiple […]

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Information you need to know

Information you need to know

I am going to tell you information that I think is important. One is about your consultant and the other refers to multiple sclerosis and the two are linked. This is information that my consultant Professor Giovannoni talks about in his blog and I feel it is vitally important that other people know this. It’s […]

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MS Awareness

MS Awareness

Multiple Sclerosis, so many people know the words but they are unaware how MS affects a person? So many people do not know the impact this disease has upon people’s lives. It usually strikes when you are young and your life is in front of you. Worst of all, it is a progressive disease. The […]

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Chilterns MS Centre

Chilterns MS Centre

Chilterns MS Centre moved into a new building in 2013. It used to be in a small prefab concrete single story building. Money was raised to build a much larger new two storey Chilterns MS Centre. The annual cost of running the new building has exceeded expectations. Turn it into a viable business Robert Breakwell, […]

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Multiple sclerosis patients are missing out on drugs

Multiple sclerosis patients are missing out on drugs

The BBC has published a report that shows too many multiple sclerosis (MS) patients are missing out on drugs. A survey of more than 10,000 adults with MS showed that many were missing out on the seven licensed medicines approved for use. Access to disease modifying treatments (DMT) varied across the four countries of the […]

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Managing Day to Day Life With Multiple Sclerosis

Managing Day to Day Life With Multiple Sclerosis

Managing day to day life with multiple sclerosis is a roller coaster ride. One day you feel fine, the next you feel like a wrinkled balloon. Sometmes its a mental issue other times its a physical problem. Sometimes its both. I have passed the Relapse Remission stage of multiple sclerosis. For me its evolved into Secondary […]

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Independence and Quality of Life

Independence and Quality of Life

I suffer from a progressive disease, I have less stamina now than 6 months ago, everything calls for a greater effort and it will only get worse. A couple of questions Do you think your disease is robbing you of your independence and taking away your quality of life?  What steps are you taking to […]

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Orkney islands highest rate of multiple sclerosis

Orkney islands highest rate of multiple sclerosis

One in every 170 women in the islands has the degenerative neurological disease – and the incidence rate is rising The Orkney Islands in Scotland have the highest recorded incidence of Multiple Sclerosis in the world. This news adds weight to the theory that the absence of sunlight could be a factor. For many years […]

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Multiple sclerosis is not a death sentence

Multiple sclerosis is not a death sentence

Newly diagnosed with MS? For many people receiving a diagnosis is a mixed blessing. Now you have an explanation for those odd things that have been happening to you. You also have an incurable disease that is going to get progressively worse. Do not let MS stop you doing what you enjoy. Slowly your symptoms […]

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Articles published in the MS Press

Articles published in the MS Press

I have had some articles published in Multiple Sclerosis magazines.  They are talking about setting up the website, me, how I cope with disability and the disease. It is essential that I retain my independence and make sure that my quality of life continues to be as good as possible. There are certain things that […]

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A Big Decision

A Big Decision

Its February 2012, the wife and I now realize I can no longer do any more computer consultancy work. It is full time or not at all in the work I do So that door has closed Does this mean retirement? Yes to computer consultancy, now I can put all my energy and time into […]

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