Diary of a Man with MS

Started in June 2016. Diary of a man with MS is a sporadic report of my life with MS. There are so many ups and downs, twists and turns. Sometimes I think it is worth telling other people about them.

Sometimes I want to keep the story to myself. None the less this whole website is a story of my life especially the tab ‘Living with MS’.

Diary of a man with MS

MS is another piece of baggage that can make the emotional roller-cosaster ride of life even more exciting or should I say daunting as well as frustrating.

An after thought

I have divided the diary section up into years that way it is easier to see what happens and when. I think this makes it more logical.

Unless I am careful this website is going to get too large and unwieldy. Maybe it is there already. Who knows?

Aid4Disabled is nominated as an MS blog

Aid4Disabled is nominated as an MS blog

I’m wary of emails from people or organisations that I have never heard of. I receive an enormous amount of spam email. Its when they begin “Hi Aid4Disabled”, I look no further and press the delete key. Imagine my surprise when an email told me “Aid4Disabled is nominated as an MS blog”. How did it […]

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After finishing the MS-SMART drug trial

After finishing the MS-SMART drug trial

I was a participant in the MS-SMART drug trial. If you look back over the blogs I wrote while I was on the trial my MS didn’t seem to get worse. A big question comes was after finishing the MS-SMART drug trial. Was I on a placebo, a treatment with no active therapeutic effect, or did the […]

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2 comments

My PIP benefits form is in the post

My PIP benefits form is in the post

I am in France it’s a beautiful hot sunny day but I cannot sit outside. Uhtoff’s syndrome has put paid to that little pleasure. Back to the plot. My PIP benefits form is in the post. So relieved that I have finished it. Bit controversial here Why do the DWP need to make their questions […]

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DWP will discover and evaluate what I cannot do

DWP will discover and evaluate what I cannot do

The DWP have kept their side of the bargain. I have received a form so I can explain how my disability affects me. It’s a horror, 40 pages booklet with about 45 questions and statements to be completed. DWP will discover and evaluate what I cannot do. I am then awarded PIP benefits but its […]

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5 comments

Multiple sclerosis has its lesions and inflammation

Multiple sclerosis has its lesions and inflammation

Just when you think there is a glimmer of hope, a tiny twinkle of light at the end of the tunnel, it is surprising how easily that little spark of optimism can be extinguished. Life with nearly every single Long Term Condition can be really rough. Multiple sclerosis has its lesions and inflammation. This causes the […]

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8 comments

Your Disability Living Allowance is ending

Your Disability Living Allowance is ending

It was the usual brown envelope from the DWP with a return address of DWP PO Box 535 Belfast. It’s never an expensive white envelope and it’s never by first-class mail. Their letters always arrive on a Saturday morning just like this one, 21 April 2018. I opened it, the message was very simple, Your […]

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10 comments

Disabled man flies to Prague

Disabled man flies to Prague

I went Prague for a RADAR-CNS conference. I flew with British Airways from London Heathrow airport. When you have mobility problems then travelling anywhere is never easy. Something somewhere is bound to go wrong. Disabled man flies to Prague has a few interesting twists. Nothing is straight forward. There is never any problem riding The […]

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Walking round the supermarket with a trolley

Walking round the supermarket with a trolley

When I started taking Fampridine the physiotherapist was insistent that I take more exercise. I mentioned that I go to the supermarket every day and do the shopping on The Trike (3 wheel light-weight mobility scooter). Her eyes lit up, “I know what you can do” she said. “You ought to consider walking round the supermarket […]

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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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8 comments

Travelscoot for sale

Travelscoot for sale

Travelscoot for sale. Here are details of a Travelscoot that is for sale. It looks to be in very good condition, virtually as new. Battery is included, it is the latest model and there is a reverse gear. The details of the Travelscoot for sale is as as follows. Travelscoot for sale My mother bought […]

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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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12 comments

#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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6 comments

Disabled man sees Iolanthe at the Coliseum

Disabled man sees Iolanthe at the Coliseum

The Wife and I went up to London to see Iolanthe, a Gilbert and Sullivan Operetta performed by the English National Opera (ENO). It was a fantastic performance, bit frothy but we both enjoyed it. You’re probably thinking that we are rolling in money and with rather aristocratic tastes. Nothing could be further from the […]

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Twenty injections within six minutes

Twenty injections within six minutes

It was a year to the day since my previous Botox injections. I was back in the in Uro Neurological surgery in Queen square London for a Botox refill. By now the benefits of my previous Botox injections, sometimes known as botulinum toxin-A, had worn off. If the truth of the matter were known my bladder was […]

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7 comments

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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9 comments

Looking on the bright side of life

Looking on the bright side of life

Everyone who has progressive MS has their own unique set of difficulties. The issues can’t be papered over, they are with you day in, day out, all day and every day. I have one visible problem, mobility or balance and an invisible problem, my bladder. Of course I’m always looking on the bright side of […]

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Can the elephant stay out of the room

Can the elephant stay out of the room

In February 2017 I wrote a blog about getting Botox injections for my bladder. Looking back it makes an enormous difference to my life. It changed, totally changed. Suddenly I did not have to worry about finding the loo or embarrassing myself. It was as if an enormous elephant had left the room. Describe it […]

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9 comments

Does my disability make me worth less?

Does my disability make me worth less?

So Christmas is done and dusted for another year. Decorations have been taken down and put in the loft. The Boy Scouts have collected the tree and recycled it. We’ve even managed to empty the fridge. Now wouldn’t it be lovely if I could just pack up my MS and store that in the loft […]

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13 comments

Who am I

Who am I

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 […]

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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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Three weeks of taking Fampridine

Three weeks of taking Fampridine

Friday, 22 December, I think that date will be etched on my memory for many years. Three weeks of taking Fampridine. I knew it’d helped me but the icy test was going to be measuring my new walking speed. Had Fampridine increased my walking speed enough for me to receive it on prescription? Three weeks […]

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7 comments

My MS clock has gone back a couple of years

My MS clock has gone back a couple of years

I started taking Fampridine just over a couple of weeks ago. Yes, YEs, YES it really has worked. Right now I’m not too sure if my walking speed has increased sufficiently to receive the drug beyond the trial period. That it will be a bummer. Put walking speed to one side then so many other […]

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8 comments

Will Fampridine improve my quality of life

Will Fampridine improve my quality of life

The physiotherapists at Queens Square neurological hospital offered me Fampridine in the summer of 2017. I knew that Fampridine also known as Fampyra could improve my walking speed. Sadly it doesn’t make the process any safer. None the less I reckoned it was worth trying out. Will Fampridine improve my quality of life When I […]

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11 comments

Dragon Dictation Software

Dragon Dictation Software

Over the last couple of years MS has stolen the dexterity from my fingers. Years ago I tried to teach myself touch typing with no success. My finger tips are numb, thanks MS, so I can’t feel the bar on the keyboard for the letters J and F. I struggled on, typing was horribly erratic […]

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10 comments

Getting the best from my life

Getting the best from my life

Enjoying life, it is the reason to get out of bed each morning. Okay I do have a few problems but hey who doesn’t? I’ve had multiple sclerosis for over two thirds of my life and now I’m medically retired. I’m still learning the art of getting the best from my life. The biggest game […]

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13 comments

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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Nobody mentioned grab rails

Nobody mentioned grab rails

I guess a few of you who are reading this have got that irritating little disease, multiple sclerosis. It’s the way it advances. Step by step it creeps up on you. It’s funny how something that wasn’t a problem changes and becomes a problem. Even worse, suddenly its an ‘in your face’ problem. We had […]

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6 comments

MS-SMART drug trial after 92 weeks

MS-SMART drug trial after 92 weeks

Its almost 92 weeks since I started the MS-SMART drug trial. The time has flown by. The trial as been straight forward. Just pop a pill every morning and again in the evening. Well almost every evening, sometimes when I go out in the evening I forget to take one with me and when I get […]

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5 comments

Disabled access is not a tick box exercise

Disabled access is not a tick box exercise

Access and facilities for physically disabled people are needed today and why ever not? It would be so unreasonable in this day and age to exclude the physically disabled from our activities. From my experience disabled access is turning into a tick box exercise. Remember disabled access is not a tick box exercise. Disabled access […]

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12 comments

Paying people who receive benefits

Paying people who receive benefits

I recently attended a one day seminar on ‘paying people who receive benefits’. Typically these people are service users. How can I condense an intense six hour seminar into 500 words? Not easy, so here are a few important points. Paying people who receive benefits is not straight forward. The rules are complex. Also the […]

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2 comments

Toastmasters humorous table topics competition

Toastmasters humorous table topics competition

I have been a member of Toastmasters for several years. The first Toastmasters competition for me and I had reached the second round of the Toastmasters humorous table topics competition. Toastmasters humorous Table Topics competition Table topics, you either hate ‘em or love ‘em. Just make an impromptu unrehearsed speech on a random topic lasting […]

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MS society walk

MS society walk

On Sunday, 24 September I went to Battersea Park in London to take part in the MS society walk. I left the house at a 8:45, caught the train to Euston and arrived at the start just after 11. I had hoped to be there earlier. Getting to Battersea Park from Euston station by public […]

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8 comments

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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FCAROLYN silk eye patch

FCAROLYN silk eye patch

Double vision is possibly my biggest hidden disability. In April 2015 it reached a critical point. My optician could no longer correct the problem using prisms in my glasses. He came up with an ingenious solution that still I use today but it requires specific glasses frames. I recently discovered the FCAROLYN Silk Eye Patch […]

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2 comments

Every morning I have to stretch my stiff muscles

Every morning I have to stretch my stiff muscles

Getting straight out of bed and immediately walking into the bathroom, don’t make me laugh :-). Every morning I have to stretch my stiff muscles. What did I do in my sleep? Was I racing Mo Farah last night or was it just a nightmare? Whatever it was, it has left my muscles scrunched up. An […]

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6 comments

Mobility scooter needs a bus permit

Mobility scooter needs a bus permit

In late July as I was getting onto a bus at High Wycombe the Arriva bus driver said “The mobility scooter needs a bus permit. Can I see it” Arriva are responsible for running all the buses in the towns close to where I live. I have to use the buses because double vision makes driving […]

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14 comments