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?

I am physically disabled but I still travel

I am physically disabled but I still travel

When I was working I travelled all over the world then medical retirement kicked me in the groin. Life as I knew it suddenly changed. Occasionally I still get the urge to travel, this time me and The Wife went to Australia. I am physically disabled but I still travel. Cut the stress I have just […]

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7 comments

VELA Salsa sit-stand chair

VELA Salsa sit-stand chair

People have sat on something since they descended from the trees. A three legged stool is probably the earliest form of seat furniture, no back or arm rests and always stable though not necessarily level. The Vela Salsa sit-stand chair is at the opposite end of the spectrum. I want to tell you why the […]

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10 comments

DWP decide my Personal Independence Payment

DWP decide my Personal Independence Payment

This morning I received a brown envelope from Belfast. I knew the contents straightaway, the DWP had made a decision. I had already read the assessor ‘s report. How will the DWP decide my Personal Independence Payment benefits. A normal life I did not know if the DWP decision was going to be a mere […]

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Assessment for my PIP benefits

Assessment for my PIP benefits

A week after my face-to-face assessment I phoned up the DWP and requested a copy of the assessor’s report. I was told to expect it within 7 to 10 working days. Two weeks later I received a letter from the DWP which said they now had enough information to be able to make a decision […]

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4 comments

Three vignettes from the last few days

Three vignettes from the last few days

A change to the usual post; three vignettes from the last few days. August was supposed to be a quiet month but there has been something happening nearly every day. Summer is now over and the days are getting noticeably shorter. The ‘to do’ list was supposed to shrink, instead it has grown. Looking ahead Next […]

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handSteady drinking mug

handSteady drinking mug

Do you have such a severe tremor  that drinking from a normal cup is difficult?  If you are unlucky enough to have a tremor in the arms weak wrists or  weak hands? If that is the case then a handSteady drinking mug could be the solution. Incidentally it will also help if you have difficulty […]

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Over 30 degrees Celsius this summer

Over 30 degrees Celsius this summer

The summer of 1976, was so hot that I got a good suntan in Aberdeen. A student job, I was working outdoors every day. In Hertfordshire the temperature has frequently been over 30 degrees Celsius this summer. At times  it’s been far too hot, stuffy and airless for my own comfort. Let me explain Don’t get […]

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Ideal solution to an FES problem

Ideal solution to an FES problem

My problem is simple. How do I safely carry my Functional Electrical Stimulator (FES)? So many people with multiple sclerosis have foot drop and must use a FES to help with walking. I think Man’s Sports Waist Mobile Phone Pouch (Brown) keeps the FES is safe, secure as Idewell as easy to access. I honestly would not be […]

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Universal Holder For A Smartphone

Universal Holder For A Smartphone

Almost all of us are addicted to or owner of a smart phones I find the Google Maps utility very useful especially when going to places in London on The Trike. It is very easy to attach the Universal Holder for a Smartphone to a Travelscoot and now it is indispensable. Addicted, no, I just love some gadgets. […]

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2 comments

Trabasack Curved Lap Tray and Bag

Trabasack Curved Lap Tray and Bag

Trabasack Curved LapTray and Bag is designed for use on a wheelchair. Its a new concept, beanbag lap tray that you carriy like a bag and use it on your lap whenever you need it. The tray inventor is a wheelchair user who fully understands what is necessary to make it useful. You could say it […]

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PIP face to face assessment

PIP face to face assessment

Finally Wednesday 1 August has arrived, it’s my PIP face to face assessment. I had not slept well the previous night. This was not just worry and stress, that irascible little friend MS was in the mix. I just could not get out of bed as early as usual. It was 4 hours later than […]

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25 comments

I have discovered sitting-down gardening

I have discovered sitting-down gardening

I have had to discover a different way to garden. It is because I am disabled by MS and things had to change. It is now ‘plastic-lined’ boxes type of gardening. No more digging holes with a spade or bending over to pull up weeds. I have discovered sitting-down gardening.  Perhaps it discovered me, who […]

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4 comments

MS Society introduces the 1 Km walk

MS Society introduces the 1 Km walk

Sport is an area of society in which ableism is seen only too often. Finally the MS Society is embracing people with progressive MS and mobility issues in a positive way. It is only within the last ten to fifteen years that Western society recognises athletes with disabilities. Look at the success of the recent […]

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5 comments

One Hell of a Day

One Hell of a Day

There have been some cracking days this summer. Yup, it has been a bit hot but I have really enjoyed getting dressed in just a T-shirt and a pair of shorts. Like all good things there will be an end. I had a bit of a hiccup on Monday 9th July. It really was one […]

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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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6 comments

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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5 comments

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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6 comments

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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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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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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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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6 comments

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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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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2 comments

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