Patrick’s Blog

I’m Patrick and I run this website. This is a rambling series of articles based around my life disabled with multiple sclerosis (M)S & how I cope. It became so big that I have had to break it down into small groups which you will see on the right hand side.

I am an optimist and like to see the happier side of life. I hope this comes through in these articles on my life with MSNo one likes a person who does not smile

Would  a spiky ball foot massage help me with my balance?

Would  a spiky ball foot massage help me with my balance?

I was toppling onto the floor far too often and I could see a wheelchair hovering over me 🙁 So, I arranged to see a physiotherapist at the Chilterns MS Therapy centre. At the start of every appointment the physiotherapist massaged my feet and ankles with a spiky ball to improve my balance.  Would  a […]

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Medical retirement sounds relaxing until it happens

Medical retirement sounds relaxing until it happens

Imagine I’m 10 years younger, a mere 56 but still with advanced MS. Faced with the prospect of returning to the office or still working from home then the idea of early retirement is exciting. The children have flown the nest and grandchildren are imminent. Would a city break in Europe suit me and The […]

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2 comments

Now I’m comfortable in my skin

Now I’m comfortable in my skin

Multiple sclerosis affects everyone differently. My life was busy with work, family and a tiny wee bit of MS until medical retirement arrived. My MS started in 1972 but it was not diagnosed until 1996 with RRMS. MS made no impact on my life even after diagnosis, the relapses were very sporadic and disappeared as […]

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Broken skin: my Functional Electrical Stimulation story

Broken skin: my Functional Electrical Stimulation story

MS affects my left leg and I have been using an FES since late 2014. For the previous 10 years I had used a Musmate a simple mechanical device that is a walking aid for foot-drop. My foot-drop and leg-drop mean that I cannot walk unaided and I walk very slowly. My Functional Electrical Stimulation […]

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The curious incident of the missing disability ramp

The curious incident of the missing disability ramp

I often travel by train on London NorthWestern Railway, I ride The Tike to my local station, flash my disabled person’s travel card, and buy a ticket. The staff check which train I am catching and my destination. When the train arrives at the station a member of the staff puts up disability ramp up […]

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Dog chews the internet cable

Dog chews the internet cable

Stress happens when there is an excess of emotional or mental pressure. Something totally unexpected happens and the body does not know what to do. The flight or fight reaction creates a conflict which leads to stress. Dog chews the internet cable taking my stress levels to a new high. The Lunchbox show Every Thursday […]

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I have a radio show

I have a radio show

I have a radio show with Tring radio every week. We, me and Jessie, present a magazine show, just chat and music. This Thursday 3rd June will be my 10th show live on air. I have always wanted be on the radio but never admitted that to myself. The organisers, Tim and Rachel together with […]

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2021 MS Awareness Week or living with my multiple sclerosis

2021 MS Awareness Week or living with my multiple sclerosis

It’s the annual chance to make people more aware of the problems of living with multiple sclerosis. Yup, its the MS Awareness week. Multiple sclerosis is different for everyone, The handicaps, niggles and disabilities all gang up and form your own personalised version of MS. I have my own unique selection, but hey-ho things could […]

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My positive attitude despite MS disability

My positive attitude despite MS disability

Isn’t it great when a positive event happens, I love it. The wretched pandemic has imposed so many restrictions on everyone’s life, mine has been no exception. It’s not always easy to see when there is an opportunity that is exciting and fun. I always try to have a positive attitude despite MS disability. Gardening […]

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4 comments

The urgent search for hope by Patrick Burke

The urgent search for hope by Patrick Burke

I always enjoy unexpected surprises. One started in early November. I was having my 18-month check-up for the MS-Stat2 drug trial with simvastatin. It’s always a pleasure going down to the MS centre at Queens Square, the staff are really friendly. Also there is an urgent search for hope for people with MS. The end […]

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6 comments

With MS I now move like a tortoise slow but steady

With MS I now move like a tortoise slow but steady

As I move forward through time, ticking off the years, multiple sclerosis has an ever growing impact upon my life. Nowadays I must always have one hand holding onto something firm and stable. The happy days of nipping upstairs or popping next door are history. Now everything must be carefully considered. I now move like […]

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4 comments

I’m a lucky guy Fampridine works for me

I’m a lucky guy Fampridine works for me

I take Fampridine and use an FES or Functional Electrical Stimulator, they both improve my quality of life. I can only walk with a rollator and it is agonisingly slow. Without them I would have to use a wheelchair. OK. my left leg is useless courtesy MS but I do have an excellent right leg. […]

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Table topics competition at Toastmasters floors me

Table topics competition at Toastmasters floors me

I have been a member of Toastmasters since 2012. It was September 2017 and I had entered a national competition. Either give a prepared humorous speech or talk on an unprepared subject. I had reached the second round of the unprepared speech, the table topics competition. Table Topics competition Make an impromptu unrehearsed speech on […]

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4 comments

Now I’m a volunteer with Tring radio

Now I’m a volunteer with Tring radio

I have decided to volunteer with Tring Radio. Starting off with a little role.  I had a sneaky feeling that when I completed my sponsored #Walk4onehour in September I was going to feel lost. A new challenge was required and I was right. The sponsored walk had been a wonderful success. It had concentrated my […]

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6 comments

Managing MS fatigue, an overwhelming inability to continue

Managing MS fatigue, an overwhelming inability to continue

Managing MS fatigue is a long story. As recently as 1995 I played badminton singles in the local sports centre, after just half an hour I was physically exhausted and very sweaty. I’ve now hung up my badminton racket, personally I blame multiple sclerosis,. I still suffer intense exhaustion but no sweating. Walking very slowly […]

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6 comments

Now I have twitchy legs at night

Now I have twitchy legs at night

There are hidden joys of multiple sclerosis. Its one long story of new challenges and survival. My latest problem, twitchy legs, only surfaced recently. It’s an uncontrollable twitch, starting in a muscle but culminating with my leg definitely twitching and repeats itself again and again. For some reason the fun only starts after the sun […]

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2 comments

Blogger’s block or possibly bored with lock down

Blogger’s block or possibly bored with lock down

20-June 2020 It’s been over 3 months since we were all catapulted onto a different planet. My day-to-day existence rules change every day. You as well? Subtle changes every day. Surely me, a person disabled by multiple sclerosis, should have no problem finding topics to write on and post them on my website. Nope its […]

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My exercise routine at home that ticks a lot of boxes

My exercise routine at home that ticks a lot of boxes

7 June 2020 I am proud of myself. Bit of an arrogant statement but what the hell. Every day always starts with a quick burst of aerobic activity. Enough to get my heart beating faster. Remember I’m badly disabled by multiple sclerosis, I cannot walk unaided. Is this exercise routine at home good for me? […]

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Busy doing nothing, I want some variation

Busy doing nothing, I want some variation

5 May 2020. So here we are, over six weeks into the lock down. Forty-two times one day has morphed into the next. The only variation is the weather. I am busy doing nothing. I  have a garden, I can see trees and everyone is friendly so I am lucky. Sadly I am not keeping myself […]

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6 comments

Enjoying our garden during the lock-down

Enjoying our garden during the lock-down

24 April 2020 Well, isn’t the weather glorious, but it looks like some rain is due any day. I’m enjoying our garden during the lock-down. In this time of chaos l am able to quietly watch it evolve. More by good luck than design there is always at least one plant flowering in the garden […]

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4 comments

I must ensure exercises become a routine activity

I must ensure exercises become a routine activity

18 April 2020. The coronavirus lock down started at the end of March. Our lives were then thrown into chaos. Everyone had to find a new routine, a new rhythm and this includes me. I made a simple promise to myself. I need to take more exercise and I must ensure the exercises become a […]

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Suffering from consequences of panic buying

Suffering from consequences of panic buying

20-March 2020. People are buying huge amounts of essential food and clearing supermarket shelves on a daily basis. I get out of bed at about 8.00. It takes me nearly an hour just to get dressed. Factor in breakfast and 90 minutes of the day is gone. At this stage of the morning some supermarkets […]

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Further handicaps because of MS

Further handicaps because of MS

I have a problem with expecting too much from myself. This in turn hurts me more than it helps me. I am always looking at my life and trying to simplify everything I do but it is harder than it seems. The biggest problem with advanced MS is how an ordinary activity is suddenly fraught […]

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4 comments

Chemistry in the kitchen

Chemistry in the kitchen

Cooking food is simple and easy for me plus everyone enjoys food cooked by somebody else. I have also rediscovered baking, just four or five basic ingredients and you create a cake. Incidentally I love raw cake mixture, but the cooked product is sooo much better. It was after a recent cake disaster that I […]

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4 comments

Disabled and can’t walk unaided, welcome to my world

Disabled and can’t walk unaided, welcome to my world

The pernicious creature multiple sclerosis affects me more and more as time goes by. I do have two legs but one of them is virtually useless. My brain cannot send messages to all the muscles in my left leg. Also, my left leg does not tell my brain everything that it has done. Messages cannot […]

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4 comments

Discounted theatre tickets for disabled people

Discounted theatre tickets for disabled people

Almost every British theatre offers discounted tickets for disabled people. Basically the carer gets in for free. I have seen excellent productions as well as extremely good actors via this scheme. This opportunity of discounted tickets for disabled people is available all  over the UK. If you can show that you are disabled then your […]

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My last ten years with multiple sclerosis

My last ten years with multiple sclerosis

In the last last ten years I have changed from a man in full-time employment to a man with very visible, full-on, multiple sclerosis. Until 2011 my multiple sclerosis was affecting me physically but my thinking and problem-solving skills were still good. Employment was always somewhere in Europe as a contract computer analyst programmer or […]

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3 comments

Another way to dry my phone

Another way to dry my phone

I dropped my mobile phone down the loo, accidentally of course 🙂 . To be more precise it fell out of my back jeans pocket and sank beneath the surface; a trail of bubbles gave its position away. I fished it out, gave it a quick dry with a towel and then put it into […]

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Multiple sclerosis and the double whammy

Multiple sclerosis and the double whammy

Multiple sclerosis has taken over my life very very slowly. That sounds so much better than ruining my life very very slowly. It all started in 1972 and remained in the shadows for thirty years. The disease is now grown up, it’s matured into SPMS. For every disability there is a consequence. I call this […]

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4 comments

I am disabled but am I green enough?

I am disabled but am I green enough?

I suffer from advanced multiple sclerosis so I am disabled.  I am disabled but am I green enough? Can I balance my disability with being an ecological friendly person? Sometimes I can and I do make planet-friendly choices but there are many other areas that are a total car-crash. In the latter case I have […]

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4 comments

Hidden disabilities of my MS

Hidden disabilities of my MS

My MS diagnosis was 25 years ago. Little relapses were always followed by a remission. I was working and leading a perfectly normal life or so it seemed to an outsider. In 2000 my remissions stopped. The anxiety, bladder and walking problems of MS became permanent and they also slowly got worse and worse. An […]

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8 comments

Firing on all four cylinders

Firing on all four cylinders

I am now recovering from a particularly nasty bout of man-flu. I was in bed for two a half days with a sneeze rate of anything up to 10 per hour. Add to this a temperature and I felt super grotty. I was not firing on all four cylinders Going out into the fresh air […]

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I can now see light at the end of the tunnel

I can now see light at the end of the tunnel

Someone told me my last couple of blogs were not optimistic, Guilty as charged. In my defence I say that advanced multiple sclerosis is a gritty disabling disease. It is always there, in your face and in your head. There is no escape from it. The good news is that in my head I can […]

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10 comments

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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6 comments

More experience of sitting down gardening

More experience of sitting down gardening

Standing up gardening has one big drawback for me. I will fall over and I do. Digging a hole with a spade is not an option. In fact The Wife has banned me from that activity but secretly I’m quite relieved. Instead I do sitting down gardening, it is what it says on the tin. […]

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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. Now I do feel isolated by my […]

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12 comments