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 Patrick and I have advanced multiple sclerosis
I am Patrick and I have advanced multiple sclerosis; A physically active life is no longer possible, balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple sclerosis (MS). The beginning I am convinced my multiple sclerosis started in 1972, my […]
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 […]
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? […]
Our garden creates positive moments for us
28 May 2020. Every cloud has a silver lining. Our garden creates positive moments for us. Since early March there has been an enormous cloud hanging over this country. This cloud forced our little niche business to close. The Wife is responsible for looking after up to half a dozen dogs each day while the […]
I enjoy a spontaneous event during the lock down
23 May 2019 I enjoy a spontaneous event. Something completely unplanned and it must make me feel happy During the lock down caused by Covid19 pandemic so many of these little life-events have stopped. I really was pleased to see the back of a few but there so many that I really miss. I enjoy […]
Now it is the boredom since lock down started
11/05/2020 Its now over 7 weeks since the Covid19 lock down started, boredom is definitely hovering on the perimeters of my life. Retaining focus and motivation are getting harder. Over the years me and MrsB have developed a good coping strategy and mutual understanding but these are unusual times. We are both stressed and frustrated […]
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 […]
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 […]
Adapt my MS normal to Covid 19 isolation normal
9 April 2020. Right now the chips are down. I need to find a new life that includes Covid 19 isolation. I must not allow depression or anxiety to intrude or overwhelm life. We all need to come up with a new strategy or routine. I must change my MS normal to Covid 19 isolation. […]
An MS crisis with my dysfunctional bladder
29 March 2020. This MS crisis started when I was on holiday in Valencia in February 2019. I woke up one morning wanting a pee but I was unable to insert a catheter into my bladder. The unflappable hotel staff directed me and The Wife to hospital where I was diagnosed with a UTI and […]
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 […]
Joseph Joseph Chop2pot Folding Chopping Board
Someone gave me a Chop2Pot folding chopping board as a present. I use it whenever I am preparing food to cook. The biggest advantage for me is I use it to transfer food from a large and heavy wooden chopping board to the cooking pot. I am clumsy and moving hot pots and pans between […]
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 […]
Ideal solution to an FES problem
I must carry my Functional Electrical Stimulator (FES) and it is quite bulky. Yup, I suffer from multiple sclerosis and like so many others I have foot drop. I use a dual channel FES to help me with walking. My problem, how do I carry my FES so it is safe, secure and easy to […]
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 […]
HANDYSCOOT™ Lightweight travel mobility scooter
Have you ever thought of buying a HandyScoot™ lightweight travel mobility scooter? Perhaps you are recovering from a medical procedure or maybe you just need help getting around because your walking is not so good these days. Not all mobility scooters are the same. The purchase of any lightweight travel mobility scooter is a significant […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Our 40th wedding anniversary
40 years and still happily married even though multiple sclerosis is the fly in the ointment. The Wife decided we would go away to celebrate the occasion. Somewhere relaxing, not too demanding but a bit of a blast. We decided on a week long holiday for our 40th wedding anniversary. She really wanted to go […]
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. […]
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 […]
Luton Central railway station
Luton is a large town in Bedfordshire with a population of over 210,000. Luton Central railway station is busy with five platforms and about 12 trains an hour stopping there. Lots of London commuters use Luton Central railway station. Just recently I visited the Luton campus of Bedfordshire University to give a talk to 2nd […]
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. […]
Have you tried using a Knork?
I have slowly been losing sensation in the fingers of my left hand since late 2017. Now I am hardly able to twirl spaghetti round a fork. My writing has deteriorated as fine control has ebbed away, it’s now a childish scrawl. I struggle to unscrew the lids off jars and bottles. This isn’t right […]
I’m talking about Uhthoff’s syndrome
The mercury in the thermometer will creep up over the summer. Some days it creeps higher than other days. Whilst it remains below 20 I am more than happy, 21 or 22 and I need to be careful. If it gets over 23 then I can only venture out occasionally. I’m talking about Uhthoff’s syndrome. […]
Methods I use to manage my multiple sclerosis
Multiple sclerosis is a very unpredictable disease and tough to live with. I think we all know that; I certainly do. MS has now been a part of my life since 1972 but I was not diagnosed until 1995. Here some methods I use to manage my advanced multiple sclerosis. Everyone has their own way […]
Some of my MS disabilities are invisible
Multiple sclerosis rules my life. Even when I think I am on the home run it will stick out a tentacle and trip me up. You too as well I guess. I have obvious disabilities such as walking, in fact I cannot walk unaided. Some of my MS disabilities are invisible. People will not know […]
Physically disabled in Athens a survival guide
I am on the Patient Advisory Board for the RADAR-CNS project. This is an exciting and ground-breaking project and rather than me explaining it, I suggest you go to their website which is HERE. This year their annual conference was in Athens and I was there for four days in mid May. If you are […]
