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
Leg drop and foot drop, different MS disabilities
Leg drop is an MS disability that makes my life awfully difficult. Do not confuse it with foot drop. These are two very different MS disabilities and I suffer from both. Foot drop and leg drop are inevitably mentioned in the same sentence as if they are the same problem and can be resolved the […]
Leg drop glues my foot to the floor
Leg drop glues my foot to the floor. You might think I am joking but I cannot lift my left leg off the ground without help. Its just like foot drop but it affects my thigh instead of my foot and the effect is just the same. Its difficult to imagine the problems until they […]
I’m a frequent faller, its a fact of life
I’m a frequent faller, its all because I have multiple sclerosis. My left leg is the culprit, I have drop foot and drop leg. It must have started sometime in the 1990’s, my diagnosis was in 1996. What started as an occasional trivial event now has a major impact on my life. At first the […]
Paristeen is another morning routine
Peristeen is another morning routine. This was not a random decision, Peristeen is vital for bowel management and it is now an essential part of my life. I do have a good healthy relationship with my MS but living with it can be tricky and life never stays still. If you have never heard of […]
Advanced MS and sitting down exercises
Advanced MS and exercise are not natural bedfellows. None the less exercise can help us all to manage common MS symptoms such as fatigue, muscle spasms or balance. When I was a child my parents were always saying to me, “Go out side and take some exercise” and it was so easy. Those were happy […]
Poor balance and mobility makes walking difficult
I have poor balance and mobility so I use a mobility scooter. I remember in 2012 when medical retirement arrived I could easily lift my mobility scooter onto a train and I did not need a walking stick either. Those were carefree days, now long gone. Nobody told me how my life would change in […]
Do we really need a car in London?
Do we really need a car now we are living in London? Our car is a 14 year old 2 litre diesel VW Passat estate, far too big for us in London. Its not ULEZ compliant (Ultra Low Emission Zone), much too old. Its starting to cost more every time it has an MOT. Also […]
A short visit to Woburn Centre Parcs
I last visited Centre Parcs when all 3 of our children were under 10, over thirty years ago. My diagnosis of multiple sclerosis was at least 10 years into the future. Now our two daughters are married, and each has a baby son and I am living with advanced multiple sclerosis. A visit to Centre […]
3 traumatic injuries to me
Visits to hospital Multiple Sclerosis was the the one factor that joins these 3 traumatic injuries together. None of them could be described as fun but hey, I survived. Sepsis December 2013 I have used intermittent self-catheterisation to empty my bladder since 2005. this visit to hospital occurred in 2013. I had just received a […]
My life with MS and invisible disabilities
My life with MS is turning into a balancing act. Not the high-wire type of balance, just making sure I don’t do two things simultaneously. My life is now just one job at a time, no more walking and talking. Invisible disabilities rule plus they control my life. Nobody knows I have invisible disabilities unless […]
Time to move into a more suitable property
Me and MrsB decided its time to move into a more suitable property. Multiple sclerosis and age have finally caught up with me. Our Victorian five bedroomed terraced house is beautiful, but not at all practical. The local council built a wet room a few years ago. It made washing and going to the loo […]
My own cannabis experiment
I’ve had MS since 1972 and it has had a huge impact on life. It now affects me in every which way. The wonderful NHS prescribes drugs that will ease my symptoms so every day I have to take a cocktail of pills. Time to look at other solutions. I decided to do my own cannabis experiment. […]
I forget what I was going to tell you
I’ve had too many ideas on blogs to write over the last few months. Some frustrations, some positive experiences and even some actual thoughts. But when I start to write a blog there is a crisis that needs my full attention then I forget what I was going to tell you. I’m ten Recently this […]
What has happened to my energy?
What has happened to my energy? Back in the day, I had so much get up and go. I had a 9 – 5 job, 3 young children, a garden to look after and numerous other responsibilities. From about 2005 the wheels began to come off the car. I gradually had less energy to fit […]
A UTI with advanced multiple sclerosis is no fun
It crept up on me very slowly, just think of a lion stalking its prey. Initially, I was blissfully unaware that I had an infection. Looking back with the benefit of hindsight I can see how I slowly deteriorated followed by a slow recovery. A urinary tract infection or UTI with advanced multiple sclerosis is […]
My interview on Tring Today – Friday 18 February
Bored on Friday 18th at lunch time? Why not tune into Tring radio on Friday between 12 and 1 and listen to my interview as a guest on Tring Today. Tring Radio is a local community radio station run entirely by volunteers. Two people started the station two years ago at the start of the […]
Shopping in a wheelchair is a challenge
If you find walking easy then I am going to issue a challenge, go shopping in a wheelchair. Before you leave don’t forget to tie your legs together. You must go out on your own and don’t forget a shopping list or shopping bag. You will need some cash, credit cards and your mobile phone. […]
Understand MS fatigue, logic can fly out of the window
For many people fatigue is an unenviable part of multiple sclerosis, its severity varies from person to person. People do not truly understand MS fatigue unless they suffer from it. The cause of this hidden disability is not properly understood. Worse still, too many people do not appreciate that fatigue is a chronic hidden disability. […]
Something vaguely interesting, dining across the divide
Its July, the middle of a dreadful summer and I’ve got nothing to do so I‘m surfing the internet. I find something vaguely interesting, The Guardian are offering a chance to have a discussion with someone who holds opposing views. A free meal is thrown in. I answer the questions on my views, submit my […]
I attempt a stupid walking challenge, only 100 Km
Earlier this year I tried a stupid walking challenge, only a mere 100 Km over 10 months. I have used an FES for over six years, it helps my walking. A year ago I completed a one hour walk. At the end I was exhausted but it was deeply satisfying especially as I raised over […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
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 […]
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 […]
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? […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 in 1996. Little relapses were always followed by a lengthy 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 […]
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 […]
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. […]
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 […]
Medical retirement 75 months ago
I took medical retirement in January 2012. That makes it sound like a voluntary decision so let me reword that. Medical retirement grabbed me 75 months ago in January 2012. For me there was no option. 🙁 A permanent holiday It sounds absolutely idyllic. I did not realise what an earth shattering process this was […]
Invisible disabilities are the hardest
Multiple sclerosis comes in all sorts of packages. There is no ‘one size fits all’. When I read the newspaper I look very healthy. As soon as I stand up everyone can see I’m seriously disabled. This is the flip side of MS, the invisible disabilities are the hardest to understand. Few would realise the […]
Is physical exercise good for me
I believe that exercise is good for me and essential to having a good quality of life even despIte suffering from aDVANCED ms MS. It is an excellent activity to re-connect the mind and body before or after a long day of stress. My MS stops aerobic exercise, getting all hot and sweaty. Even just […]
Multiple sclerosis is a vile disease
MS smothers you, wraps you up in its tentacles and replaces energy with fatigue. I can no longer do things that other people take completely for granted. Even worse there is nothing predictable about it except it just gets worse and worse and worse. It can even lurk in the body for years before its […]
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 […]
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 […]
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 […]
Simple things I now need to understand
A few years ago I kidded myself that I could still do the things just like I did in the noughties. Simple things I now need to understand. “Don’t worry, I can do it” I shouted enthusiastically as I was starting jobs like cooking supper. It would all begin swimmingly. Suddenly, out of the blue, […]
Detected definite changes since last year
It is extraordinary how one year rolls into the next at an ever increasing speed. At a quick glance I am exactly the same as 12 months ago. I’ve still got MS, who saw that one coming! I still ride The Trike and I’m still just as busy. Now scratch beneath the surface. I have […]
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. […]
Doing Pilates sitting down
Pilates is a stretching and exercise program focusing on core muscles. These are the ones in your stomach. Keeping these muscles healthy does help my balance and walking. To put it bluntly this means I don’t need to use a wheelchair just yet. It’s only too easy to say “Oh I need to take some […]
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 MrsB went to Australia. I am physically disabled but I still travel. Cut the stress I have just […]
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 […]
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 […]
I have discovered sitting-down gardening
Another change because of MS. Time to discover a different way to garden. Now 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 found me, who knows? Childhood My father introduced me to gardening when […]
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 […]
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 […]
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 […]
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. “This is an idea. Walking round the supermarket […]
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 […]
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 […]
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 […]
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 […]
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 […]
Every morning I have to stretch my stiff muscles
Imagine getting straight out of bed and immediately walking into the bathroom, Haha those were the days and I can still remember them; must have stopped about 2012. Nowadays I have to start my day differently, I must stretch my stiff muscles. Multiple sclerosis is the culprit. What did I do in my sleep? Last […]
Can I walk at least six kilometres
On 24th September 2017 the MS Society is organising a sponsored walk called ‘Together we walk’. On their website they state ‘This September hundreds of MS Superstars, our friends and families, will join forces in London to take in the sights and raise funds to stop MS. Will you join us?’ Can I walk at […]
Think about the positives
Too many people with progressive MS suffer in the heat, I know I do. I’m not naturally lazy quite simply I am clobbered by the heat. The energy just drains out of my body and worse if its humid as well. Two hot days and already I’m apprehensive of the summer. I must remember to […]
Stumble fall crunch and wallop
Monday evening We had finished watching episode 5 of Line of Duty. No spoilers I promise. Program finished and we were done. All that was left was to clear up the room and toddle off to bed. The Wife had taken the glasses through to the kitchen. All I had to do was switch off […]
Another milestone in the inevitable progression of my MS
Something has definitely changed in the last few weeks. It was not an ‘Oh my God’ moment as in a flash of inspiration. Instead it was an ‘Oh my God’ realisation and it took a few weeks for me to understand. Let’s call it another milestone in the inevitable progression of my MS. Life moves […]
Sometimes I want a bit of stress
We can all recall moments when stress has got the better of us. Moments of bad stress might include road rage, trolley rage, package rage and even computer rage. All caused by heightened anger or frustration. Sometimes I want a bit of stress. Sometimes I want a bit of stress Stress like this lasts for […]
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 […]
Every morning its four sticky FES electrodes
Every morning its four sticky FES electrodes. I must put them on my left leg. Two go onto my thigh and two go just below the knee. I started using the FES two years ago in December 2014. I estimate that I have taken the sticky electrodes off about 720 times and put them back […]
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 […]
WorldvsMS challenge and The Amsterdam HACK
The WordvsMS campaign is an initiative that had been setup to give a voice to people with Multiple Sclerosis. The campaign has asked people with MS to list their challenges in everyday life. Three challenges were accepted from 103 that were submitted A weekend in mid-November was selected when groups of people were invited to […]
Going back to Pilates
I have missed my last four Pilates’ sessions. They are on a Friday morning but I have been away. Going back to Pilates was a bit like going back to school after the Easter or Christmas break. Going back to Pilates Don’t get me wrong I enjoy Pilates. It helps me with the biggest problems […]
Its when the unexpected happens
Its when the unexpected accident happens. Inevitably I get stressed and this feeling lasts for a couple of hours. When I am feeling fragile it does not take much to tip me over the edge. Most of the time I’m as tough as old boots. Its when the unexpected happens The problem is the MS. My memory and sense […]
MS Society MSLIFE2016 Exhibition
Over the weekend 17/18 September the MS Society held its biennial exhibition, The MS Society MSLIFE2016 Exhibition MS Society MSLIFE2016 Exhibition I went there on the first day and arrived at about 12.30. There was expectation and excitement from the moment I walked into the exhibition as well as a noisy atmosphere. During the day I […]
Do my morning exercises
As little as ten years ago I would wake up and get out of bed without a thought. Such bliss, such joy. Now when I wake up I always feel horribly stiff. It’s a huge effort to turn over onto my back so I can swing my legs out of bed and sit on the […]
Sticky electrodes and my FES
I started using a Functional Electrical Stimulation (FES) in January 2014. It has been my game changer. Without the sticky electrodes and my FES I would probably have to use a wheelchair around the house. Hold on a moment, I would definitely have to use a wheelchair. Instead I have a different life. Sticky electrodes and my […]
