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
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 […]
An invisible physical disability
Are you like me? I suffer from an invisible physical disability. Do these statements sound familiar? “Crikey I didn’t know you were disabled”. Or maybe someone said “You don’t look disabled”. Sometimes it’s even “You look healthy”, and then they deserve a slap. An invisible physical disability Millions of us in Briton have a hidden disability. […]
Some things I simply do not see
Vision is a bit of a mystery to me at times. Some things I can see perfectly well and some things I simply do not see. I know my vision is not 20/20 🙁 I always have to wear a pair of glasses, I even have special reading glasses. Some things I simply do not […]
The FES has been a life changer
An FES was originally fitted over 18 months ago to help my footdrop. There is no doubt the FES has been a life changer. It makes me feel more confident, I have better balance and a definite ‘I-can-do’ feeling. OK so I still need to use a rollator. The FES has been a life changer At […]
I cannot do things I once took for granted
Everyone knows Multiple sclerosis is a horrible disease. Now I cannot do things I once took for granted, its the Multiple Sclerosis. Its taken a long time but I thinks it has finally got me. I get so frustrated. I cannot do things I once took for granted Am I wrong? I don’t think so. […]
Visit The Shoulder Consultant Again
I had an operation to repair the rotator cuff in my left shoulder in August 2014. There is still an occasional twinge in my left shoulder. Shortly after the operation, the consultant said he could do a hip replacement in less time than it took to repair my shoulder. Only then did I realise it […]
The FES Really Changed My Life
The FES really changed my life. I am quite sure it was the Functional Electrical Stimulator otherwise known as an FES. Originally fitted in December 2014. I immediately stopped falling over with monotonous regularity. Instead I stayed upright, it changed my life for the better . So many people commented that I looked better and […]
Heads MS Wins or Tails I Lose
Heads MS wins or tails I lose. Its all on the toss of a coin? Life is unfair. Running, driving, dog walking, employment are just a few things my friend MS has won from me. It is exerting such a strong grip on my life. Nowadays I run out of energy more quickly than ever 🙁 […]
The Highwayman in Berkhamsted
The Highwayman in Berkhamsted used to be a Blanc Brasserie restaurant, it catered for people who use a wheelchair admirably. There was a good disabled loo at pavement level. The dining area is over half a dozen steps lower than the entrance but there was a lift for wheelchair users to get to the dining […]
Life without a FES would be unthinkable
I have SPMS and seriously disabled with foot drop. I was fitted with a Functional Electrical Stimulator (FES) in December 2014. A consultant from Queens Square, London suggested that it would help my walking. At first I found it very fiddly to setup and this did not inspire me with confidence. Within a few days […]
