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
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 […]
Swimming is proper exercise
At hydrotherapy I had unexpectedly found myself swimming doggy paddle. Suddenly I realise swimming is proper exercise. There is no fear of falling over. It uses so many muscles. It is healthy exercise and no fear of falling over, call it a water workout. Feeling exhilarated by the thought of swimming a few strokes I […]
Repairing my rotator cuff
Repairing my rotator cuff was my operation in August 2014. Its now December 2015, that was more than 15 months ago. My shoulder now has a full range of movement but no strength when lifting my arm up to the horizontal position. I assumed this would to be my misfortune for the rest of my […]
A Short Video – Me and My SPMS
Below is a short video of me taken recently after a networking meeting. To watch the video click on the picture I know full well that after a diagnosis of MS you may well feel shell shocked, devastated, depressed or even as if the world around you has collapsed. Despite the diagnosis MS […]
At Night I Can’t Just Fall Into Bed
It’s the evening, I’m tired and its bedtime but at night I can’t just fall into bed. I have to go through a ritual every evening before I can get into bed and start reading my book. Getting undressed and removing my FES is quite a palaver. If I do this standing up I’m guaranteed to […]
Drop Foot And The FES
It’s now August 2015, time to think about my drop foot and the FES ; I have been using a Functional Electrical Stimulation (FES) to help me walk since December 2014 that is 9 months. It is a dual channel FES. I cannot lift the toes or front of my left foot off the ground. I cannot […]
Good Days and Bad Days
Its only started over the last few days. It’s a return to the old times of good days and bad days. What’s happened? I am still just as busy. I am still doing things that I enjoy. Some of the things I do even earn me a bit if money. One small thing has changed […]
A Very Wet Phone and 5 Rules to Dry it
Does your mobile phone float? Mine fell into the loo. I had a very wet phone. A very wet phone and 5 rules to dry it. Let’s start at the beginning I’m a bloke and I keep my phone in the breast pocket of my shirt. If I bend over at the waist I will fall […]
Its taken a long time to get going again
It’s took me a long time, a whole week to get going again after a short holiday. Here’s why. First excuse is Portugal Barby and I went to stay with University friends of mine. They have a house in the mountains near Monchique, Portugal behind the Algarve coast. Here are some of the memories: Freshly […]
Feeling Frustrated, Lost my Temper
MS is a personal disease, different for everyone. No matter how much you try to explain only an MSer can truly appreciate it. There are subtle changes to the mental state of mind. Claustrophobia, clumsiness, feeling frustrated and even stupidity can occur. The physical situation will invariably deteriorate during the day. Sometimes it all gets […]
Two channel FES
I was fitted with a single channel Functional Electrical Stimulator (FES) in mid December. Sixteen weeks later, at the end of March I was upgraded to a Two Channel FES. The original FES is only able to stimulate one muscle; the new one can stimulate two muscles. The original FES stimulates the muscle to lift the front of the foot. […]
Berkhamsted station is step-free
At long last the lifts at Berkhamsted station are working. It is a step free station.. The lifts were opened to the public on Friday 13 March. It has been an awfully long wait. They started the building work in early 2014 and it was finished by January 2015. People had been seen going up and […]
The inevitable progress
Doing simple things thing seems to leave me feeling exhausted and no physical energy. Hole in my energy tank Why do I leak energy so easily? Any little job leaves me wanting to sit down Not only is it so tiring doing anything remotely active and now it takes me so much longer. I hear […]
The positives from MS
I was going to give this article the title of “What has MS stopped me doing?”. I don’t like that because it is so negative and basically I am a glass half full man so lets make this a positive post. Positive things What good things have happened to me over the last few years? […]
An unwanted visitor
It all started at the back of my throat. It was just a tiny tickle at lunchtime. I honestly thought it was my imagination. It had gone away by the evening, hurray. Next morning, day two, it was a bit tricky to swallow but a couple of cups of tea sorted that one out. I […]
A terrible shock
Last week I discovered that our lovely shower was not working and the problem wasn’t just the shower. Book the engineer The story starts when the thermostat for our power shower broke so the shower water was only freezing cold. I phoned Aqualisa to book an engineer. I pulled the disability card and was told […]
Inactivity kills more than obesity
Be active, it really is good for you even if you are grossly overweight. Obesity Not taking enough exercise is more likely to kill you than obesity BUT obesity in children is linked with an increased risk of MS and other autoimmune diseases such as Crohn’s Disease. Inactivity Believe it or not you do not need to […]
FES, 4 weeks later
I was fitted with a Functional Electric Stimulator (FES) in December 2014. No expectations FES has changed my life but not in ways that I was expecting. Actually I did not really have any expectations. I had not done any research into it; at times I’m so idle. I was only getting one fitted because […]
Quality of Life
Call it the general well-being of an individual. Quality of life is a barometer of the mind How much do you enjoy each day? Do you have a reason to get up in the mornings? Do you look forward to tomorrow or do you wonder how you are going to get through these moments? My […]
Walking is 28% Faster with an FES
This is a big question. Can I walk faster with an FES or Functional Electrical Stimulator? How can an FES help me to walk faster? Will it help me? In my previous post about FES I explained how this gadget should help me with my walking. My second visit to the National Hospital for Neurology […]
FES (Functional Electrical Stimulation)
I have foot drop and it has got progressively worse over the last 10 years. FES my new walking aid Foot drop is a paralysis or muscular weakness that makes it very difficult to lift the front part of your foot and toes. It can also be called drop foot. It can cause you to drag your […]
Shoulder surgery
I have made several references to my shoulder operation but not explained it to you in detail. The operation was to mend the rotator cuff I needed to stabilize my shoulder after I dislocated it at the end of February 2014. I did a sort of Dellboy imitation and crashed into a radiator not that […]
Sometimes I Feel So Fragile
Occasionally I do feel frail or delicate. Most of the time I’m as tough as old boots. Emotional stability When I feel fragile it does not take much to tip me over the edge. I can suddenly change from a robust healthy specimen to someone who is crying; yes I do cry and want a […]
Visiting Wales
I am visiting Wales, Penarth to be precise. Meanwhile Barby is on a walking break, 5 days of respite. She is on her annual pilgrimage to the Lake District so more Wainwrights can be crossed off the list, notably Skiddaw. Home alone? With one arm in a sling it is impossible for me to put on […]
Exciting news
I got up at 6.45 in the morning on Thursday 7th August. I had to go up to London, another infusion for the ASCEND trial; week 100. Almost eight hours later I walked back into the house. Autopilot The first thing, even before a cup of tea I always check my emails and there was […]
My MS Fatigue, What Is It Like?
Fatigue is a common symptom of advanced multiple sclerosis. It does vary tremendously from person to person. Multiple sclerosis is not understood by far too many people. Find out more about my MS fatigue. How does my MS fatigue affect me? My MS fatigue, what is it like? An overwhelming inability to continue but there […]
Falls, what can I do?
Falls are a surprisingly common event for people suffering from a progressive illness. I have extremely bad balance foot drop in my left leg. The question is quite simple, ‘What can I do to reduce the chances of having a fall?’ I’m constantly improving my strategy in an attempt to stay on my feet and […]
My left shoulder
Those of you in the know will be familiar with the accidents and injuries that I have done to my left shoulder. It has taken the brunt of a couple of falls as well as the odd stumble. The first dislocation happened in January 2013 and then another visit to hospital in February this year […]
MS Life 2014
This was a weekend where an MS sufferer was able to mix with and see other MS Sufferers courtesy of the Multiple Sclerosis society UK. MS Life 2014 was a golden opportunity to find out so much. Latest research, symptom management, get expert advice and tips on living with MS were subjects you could explore. […]
Benefits of Vitamin D
Vitamin D and sunlight lead to so many benefits, it is the sunshine vitamin. Time in the sun makes you feel better but there are some MS sufferers who avoid the sun because an increase in body temperature is not a good idea. Get the benefits of Vitamin D by taking the capsules. Vitamin D […]
Railway stations, access for disabled travellers
A friend alerted me to this article from the Independent. It describes how funding to improve access for disabled passengers at railway stations is being slashed. The United Kingdom considers itself to be a civilised country but so many train stations are not disabled friendly, they are inaccessible? I won’t paraphrase the article. Instead I […]
Its the little things
Do people really know what it is like to have a progressive physical disability? What took a couple of seconds now takes me a couple of minutes or more. People see me around town I’m always cheerful and positive when people see me in town or at networking meetings. It’s what goes on behind the […]
A sense of balance
Many MSers who have SPMS do not have very good sense of balance. Now imagine this, you are momentarily distracted, you lose your sense of balance and fall over. As you fall over you put out a hand to protect yourself and you dislocate a shoulder. I’m guilty as charged. Do you see what I […]
Multiple Sclerosis Word Cloud
The plan I want to build a word cloud or a picture of words that is associated with multiple sclerosis. This is a way to visualize text. A word cloud picture shows the frequency of word usage and the more frequently a word is used so the size of the word in the word cloud […]
Falling Over Again, 25th February
It’s something we, I mean those who have balance issues, are always frightened of; falling over and then a visit to hospital to repair the injury. Well I did it again. How did I do it this time? You must have seen the famous Only Fools and Horses episode where Delboy leans against a bar […]
Yes I Agree, Exercise is Good For MS Sufferers
Lots of learned people are now saying that exercise is good for MS sufferers and yes I agree. I have always thought that exercise is good for you. On what basis can I back up this obvious statement for MS sufferers? A bit of background Our Golden Retriever, Tonks, did something to one her knees […]
Chilterns MS Centre
Chilterns MS Centre moved into a new building in 2013. It used to be in a small prefab concrete single story building. Money was raised to build a much larger new two storey Chilterns MS Centre. The annual cost of running the new building has exceeded expectations. Turn it into a viable business Robert Breakwell, […]
City University and my Travelscoot
I had been asked to give a talk at London City University on Tuesday 4th Feb at 1 pm. I was talking to 2nd year nursing students. The theme of my talk ‘Experiences of living with a long term medical condition’ in my case multiple sclerosis. The train braked I caught the train up to […]
The glass is half full
I don’t read many blogs, maybe I should. A couple of months ago I wrote an article for the blog Stumbling in Flats, its one of the only ones I regularly read. I took a decision and decided to write something for it and it has just been published, the title is I think the […]
Sunny day in Winter
As usually happens in January there have been endless days when the sky has a uniform greyness. Blue sky and sunshine are a rare sight; sometimes the sky is clear at sunrise but within an hour or so grey cloud is present from horizon to horizon. Dreary weather goes on and on If you are […]
MuSmate a walking aid for foot drop
I have foot drop in my left leg. When the problem started to be an issue I used the MuSmate a walking aid for foot drop. It stops me dragging my toes along the ground and tripping me up. Without the mechanical elastic device called a Musmate I could fall over very easily when walking. The […]
Do these help?
Being an MS sufferer is no joke, I should know. If you have MS there are so many items out there that can make your life easier. People seem to be so unaware of what is available. Here are some of my helpful tips to reduce the levels of stress in day-to-day life. Do these […]
My orthosis, 10 weeks later
The first fitting for my ankle-foot orthosis was in late September 2014, here is the post. Now its mid December. As we all know receiving something is one thing but only too often further work is necessary. This proved to be no exception. I was so pleased when I first started using it, walking was so […]
Feels like I’ve been mugged
Have you ever felt like you have lost a day? It feels like jet-lag, losing contact with time. No I was not hit over the head, nor have I flown to Hong Kong. Much more boring than that, I have had another taste of Uhthoff’s phenomenon. I’ve talked about it in the past but I’m […]
Another Rant, this time Arriva buses
On Tuesday 1st October I had to catch a bus from Aylesbury to Berkhamsted. Arriva buses operate this service, the 500 bus. As I was about to get on the 17.25 bus the driver said that he would not allow me on because there was no space for my mobility scooter. I was told to […]
My New Orthosis
I recently visited Amersham hospital and had a new orthosis fitted, it stops foot drop. Strictly speaking its called an orthotic. By preventing foot drop my knee hyperextension will also stop. That is the theory. and even more interesting, the theory works. Better balance Yes, it makes walking easier and I am sure it does […]
Hemel Hempstead Water Gardens & Ashridge Estate
I am a part of a group of people with disabilities, this includes deafness, blindness and mobility issues. We make occasional trips to places of interest and assess them for accessibility. We visit locations in and around Hemel Hempstead. This time it was a visit to the Water Gardens at Hemel Hempstead and Ashridge Estate. […]
Update on my Foot Drop
Sixteen months ago I wrote about the Musmate, it helps me to walk so much further because it lifts my foot off the ground. I still have MS and inevitably my walking ability has deteriorated albeit very slowly. At least the problem remains in my left leg, my right leg is still very reliable, phew! […]
Stuck in the middle – a press release
This press release tells the story of a disabled person (me) going to an MS Society meeting at Hatfield house but the station is not step free. Their handouts gave directions from the railway station. This scenario is difficult to believe in the 21st century. MS sufferer stuck on train platform when trying to attend […]
She’s gone
My ability to get up and go, where has it gone? That’s something I used to take for granted. There is something I used tol take for granted – it is something called balance. The loss of it has a profound affect on everything I do. Do you know that walking is 80% balance? So […]
Buy a stick, lose a stick and find a stick
I’m hopeless, I admit it. I scatter my possessions here, there and everywhere. I don’t know how many times Barby has sat me down and said that I must sop stop forgetting things. I must check that I always have my possessions with me. I agree, I need to learn how to remember things. I […]
Bonkers daughter
One of my daughters enjoys a challenge. Its the same attitude that mountaineers have to mountains, they only climb them because they are there. She and a group of friends are going to cycle the length of Britain, Lands End to John O’Groats to raise money for charity. The distance they cycle will be 1000 […]
Emergency visit to Stoke Mandeville
2013 has not been a good year for me so far. This time an emergency trip to Stoke Mandeville hospital in the early hours of Wednesday morning, 20th Feb. So what happened to get me there? On Tuesday evening Barby and I went out for a curry with some friends. Just before we left the […]
Happy Birthday
The website is now one year old, a bit of a roller coaster ride but I think it deserves a Happy Birthday. I can still remember 1 February 2012, I had just been given the website, there was no content, a Facebook page but no followers and something called Twitter with no followers. Overwhelmed, daunted, […]
New Year’s Day
We had a small party at home on New Year’s Eve for 2013. I was woken by the dogs at about 9.30 in the morning on New Year’s day so I stumbled down stairs to let them out for a pee. I was coming back upstairs, took a left turn onto the landing and wallop, […]
Sleepless night
Friday night on 14 December 2012 was yet another sleepless night. I seem to have lost the knack of falling asleep. I managed to doze before finally dropping off at about 5 in the morning. When I woke up at about 9 I did not feel too awful, Barby said ‘stay in bed and get […]
Thoughts on counselling
Here are a few of my thoughts on counselling. How you feel about yourself Remember MS is a progressive disease and counselling does not provide an instant cure. Therapy or counselling can give you a chance to adapt your coping strategy. It is a chance to talk and to change your mind-set. Change how you […]
Railway stations and access for the disabled
Not enough railway stations provide step free access for the physically disabled. The problem Almost all the British railway system was built before disabled people existed in the public eye. When the stations were originally built lifts did not exist and disabled people were not in the mindset. If you wanted to get across the […]
Completing forms properly
I am disabled, I have advanced MS and I cannot work. Completing forms properly is essential if I am to receive any state benefit. PIP (Personal lndependence Payment) and Incapacity Work Benefit are forms for benefits I have had to complete. These forms are a nightmare, lots of difficult questions. They must be answered correctly […]
A big moan
If you are travelling by train from London Euston to Berkhamsted you must go down about 14 steps and then walk down a steep slope to get out of the station. The line runs at roof-top height. A big moan I am disabled and must use my mobility scooter (a Travelscoot) because I cannot walk. […]
The Meerkat Approach
I’m sure you know this is a picture of a meerkat, – it’s that cheeky looking creature that lives in the South African deserts. It stands up on its hind legs and keeps a very careful eye on its surroundings. A group of meerkats is known as a clan or a mob. They are very […]
