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
Living with multiple sclerosis is a challenge
Living with advanced multiple sclerosis is so time consuming, thank goodness I’ve retired. Also my MS has deteriorated more rapidly since medical retirement in 2012. Now it significantly affects both my quality of life and way I live my life. Both have changed drastically because of this ghastly disease and so many of the problems […]
Difficult to believe this really happened
Its difficult to believe what I’m going to tell you. It happened at my doctors surgery. Its all about obtaining items on a medical prescription. Right below are the rules, the last two are specific to my surgery. If I want anything medical that cannot be bought over the counter then I need a prescription. […]
Annual appointment with the MS consultant
Just recently I had my annual appointment with the MS consultant. He said it could only last 15 minutes. He did apologise for such a brief slot AND I couldn’t help but feel short changed. I could only discuss my 3 worst symptoms. He started “Has it got worse”? I thought to myself “This is […]
Life with MS, always adapting to a new normal
My life with MS as a retired man is much easier than when I was working. Medical retirement took me in 2012, aged 58. I then spent a couple of years wandering around trying to adjust to the new life. Two years talking to a counsellor for 45 minutes once a week in the evening […]
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 […]
Using a wheelchair, do I need L-plates
Using a wheelchair sounds really easy. Self propelling wheelchairs have much bigger rear wheels which have push-rims fitted to them. Now I can move the chair myself and be independent. Well, that all sounds super easy. Mind you there are problems being a wheelchair user that had not crossed my mind until I started to use […]
Do you know I have smouldering MS
I have smouldering MS. Multiple sclerosis first struck in 1972 when I was only 18. My bladder let me down on several occasions in the next 10 years. I didn’t speak to anyone about this problem, young men do not like going to the doctor. Big mistake, but I doubt if anyone would have made […]
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 […]
Feet are made for standing
Feet are made for standing, its something people take for granted. OK I admit that walking, running and jumping also involve feet but standing on them is a basic function. “Learn to stand on your own two feet” and “Rushed off your feet” are two common phrases that involve being on your feet. My mobility […]
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 […]
