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

Feet are made for standing

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 […]

Read More...

6 comments

Advanced MS and sitting down exercises

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 […]

Read More...

6 comments

Poor balance and mobility makes walking difficult

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 […]

Read More...

2 comments

Do we really need a car in London?

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 […]

Read More...

3 comments

A short visit to Woburn Centre Parcs

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 […]

Read More...

5 comments

3 traumatic injuries to me

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 […]

Read More...

2 comments

My life with MS and invisible disabilities

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 […]

Read More...

4 comments

Time to move into a more suitable property

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 […]

Read More...

14 comments

My own cannabis experiment

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. […]

Read More...

10 comments

I forget what I was going to tell you

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 […]

Read More...

12 comments

What has happened to my energy?

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 […]

Read More...

12 comments

A UTI with advanced multiple sclerosis is no fun

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 […]

Read More...

5 comments

My interview on Tring Today – Friday 18 February

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 […]

Read More...

7 comments

Shopping in a wheelchair is a challenge

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. […]

Read More...

6 comments

Understand MS fatigue, logic can fly out of the window

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. […]

Read More...

7 comments

Something vaguely interesting, dining across the divide

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 […]

Read More...

2 comments

I attempt a stupid walking challenge, only 100 Km

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 […]

Read More...

0 comments

Would  a spiky ball foot massage help me with my balance?

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 […]

Read More...

6 comments

Medical retirement sounds relaxing until it happens

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 […]

Read More...

2 comments

Now I’m comfortable in my skin

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 […]

Read More...

3 comments

Broken skin: my Functional Electrical Stimulation story

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 […]

Read More...

0 comments

The curious incident of the missing disability ramp

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 […]

Read More...

0 comments

Dog chews the internet cable

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 […]

Read More...

0 comments

I have a radio show

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 […]

Read More...

2 comments

2021 MS Awareness Week or living with my multiple sclerosis

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 […]

Read More...

2 comments

My positive attitude despite MS disability

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 […]

Read More...

4 comments

The urgent search for hope by Patrick Burke

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 […]

Read More...

6 comments

With MS I now move like a tortoise slow but steady

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 […]

Read More...

4 comments

I’m a lucky guy Fampridine works for me

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. […]

Read More...

4 comments

Table topics competition at Toastmasters floors me

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 […]

Read More...

4 comments

Now I’m a volunteer with Tring radio

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 […]

Read More...

6 comments

Managing MS fatigue, an overwhelming inability to continue

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 […]

Read More...

6 comments

Now I have twitchy legs at night

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 […]

Read More...

2 comments

Blogger’s block or possibly bored with lock down

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 […]

Read More...

0 comments

My exercise routine at home that ticks a lot of boxes

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? […]

Read More...

0 comments

Busy doing nothing, I want some variation

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 […]

Read More...

6 comments