Living With MS
Life in a MS houeshold
My sewing skills are tested in the Under and Over trial
Twelve weeks to test my sewing skills. Another one of my MS stories. That old friend MS is now slowly destroying the nerves I use to control the fingers of my left hand. Find out how I discover my sewing skills have deteriorated. My sewing skills There was a time, many years ago when I […]
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 […]
Under & Over Rehabilitation Trial
This is an opportunity to check out if a daily 30 minute sewing exercise program can help with rehabilitation of arms, fingers and hands. This sounds absolutely ideal for me. Its called the Under & Over Rehabilitation trial. People take it for granted that they can write, use a cork screw or peel an onion. […]
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 […]
The day I walk for one hour
Its a wonderful September day. Warm enough to wear shorts but not so hot to become a shade seeking missile. Three months of preparation and I had one hour to prove that I could do it. Yup, Sunday 13th September was the day when I was going to walk for one hour and you had […]
I’m planning a sponsored walk #Walk4onehour
Lockdown and my world is changing. Still no one knows anything about the future. I knew I had to get out of the house and take some exercise to maintain my mental health plus I needed a goal. A sponsored walk. Perhaps I could organise it and do it, this would tick so many boxes. […]
MS Botox bladder injections are life changing
There are very few things that really improve the quality of my MS addled life. A few days ago I had MS Botox bladder injections for my squiffy bladder. An elephant left the room within 24 hours. Now I can casually stroll past a loo without thinking “Golly I must go in and have a […]
I will always love my Travelscoot mobility scooter
I have owned a Travelscoot mobility scooter for ten years and it is still fun to ride. I have not seen another mobility scooter that is as versatile or manoeuvrable. As I cruise along the pavement, I see pedestrians eyeing up my scooter and they always look envious. Even after 10 years I still love […]
Topro Troja Rollator
The Topro Troja Rollator is a robust and reliable 4 wheeled walker. It is recommended to many multiple sclerosis sufferers who do not find walking easy and have poor balance. I have advanced MS and suffer from both these problems. I love this rollator because it is well designed, light as well as robust. Also […]
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 […]
Patrick has found an important challenge to overcome
I need a challenge to overcome in my life. Lockdown has been a double-edged weapon for me. Watching the garden grow and evolve over the last three or four months has given me enormous pleasure. This garden project will last for the rest of the year. Finding the energy to take exercise was the problem. […]
I am Patrick and I have advanced multiple sclerosis
I am Patrick and I have advanced multiple sclerosis; A physically active life is no longer possible, balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple sclerosis (MS). The beginning I am convinced my multiple sclerosis started in 1972, my […]
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? […]
Our garden creates positive moments for us
28 May 2020. Every cloud has a silver lining. Our garden creates positive moments for us. Since early March there has been an enormous cloud hanging over this country. This cloud forced our little niche business to close. The Wife is responsible for looking after up to half a dozen dogs each day while the […]
I enjoy a spontaneous event during the lock down
23 May 2019 I enjoy a spontaneous event. Something completely unplanned and it must make me feel happy During the lock down caused by Covid19 pandemic so many of these little life-events have stopped. I really was pleased to see the back of a few but there so many that I really miss. I enjoy […]
Now it is the boredom since lock down started
11/05/2020 Its now over 7 weeks since the Covid19 lock down started, boredom is definitely hovering on the perimeters of my life. Retaining focus and motivation are getting harder. Over the years me and MrsB have developed a good coping strategy and mutual understanding but these are unusual times. We are both stressed and frustrated […]
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 […]
Adapt my MS normal to Covid 19 isolation normal
9 April 2020. Right now the chips are down. I need to find a new life that includes Covid 19 isolation. I must not allow depression or anxiety to intrude or overwhelm life. We all need to come up with a new strategy or routine. I must change my MS normal to Covid 19 isolation. […]
An MS crisis with my dysfunctional bladder
29 March 2020. This MS crisis started when I was on holiday in Valencia in February 2019. I woke up one morning wanting a pee but I was unable to insert a catheter into my bladder. The unflappable hotel staff directed me and The Wife to hospital where I was diagnosed with a UTI and […]
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 […]
Joseph Joseph Chop2pot Folding Chopping Board
Someone gave me a Chop2Pot folding chopping board as a present. I use it whenever I am preparing food to cook. The biggest advantage for me is I use it to transfer food from a large and heavy wooden chopping board to the cooking pot. I am clumsy and moving hot pots and pans between […]
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 […]
Ideal solution to an FES problem
I must carry my Functional Electrical Stimulator (FES) and it is quite bulky. Yup, I suffer from multiple sclerosis and like so many others I have foot drop. I use a dual channel FES to help me with walking. My problem, how do I carry my FES so it is safe, secure and easy to […]
