Living With MS
Life in a MS houeshold
Downsize to a flat, the story has just started
We live in a Victorian terraced house. Downsize to a flat is our next step but the challenges have only just begun. We moved into this house over 20 years ago and its now time to move on and start a new chapter in our lives. The children grew up here and now lead independent […]
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 […]
Thoughts on buying a mobility scooter
You are disabled and your mobility is getting worse. Now you realise you can no longer comfortably walk very far so you need to think on this. Distance is not the only problem, speed, balance and carrying also come into the equation. Thoughts turn to buying a mobility scooter. Original mobility scooter They first appeared […]
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 […]
Mobility scooter needs a bus permit
In late July 2017 I was getting onto a bus at High Wycombe with my mobility scooter. The Arriva bus driver said “The mobility scooter needs a bus permit. Can I see it” Arriva are responsible for running all the buses in the towns close to where I live. I have to use the buses […]
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. […]
My MS journey begins, 24 years before diagnosis
Some events are very significant, and the emotional impact is unforgettable. Think of marriage, death of a spouse or parent. I will never forget that moment in 1996 when the consultant uttered the words “You have multiple sclerosis”. Many years later I realised my MS journey started 24 years before my diagnosis. My MS journey […]
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 […]
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. […]
A sponsored walkathon by me with my MS
Last year I challenged myself to keep walking for one hour. I did that in September. Then I set myself a challenge for 2021. Complete 25 walks each month of the year each one at least 500 metres. I managed 25 walks in January, on target. Snow, wind, rain and frost totally ruined my plans […]
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 […]
