Quality of Life
Smouldering MS its my long-term condition
Smouldering MS, is my long-term condition, it is not a happy or relaxing disease. It can usually be endured with symptom management drugs and procedures. Its a complicated disease, hidden disabilities are a fact of life. A big problem is that no one has ever told me what the future would be when I was […]
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 […]
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. […]
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 […]
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 […]
Sending my TravelScoot back to Germany
I have an electrical fault with my TravelScoot and it is unusable. I reported the problem to the English office who told me to return it to Munich, the head office, for essential maintenance. Sending my TravelScoot back to Germany was fraught with problems. First things first I had to find a supplier of a […]
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 […]
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 […]
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 […]
I can now see light at the end of the tunnel
Someone told me my last couple of blogs were not optimistic, Guilty as charged. In my defence I say that advanced multiple sclerosis is a gritty disabling disease. It is always there, in your face and in your head. There is no escape from it. The good news is that in my head I can […]
Have you tried using a Knork?
I have slowly been losing sensation in the fingers of my left hand since late 2017. Now I am hardly able to twirl spaghetti round a fork. My writing has deteriorated as fine control has ebbed away, it’s now a childish scrawl. I struggle to unscrew the lids off jars and bottles. This isn’t right […]
Methods I use to manage my multiple sclerosis
Multiple sclerosis is a very unpredictable disease and tough to live with. I think we all know that; I certainly do. MS has now been a part of my life since 1972 but I was not diagnosed until 1995. Here some methods I use to manage my advanced multiple sclerosis. Everyone has their own way […]
Medical retirement 75 months ago
I took medical retirement in January 2012. That makes it sound like a voluntary decision so let me reword that. Medical retirement grabbed me 75 months ago in January 2012. For me there was no option. 🙁 A permanent holiday It sounds absolutely idyllic. I did not realise what an earth shattering process this was […]
Invisible disabilities are the hardest
Multiple sclerosis comes in all sorts of packages. There is no ‘one size fits all’. When I read the newspaper I look very healthy. As soon as I stand up everyone can see I’m seriously disabled. This is the flip side of MS, the invisible disabilities are the hardest to understand. Few would realise the […]
Is physical exercise good for me
I believe that exercise is good for me and essential to having a good quality of life even despIte suffering from aDVANCED ms MS. It is an excellent activity to re-connect the mind and body before or after a long day of stress. My MS stops aerobic exercise, getting all hot and sweaty. Even just […]
Flexible walking stick holder
Recently a friend wrote to me talking about this wonderful thing she uses to secure her walking stick onto her mobility scooter. “Foolproof” she said. I thought I would test it out and I did not expect to be so impressed. In every sense of the word this is a flexible walking stick holder. It […]
Call it advanced multiple sclerosis
Soon I’m going to be 64 so not quite as nimble as I was. Age doesn’t stop me having a social life. I go to the theatre and museums in London. Meet friends in one of the numerous coffee shops in our town. I go to the supermarket, buy the food and then cook dinner. […]
Creating my own social capital
Social capital is happening all the time around us. Reading this blog is social capital. Just being with other people gives you social capital. I expect you’ve already gone to Google and typed in those two words, billions of hits. Now I am creating my own social capital. Creating my own social capital I won’t […]
Trabasack Curved Lap Tray and Bag
Trabasack Curved LapTray and Bag is designed for use on a wheelchair. Its a new concept, beanbag lap tray that you carriy like a bag and use it on your lap whenever you need it. The tray inventor is a wheelchair user who fully understands what is necessary to make it useful. You could say it […]
I have discovered sitting-down gardening
Another change because of MS. Time to discover a different way to garden. Now it is now ‘plastic-lined’ boxes type of gardening. No more digging holes with a spade or bending over to pull up weeds. I have discovered sitting-down gardening. Perhaps it found me, who knows? Childhood My father introduced me to gardening when […]
Your Disability Living Allowance is ending
It was the usual brown envelope from the DWP with a return address of DWP PO Box 535 Belfast. It’s never an expensive white envelope and it’s never by first-class mail. Their letters always arrive on a Saturday morning just like this one, 21 April 2018. I opened it, the message was very simple, Your […]
MS for over 70 percent of my life
I am 63, born in 1954. I have lived with Multiple Sclerosis for 45 years, that’s a scary thought. It started in 1972 but I was not diagnosed until 1995. It morphed to secondary progressive or advanced MS in about 2000. I took medical retirement in 2012. I have had MS for over 70 percent of […]
Twenty injections within six minutes
It was a year to the day since my previous Botox injections. I was back in the in Uro Neurological surgery in Queen square London for another Botox injection. By now the benefits of my previous Botox injections, sometimes known as botulinum toxin-A, had worn off. If the truth of the matter were known my bladder […]
My MS clock has gone back a couple of years
I started taking Fampridine just over a couple of weeks ago. Yes, YEs, YES it really has worked. Right now I’m not too sure if my walking speed has increased sufficiently to receive the drug beyond the trial period. That it will be a bummer. Put walking speed to one side then so many other […]
Getting the best from my life
Enjoying life, it is the reason to get out of bed each morning. Okay I do have a few problems but hey who doesn’t? I’ve had multiple sclerosis for over two thirds of my life and now I’m medically retired. I’m still learning the art of getting the best from my life. The biggest game […]
Disabled access is not a tick box exercise
Access and facilities for physically disabled people are needed today and why ever not? It would be so unreasonable in this day and age to exclude the physically disabled from our activities. From my experience disabled access is turning into a tick box exercise. Remember disabled access is not a tick box exercise. Disabled access […]
Capability for Work questionnaire
Every once in a while the postman delivers a letter and I think ‘Uh oh this could be trouble’. On the front of this letter in big black letters I was told ‘IMPORTANT INFORMATION THIS IS NOT A CIRCULAR’ and it was ‘PRIVATE & CONFIDENTIAL’. The really important clue was the sender, printed on the back […]
A Simple Decision Every Morning
There are decisions I must make every day from the moment I wake up. I have to make a simple decision every morning when I get dressed. The result depends upon the mood I am in, how I feel when I wake up. It is my decision and it affects me for the rest of the […]
A Letter to Multiple Sclerosis
A Letter to Multiple Sclerosis You first visited me a long time ago. It was 1972, I was 18 and having a pint or two of beer. I went to the loo for a pee but nothing happened. In 1979 I had a serious bladder spasm and I wet myself at work. You went away […]
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 🙁 […]
Non Slip Outdoor Step
The Non Slip Outdoor Step is is a practical and clever idea. It instantly reduces the height of a step. The non slip outdoor step is ideal for giving you that little bit of added help when tackling large doorsteps. Its allowing you to take two smaller steps rather than struggling with one large step. All […]
Diagnosed with MS And You Drive A Car
If you are diagnosed with MS (multiple sclerosis) and you drive a car then here is some good news. There are one or two hoops that you must now jump through when you get the diagnosis. You must tell the Driver and Vehicle Licensing Agency (DVLA) that you have been diagnosed with MS. Also the […]
Glasses for Double Vision
It was double vision that led to my diagnosis of MS in 1994. Twenty years later double vision was turning into a serious problem. Prisms are included into the prescription and these are then glasses for double vision. The problem for me was that my double vision had reach the stage where prisms could not […]
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 […]
Traveljohn disposable urine bottle
Imagine you are desperate to have a ‘Jimmy Riddle’ (widdle) or pass urine and there is nowhere to go. The TravelJohn Disposable Urine bottle does the trick when you gotta have a pee. It avoids the problem when you might wet your pants. It can be used by both men and women. Incidentally the Traveljohn disposable urine […]
Multiple Sclerosis and Tai Chi
Tai Chi is a Chinese martial art. Shibashi, a form of Tai Chi, are 18 simple exercises that are easy to learn Recently I attended a physiotherapy session at the MS Therapy Centre at Halton where I was introduced to the Shibashi exercise routines. Multiple Sclerosis and Tai Chi Shibashi are coordinated movements performed in a […]
