Living With MS
Life in a MS houeshold
Can the elephant stay out of the room
In February 2017 I wrote a blog about getting Botox injections for my bladder. Looking back it makes an enormous difference to my life. It changed, totally changed. Suddenly I did not have to worry about finding the loo or embarrassing myself. It was as if an enormous elephant had left the room. Describe it […]
Does my disability make me worth less?
So Christmas is done and dusted for another year. Decorations have been taken down and put in the loft. The Boy Scouts have collected the tree and recycled it. We’ve even managed to empty the fridge. Now wouldn’t it be lovely if I could just pack up my MS and store that in the loft […]
The Website aid4disabled.com
There are numerous multiple sclerosis (MS) websites. There are those run by large organisations and there are ones like this one, run by one man and his dog. I hope this one is different and makes you curious. The main aims of the website Aid4disabled.com are to provide two different services. The two main functions […]
Three weeks of taking Fampridine
Friday, 22 December, I think that date will be etched on my memory for many years. Three weeks of taking Fampridine. I knew it’d helped me but the icy test was going to be measuring my new walking speed. Had Fampridine increased my walking speed enough for me to receive it on prescription? Three weeks […]
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 […]
Will Fampridine improve my quality of life
The physiotherapists at Queens Square neurological hospital offered me Fampridine in the summer of 2017. I knew that Fampridine also known as Fampyra could improve my walking speed. Sadly it doesn’t make the process any safer. None the less I reckoned it was worth trying out. Will Fampridine improve my quality of life When I […]
Dragon Dictation Software
Over the last couple of years MS has stolen the dexterity from my fingers. Years ago I tried to teach myself touch typing with no success. My finger tips are numb, thanks MS, so I can’t feel the bar on the keyboard for the letters J and F. I struggled on, typing was horribly erratic […]
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 […]
Just another little fall
In the kitchen I must use a stool on wheels. The Wife and I were cooking supper last Sunday and everything was getting a bit fraught. Not enough pairs of hands to prepare everything. I moved forward on my stool but a wheel got stuck in the grouting between two floor tiles. The stool stopped […]
Nobody mentioned grab rails
I guess a few of you who are reading this have got that irritating little disease, multiple sclerosis. It’s the way it advances. Step by step it creeps up on you. It’s funny how something that wasn’t a problem changes and becomes a problem. Even worse, suddenly its an ‘in your face’ problem. We had […]
MS-SMART drug trial after 92 weeks
Its almost 92 weeks since I started the MS-SMART drug trial. The time has flown by. The trial as been straight forward. Just pop a pill every morning and again in the evening. Well almost every evening, sometimes when I go out in the evening I forget to take one with me and when I get […]
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 […]
Paying people who receive benefits
I recently attended a one day seminar on ‘paying people who receive benefits’. Typically these people are service users. How can I condense an intense six hour seminar into 500 words? Not easy, so here are a few important points. Paying people who receive benefits is not straight forward. The rules are complex. Also the […]
MS society walk
On Sunday, 24 September I went to Battersea Park in London to take part in the MS society walk. I left the house at a 8:45, caught the train to Euston and arrived at the start just after 11. I had hoped to be there earlier. Getting to Battersea Park from Euston station by public […]
Expert by Experience
I have never liked the term ‘Service User’. Would I rather be called a ‘Client’ or a ‘Patient’? No I don’t like them either. I think the term ‘Co Worker’ is okay but not perfect. I do like the idea of Expert by Experience. It is a positive description. In the video just below I […]
FCAROLYN silk eye patch
Double vision is a huge hidden disability for me. In April 2015 it reached a critical point. My optician could no longer correct the problem using prisms in my glasses. I then discovered the FCAROLYN Eye Patch. The FCAROLYN silk eye patch is such a good solution for double vision. FCAROLYN silk eye patch It […]
Every morning I have to stretch my stiff muscles
Imagine getting straight out of bed and immediately walking into the bathroom, Haha those were the days and I can still remember them; must have stopped about 2012. Nowadays I have to start my day differently, I must stretch my stiff muscles. Multiple sclerosis is the culprit. What did I do in my sleep? Last […]
Two stories using my Travelscoot
I have owned a TravelScoot since 2010. Here are two stories using my Travelscoot. Just in case you didn’t know the Travelscoot is the lightest mobility scooter, has a unique design and is practical in so many ways. Two stories using my Travelscoot It is known affectionately as The Trike. Everywhere I go The Trike […]
Progressive multiple sclerosis treatment
Options for progressive multiple sclerosis treatment are non-existent. If you have recently been diagnosed with MS then there are treatments available to reduce and even stop progression. That is fantastic news but it is too late for so many people. I am one of those people If you have progressive MS then the outlook is […]
Multiple sclerosis is a funny old disease
Multiple sclerosis is a funny old disease. No it is definitely not funny ha ha. Trying to get my head around continual progression ain’t easy. There are always changes and it catches me out. I just get the hang of what’s happening then there is a bit more progression. Multiple sclerosis is a funny old […]
Life before diagnosis of multiple sclerosis
I was diagnosed with multiple sclerosis in 1995 but my journey started much earlier. In 1972, only 18, I was in the pub having some beers with a couple of friends. Suddenly I had the urge to go to the loo but when I went nothing happened. I didn’t think anything of it at the […]
Sometimes I cannot get out of first gear
We can all have good days and bad days. People with Multiple Sclerosis seem to have more bad days than good days. Just at the moment I’m not sleeping well. During the day sometimes I cannot get out of first gear. It is sooooo frustrating. It is an invisible symptom. Just at the moment I’m […]
Can I walk at least six kilometres
On 24th September 2017 the MS Society is organising a sponsored walk called ‘Together we walk’. On their website they state ‘This September hundreds of MS Superstars, our friends and families, will join forces in London to take in the sights and raise funds to stop MS. Will you join us?’ Can I walk at […]
Action packed couple of days in Barcelona
I flew out to Barcelona for a couple of days. I took The Trike with me as one does. No, I was not going on a holiday. It was for a meeting with RADAR-CNS. A research project wanting to develop ways to measure Long Term Conditions using wearable devices and smartphone technology. I was there as a […]
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 […]
Totally unrestricted and able to move easily
There was a wonderful time when I had felt totally unrestricted and able to move easily. Even on the fateful day in 1995 when the consultant diagnosed me with multiple sclerosis I was just a normal guy. Multiple sclerosis, I had never heard of it. I had to look it up in an encyclopaedia and […]
Think about the positives
Too many people with progressive MS suffer in the heat, I know I do. I’m not naturally lazy quite simply I am clobbered by the heat. The energy just drains out of my body and worse if its humid as well. Two hot days and already I’m apprehensive of the summer. I must remember to […]
Penultimate visit for the MS SMART drug trial
My penultimate visit for the MS SMART drug trial was always going to be a very short visit. Replace the old pills with a new set. These will then see me through for the final six months of the trial. I also give some blood, how I hate injections, I even have to shut my […]
The Wife and I flew to Barcelona from Luton airport
When I am going on holiday I start at point A, have my holiday at point B then return to point A at the end of the holiday. In this case it was a five day city break in Barcelona. The Wife and I flew to Barcelona from Luton airport. What can I say about […]
Stumble fall crunch and wallop
Monday evening We had finished watching episode 5 of Line of Duty. No spoilers I promise. Program finished and we were done. All that was left was to clear up the room and toddle off to bed. The Wife had taken the glasses through to the kitchen. All I had to do was switch off […]
I love my Taotronics LED desk lamp
I bought a Taotronics light over a year ago and I have not broken it yet; that is a good start.. It is an energy-saving and eco-friendly lamp. I guess these features make up for the terrible title to this blog so if you have read this much you might read the rest of the […]
Another sponsored walk
Well it’s another year and I am starting to think about one of my annual challenges. I like to have challenges. They have to be achievable and put me outside of my comfort zone. So time for another sponsored walk. The right distance In 2015 I had tried to walk a mile with my rollator […]
Another milestone in the inevitable progression of my MS
Something has definitely changed in the last few weeks. It was not an ‘Oh my God’ moment as in a flash of inspiration. Instead it was an ‘Oh my God’ realisation and it took a few weeks for me to understand. Let’s call it another milestone in the inevitable progression of my MS. Life moves […]
Reasons why I enjoy my Travelscoot
I first saw a Travelscoot in the summer of 2010. Straight away I knew it was going to be the ideal solution for me. By then multiple sclerosis had limited my walking to the extent that I struggled to walk more than a mile. Up until then I had managed with a manual wheelchair but […]
Bed is the only place for you
Thursday 30th of April arrived I felt decidedly second-hand when I woke up and it went downhill from there. I felt as if I had been rejected by the local rubbish dump. Eventually I retired to bed very early in the evening. MrsB took my temperature, 38.3 and added. “Yup, bed is the only place […]
Feeling of being flattened by a steamroller
Do you remember a blog I wrote a month ago? The Department of Work and Pensions (DWP) summoned me to an interview. I arrived at the appointed hour and came out 30 minutes later feeling as if I had been mauled by an angry lion or flattened by a steam roller. This will definitely not rank […]
