Diary of a Man with MS
Started in June 2016. Diary of a man with MS is a sporadic report of my life with MS. There are so many ups and downs, twists and turns. Sometimes I think it is worth telling other people about them.
Sometimes I want to keep the story to myself. None the less this whole website is a story of my life especially the tab ‘Living with MS’.
Diary of a man with MS
MS is another piece of baggage that can make the emotional roller-cosaster ride of life even more exciting or should I say daunting as well as frustrating.
An after thought
I have divided the diary section up into years that way it is easier to see what happens and when. I think this makes it more logical.
Unless I am careful this website is going to get too large and unwieldy. Maybe it is there already. Who knows?
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 […]
I’m talking about Uhthoff’s syndrome
The mercury in the thermometer will creep up over the summer. Some days it creeps higher than other days. Whilst it remains below 20 I am more than happy, 21 or 22 and I need to be careful. If it gets over 23 then I can only venture out occasionally. I’m talking about Uhthoff’s syndrome. […]
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 […]
Some of my MS disabilities are invisible
Multiple sclerosis rules my life. Even when I think I am on the home run it will stick out a tentacle and trip me up. You too as well I guess. I have obvious disabilities such as walking, in fact I cannot walk unaided. Some of my MS disabilities are invisible. People will not know […]
Physically disabled in Athens a survival guide
I am on the Patient Advisory Board for the RADAR-CNS project. This is an exciting and ground-breaking project and rather than me explaining it, I suggest you go to their website which is HERE. This year their annual conference was in Athens and I was there for four days in mid May. If you are […]
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 […]
Oxo Good Grips angled measuring jug
Oxo Good Grips angled measuring jug is a new take on an established design. It is a very practical addition to your kitchen. It’s so easy to use. When I want to measure hot or cold liquid I place the Oxo measuring jug on a work surface. Now I can sit down in a chair […]
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 […]
Multiple sclerosis is a vile disease
MS smothers you, wraps you up in its tentacles and replaces energy with fatigue. I can no longer do things that other people take completely for granted. Even worse there is nothing predictable about it except it just gets worse and worse and worse. It can even lurk in the body for years before its […]
Five day city break in Seville
I’ve never been to Seville before and the idea of a city break in February appealed to me. Of course I had to take usual paraphernalia that a disabled person needs when going away. We had found a hotel in Seville with an accessible room, crucially a walk-in shower. As soon as I had booked […]
Negotiations with the NHS after a UTI
Within 3 hours of arriving in Seville on 14 Feb I was in a hospital because of a UTI, a nasty bacterial infection. An indwelling catheter was inserted into my bladder; a 6 inch piece of rubber tubing hanging off the end of my willy, it was no fun. A simple rubber bung jammed into […]
Five fly to Seville and I got myself a UTI
Five of us fly to Seville for a five day holiday on Valentines day. The Ryanair flight left Stansted airport at 6.40 in the morning. It’s a 3 hour flight and it takes an hour to drive there. It was going to be a long day but at least I had a little nap during […]
My long journey with multiple sclerosis
This is the story of 45 years of my life living with multiple sclerosis as we both grew up. I did not piece the whole story together until I took medical retirement in 2012. My long journey with multiple sclerosis. My long journey with multiple sclerosis It all started in 1972 and I was almost […]
My first job interview since 2012
Recently I received an email from a charity that wanted to interview me for a zero hour contract position. I have advanced multiple sclerosis and I cannot walk unaided which I disclosed on the application form. This was going to be my first job interview since 2012. My MS blew the last one in 2012 […]
Ways to Help Cope with an MS Diagnosis
A guest post from Dizzy and the Dinosaurs. You can visit the blog at dinosaursdonkeysandms.com Ways to Help Cope with an MS Diagnosis It was nearly four years ago that I was diagnosed with MS. And for me it was rather a shock. Before I started acquiring my weird collection of symptoms (have buzzy feet, seeing […]
Making an annual wish to improve my life
Back in the day I would make a resolution every New Year’s eve. Its such an easy thing to say when I’ve drunk a glass a glass or two too many. Everyone else has made one so why shouldn’t I? Now I’m a bit softer in the stomach and wiser in the head so I’ve […]
Simple things I now need to understand
A few years ago I kidded myself that I could still do the things just like I did in the noughties. Simple things I now need to understand. “Don’t worry, I can do it” I shouted enthusiastically as I was starting jobs like cooking supper. It would all begin swimmingly. Suddenly, out of the blue, […]
Detected definite changes since last year
It is extraordinary how one year rolls into the next at an ever increasing speed. At a quick glance I am exactly the same as 12 months ago. I’ve still got MS, who saw that one coming! I still ride The Trike and I’m still just as busy. Now scratch beneath the surface. I have […]
My amazing Travelscoot and true independence
Guest post written by Abgail Budd. I finally accepted my need for wheels in 2014, six years after my diagnosis of multiple sclerosis. I’d been spending time with local people who also suffer from MS. I had struggled with 2 walking sticks but I would miss out on so much due to sheer exhaustion and […]
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. […]
Doing Pilates sitting down
Pilates is a stretching and exercise program focusing on core muscles. These are the ones in your stomach. Keeping these muscles healthy does help my balance and walking. To put it bluntly this means I don’t need to use a wheelchair just yet. It’s only too easy to say “Oh I need to take some […]
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 […]
Unplanned flight incidents for my Travelscoot
I think I’ve got a problem sorted then something happens and no amount of planning I do can possibly predict this. I have just returned from a five-week trip to Australia with seven flights. Call two of them problematic 🙁 just unplanned flight incidents for my TravelScoot. My mobility scooter was damaged by an airline twice […]
Getting air miles with my Travelscoot
I am the proud owner of a TravelScoot lightweight folding mobility scooter. I have my scooter safely on over 75 flights. There are simple rules to follow that will significantly reduce the chances of damage to the precious scooter. Unfortunately accidents can happen. Here are a few simple precautions that you need to take. Getting […]
I am physically disabled but I still travel
When I was working I travelled all over the world then medical retirement kicked me in the groin. Life as I knew it suddenly changed. Occasionally I still get the urge to travel, this time me and MrsB went to Australia. I am physically disabled but I still travel. Cut the stress I have just […]
VELA Salsa sit-stand chair
People have sat on something since they descended from the trees. A three legged stool is probably the earliest form of seat furniture, no back or arm rests and always stable though not necessarily level. The Vela Salsa sit-stand chair is at the opposite end of the spectrum. I want to tell you why the […]
DWP decide my Personal Independence Payment
This morning I received a brown envelope from Belfast. I knew the contents straightaway, the DWP had made a decision. I had already read the assessor ‘s report. How will the DWP decide my Personal Independence Payment benefits. A normal life I did not know if the DWP decision was going to be a mere […]
Assessment for my PIP benefits
A week after my face-to-face assessment I phoned up the DWP and requested a copy of the assessor’s report. I was told to expect it within 7 to 10 working days. Two weeks later I received a letter from the DWP which said they now had enough information to be able to make a decision […]
Three vignettes from the last few days
A change to the usual post; three vignettes from the last few days. August was supposed to be a quiet month but there has been something happening nearly every day. Summer is now over and the days are getting noticeably shorter. The ‘to do’ list was supposed to shrink, instead it has grown. Looking ahead Next […]
handSteady drinking mug
Do you have such a severe tremor that drinking from a normal cup is difficult? If you are unlucky enough to have a tremor in the arms weak wrists or weak hands? If that is the case then a handSteady drinking mug could be the solution. Incidentally it will also help if you have difficulty […]
Over 30 degrees Celsius this summer
The summer of 1976, was so hot that I got a good suntan in Aberdeen. A student job, I was working outdoors every day. In Hertfordshire the temperature has frequently been over 30 degrees Celsius this summer. At times it’s been far too hot, stuffy and airless for my own comfort. Let me explain Don’t get […]
Universal Holder For A Smartphone
Almost all of us are addicted to or owner of a smart phones I find the Google Maps utility very useful especially when going to places in London on The Trike. It is very easy to attach the Universal Holder for a Smartphone to a Travelscoot and now it is indispensable. Addicted, no, I just love some gadgets. […]
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 […]
PIP face to face assessment
Finally Wednesday 1 August has arrived, it’s my PIP face to face assessment. I had not slept well the previous night. Stress and worry were not the only reasons, that irascible little friend MS was in the mix. I just could not get out of bed as early as usual. In fact it was a […]
