Living With MS
Life in a MS houeshold
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 […]
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 […]
MS Society introduces the 1 Km walk
Sport is an area of society in which ableism is seen only too often. Finally the society is embracing people with progressive MS and mobility issues in a positive way. Eventually the MS Society introduces the 1 Km walk It is only within the last ten to fifteen years that Western society recognises athletes with […]
One Hell of a Day
There have been some cracking days this summer. Yup, it has been a bit hot but I have really enjoyed getting dressed in just a T-shirt and a pair of shorts. Like all good things there will be an end. I had a bit of a hiccup on Monday 9th July. It really was one […]
A progressive disease is one that gets worse
A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences? Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis? I […]
Aid4Disabled is nominated as an MS blog
I’m wary of emails from people or organisations that I have never heard of. I receive an enormous amount of spam email. Its when they begin “Hi Aid4Disabled”, I look no further and press the delete key. Imagine my surprise when an email told me “Aid4Disabled is nominated as an MS blog”. How did it […]
After finishing the MS-SMART drug trial
I was a participant in the MS-SMART drug trial. If you look back over the blogs I wrote while I was on the trial my MS didn’t seem to get worse. A big question comes was after finishing the MS-SMART drug trial. Was I on a placebo, a treatment with no active therapeutic effect, or did the […]
My PIP benefits form is in the post
I am in France it’s a beautiful hot sunny day but I cannot sit outside. Uhthoff’s syndrome has put paid to that little pleasure. Back to the plot. My PIP benefits form is in the post. So relieved that I have finished it. Bit controversial here Why do the DWP need to make their questions […]
DWP will discover and evaluate what I cannot do
The DWP have kept their side of the bargain. I have received a form so I can explain how my disability affects me. It’s a horror, 40 pages booklet with about 45 questions and statements to be completed. DWP will discover and evaluate what I cannot do. I am then awarded PIP benefits but its […]
Multiple sclerosis has its lesions and inflammation
Just when you think there is a glimmer of hope, a tiny twinkle of light at the end of the tunnel, it is surprising how easily that little spark of optimism can be extinguished. Life with nearly every single Long Term Condition can be really rough. Multiple sclerosis has its lesions and inflammation. This causes the […]
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 […]
Disabled man flies to Prague
I went Prague for a RADAR-CNS conference. I flew with British Airways from London Heathrow airport. When you have mobility problems then travelling anywhere is never easy. Something somewhere is bound to go wrong. Disabled man flies to Prague has a few interesting twists. Nothing is straight forward. There is never any problem riding The […]
Walking round the supermarket with a trolley
When I started taking Fampridine the physiotherapist was insistent that I take more exercise. I mentioned that I go to the supermarket every day and do the shopping on The Trike (3 wheel light-weight mobility scooter). Her eyes lit up, “I know what you can do” she said. “This is an idea. Walking round the supermarket […]
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 […]
Multiple sclerosis is such an unpredictable disease
I am getting my life back onto an even keel. Botox is working, Fampridine looks like it’s a winner and spring is in the air. Just when I think all is looking hunky dory and everything is under control ,BANG, something hit me in the solar plexus. Multiple sclerosis is such an unpredictable disease. It […]
#ThinkHand Campaign for Advanced Multiple Sclerosis
I attended the launch of the #ThinkHand campaign for advanced multiple sclerosis by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February. I have advanced MS and this is a big step in the right direction. My multiple sclerosis I can still walk, but it is a very slow walk and […]
Disabled man sees Iolanthe at the Coliseum
MrsB and I went up to London to see Iolanthe, a Gilbert and Sullivan Operetta performed by the English National Opera (ENO). It was a fantastic performance, bit frothy but we both enjoyed it. You’re probably thinking that we are rolling in money and with rather aristocratic tastes. Nothing could be further from the truth. […]
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 […]
Will the lumbar puncture hurt?
I have now had four lumbar punctures. A small sample of fluid is taken from the spinal cord to measure the activity of multiple sclerosis. Think lumbar puncture and my hair stands on end. The idea of a syringe going into my spine and thinking ‘will the lumbar puncture hurt?’ are two concepts I don’t like […]
Looking on the bright side of life
Everyone who has progressive MS has their own unique set of difficulties. The issues can’t be papered over, they are with you day in, day out, all day and every day. I have one visible problem, mobility or balance and an invisible problem, my bladder. Of course I’m always looking on the bright side of […]
