Living With MS
Life in a MS houeshold
My left shoulder
Those of you in the know will be familiar with the accidents and injuries that I have done to my left shoulder. It has taken the brunt of a couple of falls as well as the odd stumble. The first dislocation happened in January 2013 and then another visit to hospital in February this year […]
Information you need to know
I am going to tell you information that I think is important. One is about your consultant and the other refers to multiple sclerosis and the two are linked. This is information that my consultant Professor Giovannoni talks about in his blog and I feel it is vitally important that other people know this. It’s […]
MS Life 2014
This was a weekend where an MS sufferer was able to mix with and see other MS Sufferers courtesy of the Multiple Sclerosis society UK. MS Life 2014 was a golden opportunity to find out so much. Latest research, symptom management, get expert advice and tips on living with MS were subjects you could explore. […]
Benefits of Vitamin D
Vitamin D and sunlight lead to so many benefits, it is the sunshine vitamin. Time in the sun makes you feel better but there are some MS sufferers who avoid the sun because an increase in body temperature is not a good idea. Get the benefits of Vitamin D by taking the capsules. Vitamin D […]
Railway stations, access for disabled travellers
A friend alerted me to this article from the Independent. It describes how funding to improve access for disabled passengers at railway stations is being slashed. The United Kingdom considers itself to be a civilised country but so many train stations are not disabled friendly, they are inaccessible? I won’t paraphrase the article. Instead I […]
Week 84
Its now week 84 of the ASCEND trial, the weeks seems to have have rolled by ever so quickly. I can’t believe I’m nearly at the end. The real thing? Even after week 84 I have no idea whether I’m on a placebo or not. Looking back over the months of the trial my balance […]
Its the little things
Do people really know what it is like to have a progressive physical disability? What took a couple of seconds now takes me a couple of minutes or more. People see me around town I’m always cheerful and positive when people see me in town or at networking meetings. It’s what goes on behind the […]
A sense of balance
Many MSers who have SPMS do not have very good sense of balance. Now imagine this, you are momentarily distracted, you lose your sense of balance and fall over. As you fall over you put out a hand to protect yourself and you dislocate a shoulder. I’m guilty as charged. Do you see what I […]
Multiple Sclerosis Word Cloud
The plan I want to build a word cloud or a picture of words that is associated with multiple sclerosis. This is a way to visualize text. A word cloud picture shows the frequency of word usage and the more frequently a word is used so the size of the word in the word cloud […]
Falling Over Again, 25th February
It’s something we, I mean those who have balance issues, are always frightened of; falling over and then a visit to hospital to repair the injury. Well I did it again. How did I do it this time? You must have seen the famous Only Fools and Horses episode where Delboy leans against a bar […]
Yes I Agree, Exercise is Good For MS Sufferers
Lots of learned people are now saying that exercise is good for MS sufferers and yes I agree. I have always thought that exercise is good for you. On what basis can I back up this obvious statement for MS sufferers? A bit of background Our Golden Retriever, Tonks, did something to one her knees […]
Breville Hot Cup of Water Dispenser
The Breville cup of hot water dispenser is energy efficient and a safe way to get a cup full of boiling hot water. Absolutely ideal for me because my sense of balance is not good, multiple sclerosis is the culprit. Breville cup of not water dispenser It is very simple to use and it is […]
The symptoms and progression of MS
The symptoms and progression of MS are unique for everyone. It is both a complicated and complex disease. I believe that Relapsing Remitting Multiple Sclerosis and Secondary Progressive Multiple Sclerosis are different diseases. I always thought this was a possibility. RRMS comes and goes, SPMS gradually nibbles away at the central nervous system and the […]
Chilterns MS Centre
Chilterns MS Centre moved into a new building in 2013. It used to be in a small prefab concrete single story building. Money was raised to build a much larger new two storey Chilterns MS Centre. The annual cost of running the new building has exceeded expectations. Turn it into a viable business Robert Breakwell, […]
City University and my Travelscoot
I had been asked to give a talk at London City University on Tuesday 4th Feb at 1 pm. I was talking to 2nd year nursing students. The theme of my talk ‘Experiences of living with a long term medical condition’ in my case multiple sclerosis. The train braked I caught the train up to […]
ASCEND trial, week 72
Three quarters of the way there On Wednesday 22 Jan I had another infusion for the ASCEND trial, week 72, my 18th infusion of tysabri. Its a 96 week trial, so 24 weeks to go, 6 more infusions. Am I on a placebo? Nobody knows, this is because it is a double blinded trial. […]
The glass is half full
I don’t read many blogs, maybe I should. A couple of months ago I wrote an article for the blog Stumbling in Flats, its one of the only ones I regularly read. I took a decision and decided to write something for it and it has just been published, the title is I think the […]
Sunny day in Winter
As usually happens in January there have been endless days when the sky has a uniform greyness. Blue sky and sunshine are a rare sight; sometimes the sky is clear at sunrise but within an hour or so grey cloud is present from horizon to horizon. Dreary weather goes on and on If you are […]
MuSmate a walking aid for foot drop
I have foot drop in my left leg. When the problem started to be an issue I used the MuSmate a walking aid for foot drop. It stops me dragging my toes along the ground and tripping me up. Without the mechanical elastic device called a Musmate I could fall over very easily when walking. The […]
Do these help?
Being an MS sufferer is no joke, I should know. If you have MS there are so many items out there that can make your life easier. People seem to be so unaware of what is available. Here are some of my helpful tips to reduce the levels of stress in day-to-day life. Do these […]
A visit to the dentist and an overactive bladder
Too many multiple sclerosis sufferers have an overactive bladder. The chances are that you will have a prescription for ‘anti-cholinergic’ drugs. These drugs stop the bladder going into spasm and that’s a good thing. Sadly there is no such thing as a free dinner, these drugs have several side effects. I had a dental appointment and […]
My orthosis, 10 weeks later
The first fitting for my ankle-foot orthosis was in late September 2014, here is the post. Now its mid December. As we all know receiving something is one thing but only too often further work is necessary. This proved to be no exception. I was so pleased when I first started using it, walking was so […]
Feels like I’ve been mugged
Have you ever felt like you have lost a day? It feels like jet-lag, losing contact with time. No I was not hit over the head, nor have I flown to Hong Kong. Much more boring than that, I have had another taste of Uhthoff’s phenomenon. I’ve talked about it in the past but I’m […]
Disabled Toilet Radar Key
I travel up to London via Euston Station quite often, when I get there I often need to go to the loo or else I might get ‘caught short’. A Radar Toilet Key is needed to get into the disabled toilets. It is time get a disabled toilet radar key. Used to go to the public loos […]
Another Rant, this time Arriva buses
On Tuesday 1st October I had to catch a bus from Aylesbury to Berkhamsted. Arriva buses operate this service, the 500 bus. As I was about to get on the 17.25 bus the driver said that he would not allow me on because there was no space for my mobility scooter. I was told to […]
My New Orthosis
I recently visited Amersham hospital and had a new orthosis fitted, it stops foot drop. Strictly speaking its called an orthotic. By preventing foot drop my knee hyperextension will also stop. That is the theory. and even more interesting, the theory works. Better balance Yes, it makes walking easier and I am sure it does […]
Diagnosis, what next?
You have been diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), this happened to me in 1995. How many of you have been offered a disease modifying therapy (DMT) and when were you diagnosed? You try disguising a fall When I was diagnosed with MS I was not offered any treatment because none was available. I […]
MS Clinics, reducing missed appointments
South Devon Health Care tested a scheme at Newton Abbot Community Hospital for multiple sclerosis patients. Normally the patients would have to attend a clinic at Torbay hospital, approximately 10 miles away. The trial scheme to give people with MS access to services at Newton Abbot Community Hospital has resulted in fewer missed appointments. Specialist […]
Hemel Hempstead Water Gardens & Ashridge Estate
I am a part of a group of people with disabilities, this includes deafness, blindness and mobility issues. We make occasional trips to places of interest and assess them for accessibility. We visit locations in and around Hemel Hempstead. This time it was a visit to the Water Gardens at Hemel Hempstead and Ashridge Estate. […]
48 weeks, half way there
I have been on the ASCEND trial for 48 weeks, half way through, so that’s another 12 more infusions. Could Biogen Idec have a treatment for secondary progressive multiple sclerosis (SPMS)? I have spent the last two days up at the Royal London hospital having tests.Yesterday (Monday) was taken up with assessing my EDSS […]
Update on my Foot Drop
Sixteen months ago I wrote about the Musmate, it helps me to walk so much further because it lifts my foot off the ground. I still have MS and inevitably my walking ability has deteriorated albeit very slowly. At least the problem remains in my left leg, my right leg is still very reliable, phew! […]
Staring Into Space
‘Hey you, stop staring into space’. How many times did the teacher at school say that? Your imagination was away in the clouds and you had switched-off completely. When the moment came you could always switch-on again and be back to a fully functioning person Now you lose the plot Now when you catch yourself […]
Multiple Sclerosis is a Form of Dementia
Professor Giavannoni has put the cat amongst the pigeons by saying that MS is a form of dementia. The definition of dementia is Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss […]
Stuck in the middle – a press release
This press release tells the story of a disabled person (me) going to an MS Society meeting at Hatfield house but the station is not step free. Their handouts gave directions from the railway station. This scenario is difficult to believe in the 21st century. MS sufferer stuck on train platform when trying to attend […]
She’s gone
My ability to get up and go, where has it gone? That’s something I used to take for granted. There is something I used tol take for granted – it is something called balance. The loss of it has a profound affect on everything I do. Do you know that walking is 80% balance? So […]
Buy a stick, lose a stick and find a stick
I’m hopeless, I admit it. I scatter my possessions here, there and everywhere. I don’t know how many times Barby has sat me down and said that I must sop stop forgetting things. I must check that I always have my possessions with me. I agree, I need to learn how to remember things. I […]
