Living With MS
Life in a MS houeshold
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 […]
Hyperbaric Oxygen Therapy
What is hyperbaric oxygen (HBO) therapy? It is treatment when a patient breathes in pure oxygen while under increased air pressure. This increases the oxygen content in the blood and consequently in different body tissues. Medical conditions such as burns, decompression sickness or the bends, severe infections, radiation-induced tissue injury, and carbon monoxide poisoning can use […]
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 […]
Brenda Escreet & her ‘Harley Davidson’ TGA Mobility Scooter
Despite living with Multiple Sclerosis, Brenda Escreet, 66 from Lancashire continues to attend numerous music festivals and gigs, support several charities and have ‘biking’ freedom outdoors thanks to her TGA Supersport mobility scooter. Disabled Ramblers Brenda was originally born in Lancashire and after a period living in London now lives back in her native county. […]
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 […]
You’ve Been Diagnosed with Multiple Sclerosis
Here are six words you do not want to hear. Did you tick the box on the mortgage application form for life cover? I didn’t. Its too late now to insure your health, so you’ve just got to shrug your shoulders. Its even more important to plan for the future. Yup, the phrase, ‘You’ve been […]
Oh dear, not again
Oh dear, not again. I lose my reading reading glasses. It was going to be a long day An early start means catching a train at into London at about eight in the morning and arrive back home at about six. As well as the infusion a batch of tests to include various timed walks, […]
Bonkers daughter
One of my daughters enjoys a challenge. Its the same attitude that mountaineers have to mountains, they only climb them because they are there. She and a group of friends are going to cycle the length of Britain, Lands End to John O’Groats to raise money for charity. The distance they cycle will be 1000 […]
Manage Your Life and Depression
It’s not an easy task to manage your life and depression. It’s even worse if you have a progressive illness. Your life and your capabilities are being nibbled away bit by bit. It is no wonder that you feel sad and dejected maybe even rejected. Depression is curable Oh yes these are strong words but […]
Always Be Able To Ask For Help
With my MS one thing that is essential. I am always able to ask for help. I run out of steam Only too often I used to start a job such as cooking supper or mowing the lawn and half way through I would find I had run out of energy. I needed some else […]
Make time for exercise
I think that you should always ensure there is enough time each day to take exercise. Feel healthier Exercise helps to create a healthier body and to keep a healthy mind. Research shows that exercise helps to ease the symptoms of MS. Find the exercises that suit you and can be a part of your […]
Multiple sclerosis and stress
Multiple sclerosis and stress, a bit like night following day Stress, a definition We think the demands being placed on us exceed our ability to cope. MS and stress If you have MS then stress is likely to be a constant companion. Its usually just hovering out of sight and gets you just when your […]
A Healthy Life
Everyone says how important it is to stay healthy. Do I hear you say ‘How can I be healthy when I’ve got a disability?’ Disabled does not mean unhealthy As a general rule, if you lead a healthy life then you are looking after yourself and your disability at the same time. Here are some […]
Pace your life
If you have multiple sclerosis then you must learn to pace your life. What does this mean? Initial ideas Be calm and be steady Learn to relax Always think before saying ‘Yes, I will be there” or “Yes, I will do …” Never be frightened to say “No, I’m too busy” or “OK, but lets […]
Always use the right tool for the job
It is vital that you always use right tool for the job. In my case I must find aids that help to keep me safe. The first thing to do, unless you have done it already, work out what causes you the biggest problem. Now concentrate on how to find solutions to the problem. Accidents […]
Plan B
Plan A & Plan B I nearly always plan out what I’m going to do, that’s plan A, then occasionally I think about plan B. Plan A & Plan B What to do in an emergency, its obvious but surprising how often I forget about it. I get halfway through the day, sit down and […]
Managing Day to Day Life With Multiple Sclerosis
Managing day to day life with multiple sclerosis is a roller coaster ride. One day you feel fine, the next you feel like a wrinkled balloon. Sometmes its a mental issue other times its a physical problem. Sometimes its both. I have passed the Relapse Remission stage of multiple sclerosis. For me its evolved into Secondary […]
Week 24
I have been a bit lazy writing reports on the ASCEND trial, better later than never is all I can say. What stopped me? Actually it was finding something that was worth writing about. This takes a slightly different slant from the previous articles. Every four weeks I need to get out of bed at […]
