Living With MS
Life in a MS houeshold
Inactivity kills more than obesity
Be active, it really is good for you even if you are grossly overweight. Obesity Not taking enough exercise is more likely to kill you than obesity BUT obesity in children is linked with an increased risk of MS and other autoimmune diseases such as Crohn’s Disease. Inactivity Believe it or not you do not need to […]
FES, 4 weeks later
I was fitted with a Functional Electric Stimulator (FES) in December 2014. No expectations FES has changed my life but not in ways that I was expecting. Actually I did not really have any expectations. I had not done any research into it; at times I’m so idle. I was only getting one fitted because […]
Quality of Life
Call it the general well-being of an individual. Quality of life is a barometer of the mind How much do you enjoy each day? Do you have a reason to get up in the mornings? Do you look forward to tomorrow or do you wonder how you are going to get through these moments? My […]
Walking is 28% Faster with an FES
This is a big question. Can I walk faster with an FES or Functional Electrical Stimulator? How can an FES help me to walk faster? Will it help me? In my previous post about FES I explained how this gadget should help me with my walking. My second visit to the National Hospital for Neurology […]
FES (Functional Electrical Stimulation)
I have foot drop and it has got progressively worse over the last 10 years. FES my new walking aid Foot drop is a paralysis or muscular weakness that makes it very difficult to lift the front part of your foot and toes. It can also be called drop foot. It can cause you to drag your […]
Shoulder surgery
I have made several references to my shoulder operation but not explained it to you in detail. The operation was to mend the rotator cuff I needed to stabilize my shoulder after I dislocated it at the end of February 2014. I did a sort of Dellboy imitation and crashed into a radiator not that […]
Week 108
As I said in my previous post for week 104 I am finishing the ASCEND trial. 2 October 2014 is my last visit to the clinical research center. Why did I stop I could continue and definitely receive Tysabri (natalizimubab) but the risk of my getting PML is too high for me to continue. This is […]
Sometimes I Feel So Fragile
Occasionally I do feel frail or delicate. Most of the time I’m as tough as old boots. Emotional stability When I feel fragile it does not take much to tip me over the edge. I can suddenly change from a robust healthy specimen to someone who is crying; yes I do cry and want a […]
Visiting Wales
I am visiting Wales, Penarth to be precise. Meanwhile Barby is on a walking break, 5 days of respite. She is on her annual pilgrimage to the Lake District so more Wainwrights can be crossed off the list, notably Skiddaw. Home alone? With one arm in a sling it is impossible for me to put on […]
Catheters for Intermittant Self-Catheterisation
I have used catheters for intermittant self cathetetisation since 2006 and used Coloplast for many years. Coloplast catheters I started by using the Coloplast 14 inch catheter; this was fine for use in the house but potentially embarrassing when out and about. At work, for example, how do you carry something into a loo that […]
Exciting news
I got up at 6.45 in the morning on Thursday 7th August. I had to go up to London, another infusion for the ASCEND trial; week 100. Almost eight hours later I walked back into the house. Autopilot The first thing, even before a cup of tea I always check my emails and there was […]
Traveljohn disposable urine bottle
Imagine you are desperate to have a ‘Jimmy Riddle’ (widdle) or pass urine and there is nowhere to go. The TravelJohn Disposable Urine bottle does the trick when you gotta have a pee. It avoids the problem when you might wet your pants. It can be used by both men and women. Incidentally the Traveljohn disposable urine […]
Should I Have Suprapubic Catheter
A friend has been urging me to stop intermittent self-catheterisation (ISC) and use a suprapubic catheter. Her argument being that it is not a good idea to be inserting a catheter into your bladder several times a day. She is worried about infections and damage to the bladder. She says everything is more stable and less […]
Week 96
Slowly but surely the weeks trickle by. Only another 12 weeks until the trial finally finishes. That’s another 3 visits to the Royal London Hospital. Even at this stage I don’t know if I’m receiving the real deal or a placebo. It is a random double blind trial. I suspect that I am receiving the […]
Stuck In My Throat
From a medical point of view the year 2014 has not been great. Too big to swallow Here is another incident, it started on Thursday 3rd July at 6.30 pm. Eating a meal before going to see a show at the Young Vic I tried to swallow a piece of lamb that was too big […]
Story of a Urinary Tract Infection (UTI)
Here is a diary of a sorry story that happened to me. This sequence of events in 2014 because of problems inserting a catheter and could easily happen to any person with multiple sclerosis who does intermittent self-catheterisation. A brief summary of the events over the last 3 weeks I was an emergency admission to […]
My MS Fatigue, What Is It Like?
Fatigue is a common symptom of advanced multiple sclerosis. It does vary tremendously from person to person. Multiple sclerosis is not understood by far too many people. Find out more about my MS fatigue. How does my MS fatigue affect me? My MS fatigue, what is it like? An overwhelming inability to continue but there […]
Falls, what can I do?
Falls are a surprisingly common event for people suffering from a progressive illness. I have extremely bad balance foot drop in my left leg. The question is quite simple, ‘What can I do to reduce the chances of having a fall?’ I’m constantly improving my strategy in an attempt to stay on my feet and […]
Are You a Frequent Faller? I Am.
Only too often people with SPMS are described as frequent fallers; I am. There are usually only a couple of reasons but you ignore them at your own peril. Drop foot I have a leg that does not do what it is told, sometimes known as drop foot. I’m unable to lift my left […]
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 […]
Multiple Sclerosis and Tai Chi
Tai Chi is a Chinese martial art. Shibashi, a form of Tai Chi, are 18 simple exercises that are easy to learn Recently I attended a physiotherapy session at the MS Therapy Centre at Halton where I was introduced to the Shibashi exercise routines. Multiple Sclerosis and Tai Chi Shibashi are coordinated movements performed in a […]
The invisible disease
Multiple Sclerosis the invisible disease is now a part of my life. It first affected me in 1972 but who could say what it was when it first arrived and began to infect me. I had no idea that there was anything wrong with me. When I was younger I used to play rugby at […]
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 […]
