Living With MS
Life in a MS houeshold
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 […]
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 […]
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 […]
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 […]
Can the elephant stay out of the room
In February 2017 I wrote a blog about getting Botox injections for my bladder. Looking back it makes an enormous difference to my life. It changed, totally changed. Suddenly I did not have to worry about finding the loo or embarrassing myself. It was as if an enormous elephant had left the room. Describe it […]
Does my disability make me worth less?
So Christmas is done and dusted for another year. Decorations have been taken down and put in the loft. The Boy Scouts have collected the tree and recycled it. We’ve even managed to empty the fridge. Now wouldn’t it be lovely if I could just pack up my MS and store that in the loft […]
Three weeks of taking Fampridine
Friday, 22 December, I think that date will be etched on my memory for many years. Three weeks of taking Fampridine. I knew it’d helped me but the icy test was going to be measuring my new walking speed. Had Fampridine increased my walking speed enough for me to receive it on prescription? Three weeks […]
My MS clock has gone back a couple of years
I started taking Fampridine just over a couple of weeks ago. Yes, YEs, YES it really has worked. Right now I’m not too sure if my walking speed has increased sufficiently to receive the drug beyond the trial period. That it will be a bummer. Put walking speed to one side then so many other […]
Will Fampridine improve my quality of life
The physiotherapists at Queens Square neurological hospital offered me Fampridine in the summer of 2017. I knew that Fampridine also known as Fampyra could improve my walking speed. Sadly it doesn’t make the process any safer. None the less I reckoned it was worth trying out. Will Fampridine improve my quality of life When I […]
Just another little fall
In the kitchen I must use a stool on wheels. The Wife and I were cooking supper last Sunday and everything was getting a bit fraught. Not enough pairs of hands to prepare everything. I moved forward on my stool but a wheel got stuck in the grouting between two floor tiles. The stool stopped […]
Nobody mentioned grab rails
I guess a few of you who are reading this have got that irritating little disease, multiple sclerosis. It’s the way it advances. Step by step it creeps up on you. It’s funny how something that wasn’t a problem changes and becomes a problem. Even worse, suddenly its an ‘in your face’ problem. We had […]
Disabled access is not a tick box exercise
Access and facilities for physically disabled people are needed today and why ever not? It would be so unreasonable in this day and age to exclude the physically disabled from our activities. From my experience disabled access is turning into a tick box exercise. Remember disabled access is not a tick box exercise. Disabled access […]
Paying people who receive benefits
I recently attended a one day seminar on ‘paying people who receive benefits’. Typically these people are service users. How can I condense an intense six hour seminar into 500 words? Not easy, so here are a few important points. Paying people who receive benefits is not straight forward. The rules are complex. Also the […]
MS society walk
On Sunday, 24 September I went to Battersea Park in London to take part in the MS society walk. I left the house at a 8:45, caught the train to Euston and arrived at the start just after 11. I had hoped to be there earlier. Getting to Battersea Park from Euston station by public […]
Every morning I have to stretch my stiff muscles
Imagine getting straight out of bed and immediately walking into the bathroom, Haha those were the days and I can still remember them; must have stopped about 2012. Nowadays I have to start my day differently, I must stretch my stiff muscles. Multiple sclerosis is the culprit. What did I do in my sleep? Last […]
Life before diagnosis of multiple sclerosis
I was diagnosed with multiple sclerosis in 1995 but my journey started much earlier. In 1972, only 18, I was in the pub having some beers with a couple of friends. Suddenly I had the urge to go to the loo but when I went nothing happened. I didn’t think anything of it at the […]
Can I walk at least six kilometres
On 24th September 2017 the MS Society is organising a sponsored walk called ‘Together we walk’. On their website they state ‘This September hundreds of MS Superstars, our friends and families, will join forces in London to take in the sights and raise funds to stop MS. Will you join us?’ Can I walk at […]
Capability for Work questionnaire
Every once in a while the postman delivers a letter and I think ‘Uh oh this could be trouble’. On the front of this letter in big black letters I was told ‘IMPORTANT INFORMATION THIS IS NOT A CIRCULAR’ and it was ‘PRIVATE & CONFIDENTIAL’. The really important clue was the sender, printed on the back […]
Think about the positives
Too many people with progressive MS suffer in the heat, I know I do. I’m not naturally lazy quite simply I am clobbered by the heat. The energy just drains out of my body and worse if its humid as well. Two hot days and already I’m apprehensive of the summer. I must remember to […]
Stumble fall crunch and wallop
Monday evening We had finished watching episode 5 of Line of Duty. No spoilers I promise. Program finished and we were done. All that was left was to clear up the room and toddle off to bed. The Wife had taken the glasses through to the kitchen. All I had to do was switch off […]
Another sponsored walk
Well it’s another year and I am starting to think about one of my annual challenges. I like to have challenges. They have to be achievable and put me outside of my comfort zone. So time for another sponsored walk. The right distance In 2015 I had tried to walk a mile with my rollator […]
Another milestone in the inevitable progression of my MS
Something has definitely changed in the last few weeks. It was not an ‘Oh my God’ moment as in a flash of inspiration. Instead it was an ‘Oh my God’ realisation and it took a few weeks for me to understand. Let’s call it another milestone in the inevitable progression of my MS. Life moves […]
Feeling of being flattened by a steamroller
Do you remember a blog I wrote a month ago? The Department of Work and Pensions (DWP) summoned me to an interview. I arrived at the appointed hour and came out 30 minutes later feeling as if I had been mauled by an angry lion or flattened by a steam roller. This will definitely not rank […]
DWP invite me to a meeting, The Department for Work and Pensions
The postman delivered a buff brown envelope on the 7th Feb. The Wife gave it to me. The return address was DWP, PO Box 585, Belfast. Straightaway I said, “Oh this is something about my disability allowance”. Instead the DWP invite me to a meeting, much more sinister. The basic gist was as follows The […]
Sometimes I want a bit of stress
We can all recall moments when stress has got the better of us. Moments of bad stress might include road rage, trolley rage, package rage and even computer rage. All caused by heightened anger or frustration. Sometimes I want a bit of stress. Sometimes I want a bit of stress Stress like this lasts for […]
Is liberation and freedom just a Botox away?
On Wednesday 1st Feb I went to Queens Square to receive Botulinium Toxin or Botox injections into my bladder. I had wanted the injections for over two years. Life with a badly behaved as well as irritable bladder is no joke. I had learnt a lot of techniques to make life with this handicap easier. […]
What would I like returned to me by Multiple Sclerosis?
What would I like returned to me by Multiple Sclerosis? I’m talking about basic abilities, ones I have lost for ever. The list is far too long to bore you. In my dreams there is only I would like back. I’m sure it’s something lots of people take for granted. Right now I am really […]
Who knows where the time goes?
Back in the day I used to get up just after 7, help my wife get the children up, have breakfast and be at work by 9. Nowadays I get up by 8.30 and I’m not downstairs eating breakfast until 9.30. That was all 20 years ago Who knows where the time goes? It’s not […]
I wake up every night to visit the lavatory
I saw my MS consultant for the annual visit in November 2016. He asked me if there were any changes since my last visit to the clinic. I said to him “Now I wake up every night to visit the lavatory and have a tiny pee”‘ I wake up every night to have a pee […]
Every morning its four sticky FES electrodes
Every morning its four sticky FES electrodes. I must put them on my left leg. Two go onto my thigh and two go just below the knee. I started using the FES two years ago in December 2014. I estimate that I have taken the sticky electrodes off about 720 times and put them back […]
Going away for a short break
Going away for a short break used to be so easy. The hardest part was deciding where to go. The wife and I would finally agree on a place. From then on it was a simple process. Throw a few clothes into a suitcase, grab a book, car keys, wallet and the cheque book and […]
WorldvsMS challenge and The Amsterdam HACK
The WordvsMS campaign is an initiative that had been setup to give a voice to people with Multiple Sclerosis. The campaign has asked people with MS to list their challenges in everyday life. Three challenges were accepted from 103 that were submitted A weekend in mid-November was selected when groups of people were invited to […]
Finally I think progress is being made
A couple of weeks ago I wrote a post expressing my frustration with trying to get Botox treatment for my bladder. If you missed the post and would like to read it then please click HERE. Yes, I was unbelievably frustrated. Overnight the hospital had shunted my appointment from the next day to March next […]
Man still needs Botox for his bladder
I need Botox injections to control my bladder spasticity. This issue has been rocking around my locker for more than a couple of years. I have written about these problems far too often. You must be bored with them. Even I admit this subject does not come top of my reading list. Well read on, […]
Going back to Pilates
I have missed my last four Pilates’ sessions. They are on a Friday morning but I have been away. Going back to Pilates was a bit like going back to school after the Easter or Christmas break. Going back to Pilates Don’t get me wrong I enjoy Pilates. It helps me with the biggest problems […]
I use incontinence pads
Oooo, this is a difficult subject It is something I had to man-up to quite seriously several years ago. I have had bladder problems since I was a young man, multiple sclerosis has a lot to answer for 🙁 Nowadays I sometimes use incontinence pads because of the irritable bladder. I only wear normal underwear […]
Its when the unexpected happens
Its when the unexpected accident happens. Inevitably I get stressed and this feeling lasts for a couple of hours. When I am feeling fragile it does not take much to tip me over the edge. Most of the time I’m as tough as old boots. Its when the unexpected happens The problem is the MS. My memory and sense […]
MS Society MSLIFE2016 Exhibition
Over the weekend 17/18 September the MS Society held its biennial exhibition, The MS Society MSLIFE2016 Exhibition MS Society MSLIFE2016 Exhibition I went there on the first day and arrived at about 12.30. There was expectation and excitement from the moment I walked into the exhibition as well as a noisy atmosphere. During the day I […]
Do my morning exercises
As little as ten years ago I would wake up and get out of bed without a thought. Such bliss, such joy. Now when I wake up I always feel horribly stiff. It’s a huge effort to turn over onto my back so I can swing my legs out of bed and sit on the […]
Time To Make Your Life Easier
Do you have MS? Don’t you think its time to make your life easier? I should know, I am always trying do it. What can YOU do so you do not feel fatigued living your life? Its important to enjoy yourself and have a good quality of life. Time to make your life easier I’m […]
Sticky electrodes and my FES
I started using a Functional Electrical Stimulation (FES) in January 2014. It has been my game changer. Without the sticky electrodes and my FES I would probably have to use a wheelchair around the house. Hold on a moment, I would definitely have to use a wheelchair. Instead I have a different life. Sticky electrodes and my […]
I had a wonderful sailing holiday
I had a wonderful sailing holiday Earlier this year in 2016 I had a wonderful sailing holiday. Click HERE to read about it. I signed up to go sailing with the JST (Jubilee Sailing Trust) on the Lord Nelson. It was a six day trip from Southampton to France and back to Southampton. Help me […]
An invisible physical disability
Are you like me? I suffer from an invisible physical disability. Do these statements sound familiar? “Crikey I didn’t know you were disabled”. Or maybe someone said “You don’t look disabled”. Sometimes it’s even “You look healthy”, and then they deserve a slap. An invisible physical disability Millions of us in Briton have a hidden disability. […]
My Badly Behaved Bladder
Sometimes you just want your MS problems to go away. I know the severity is different for everyone but there are times when the niggles just get to be too much. My badly behaved bladder has been around for over 35 years. Slightly longer than I have been married. My badly behaved bladder Its not […]
Some things I simply do not see
Vision is a bit of a mystery to me at times. Some things I can see perfectly well and some things I simply do not see. I know my vision is not 20/20 🙁 I always have to wear a pair of glasses, I even have special reading glasses. Some things I simply do not […]
The FES has been a life changer
An FES was originally fitted over 18 months ago to help my footdrop. There is no doubt the FES has been a life changer. It makes me feel more confident, I have better balance and a definite ‘I-can-do’ feeling. OK so I still need to use a rollator. The FES has been a life changer At […]
I cannot do things I once took for granted
Everyone knows Multiple sclerosis is a horrible disease. Now I cannot do things I once took for granted, its the Multiple Sclerosis. Its taken a long time but I thinks it has finally got me. I get so frustrated. I cannot do things I once took for granted Am I wrong? I don’t think so. […]
Visit The Shoulder Consultant Again
I had an operation to repair the rotator cuff in my left shoulder in August 2014. There is still an occasional twinge in my left shoulder. Shortly after the operation, the consultant said he could do a hip replacement in less time than it took to repair my shoulder. Only then did I realise it […]
Something prevents a good sleep
It all started in the middle of last year, 2015, I had an appointment to see a urology consultant. I was having problems with leaking urine before I inserted a catheter to have a pee. Only very very occasionally was there a total disaster. Accidents do happen and very occasionally I have to change my […]
The FES Really Changed My Life
The FES really changed my life. I am quite sure it was the Functional Electrical Stimulator otherwise known as an FES. Originally fitted in December 2014. I immediately stopped falling over with monotonous regularity. Instead I stayed upright, it changed my life for the better . So many people commented that I looked better and […]
Heads MS Wins or Tails I Lose
Heads MS wins or tails I lose. Its all on the toss of a coin? Life is unfair. Running, driving, dog walking, employment are just a few things my friend MS has won from me. It is exerting such a strong grip on my life. Nowadays I run out of energy more quickly than ever 🙁 […]
Can You Cure Multiple Sclerosis
Can you cure multiple sclerosis (MS)? It is a question that would always receive a negative reply. Recent medical developments, described as miraculous, can now lead to a cure for MS. People newly diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) can have their immune system rebooted using stem cells extracted from their bone marrow. Before […]
The Highwayman in Berkhamsted
The Highwayman in Berkhamsted used to be a Blanc Brasserie restaurant, it catered for people who use a wheelchair admirably. There was a good disabled loo at pavement level. The dining area is over half a dozen steps lower than the entrance but there was a lift for wheelchair users to get to the dining […]
Life without a FES would be unthinkable
I have SPMS and seriously disabled with foot drop. I was fitted with a Functional Electrical Stimulator (FES) in December 2014. A consultant from Queens Square, London suggested that it would help my walking. At first I found it very fiddly to setup and this did not inspire me with confidence. Within a few days […]
Swimming is proper exercise
At hydrotherapy I had unexpectedly found myself swimming doggy paddle. Suddenly I realise swimming is proper exercise. There is no fear of falling over. It uses so many muscles. It is healthy exercise and no fear of falling over, call it a water workout. Feeling exhilarated by the thought of swimming a few strokes I […]
Repairing my rotator cuff
Repairing my rotator cuff was my operation in August 2014. Its now December 2015, that was more than 15 months ago. My shoulder now has a full range of movement but no strength when lifting my arm up to the horizontal position. I assumed this would to be my misfortune for the rest of my […]
Were There Any Benefits Doing The MS Mile?
Were the any benefits walking the MS mile? Definitely! On the 9th September I walked the MS mile. Definitely YES 🙂 I raised just over £ 1,700 for the Chilterns MS Therapy Centre I proved to myself I could walk three quarters of a mile even with a rollator :-)) Taking exercise on a regular basis, […]
Now Its My Turn To Walk the MS Mile
After several weeks of training the big day arrived. 12 September, now it’s my turn to walk the MS Mile. Getting there My training was walking 100 yard lengths with my Rollator. I felt huge benefits from the exercise, I feel more positive and my balance is now so much better. I am now walking distances […]
Walk the MS Mile. Video, Good Exercise For Me
Good exercise is something we all need to do. It gets those muscles working and it also makes me feel a whole lot better in mind and body. Since I signed up for the ‘Walk the MS Mile’ for the Chilterns MS Centre I have gone out nearly every day with my rollator pushing myself […]
A Short Video – Me and My SPMS
Below is a short video of me taken recently after a networking meeting. To watch the video click on the picture I know full well that after a diagnosis of MS you may well feel shell shocked, devastated, depressed or even as if the world around you has collapsed. Despite the diagnosis MS […]
At Night I Can’t Just Fall Into Bed
It’s the evening, I’m tired and its bedtime but at night I can’t just fall into bed. I have to go through a ritual every evening before I can get into bed and start reading my book. Getting undressed and removing my FES is quite a palaver. If I do this standing up I’m guaranteed to […]
Training for ‘Walk the MS Mile’
I’m now training every evening. Getting fitter so I can walk the ‘MS Mile’. Training time Every evening at about 5 o’clock I’m out training, doing a walk with my rollator. I increase the distance every few days. D Day is Saturday 12 September and takeoff is at 11.00 outside M & S in Berkhamsted […]
Walk the MS Mile 2015
On 12 September 2015 I will be walking 1,760 yards or 1 mile, to help the Chilterns MS Centre celebrate its 30th birthday. The Challenge Maybe you don’t think that is very far; for me it is one heck of a challenge. I have always liked a challenge, I’m definitely up for this one. The […]
Drop Foot And The FES
It’s now August 2015, time to think about my drop foot and the FES ; I have been using a Functional Electrical Stimulation (FES) to help me walk since December 2014 that is 9 months. It is a dual channel FES. I cannot lift the toes or front of my left foot off the ground. I cannot […]
Good Days and Bad Days
Its only started over the last few days. It’s a return to the old times of good days and bad days. What’s happened? I am still just as busy. I am still doing things that I enjoy. Some of the things I do even earn me a bit if money. One small thing has changed […]
Do Hospital Gardens Aid Recovery?
Hospital gardens can help patients with recovery. They will spend less time in hospital. A garden provides access to active exercise and can instill a desire to live My experience in 2009 I was working in Hamburg when I fell over, cracked two ribs and punctured a lung. After the operation to insert a tube to […]
A Very Wet Phone and 5 Rules to Dry it
Does your mobile phone float? Mine fell into the loo. I had a very wet phone. A very wet phone and 5 rules to dry it. Let’s start at the beginning I’m a bloke and I keep my phone in the breast pocket of my shirt. If I bend over at the waist I will fall […]
Its taken a long time to get going again
It’s took me a long time, a whole week to get going again after a short holiday. Here’s why. First excuse is Portugal Barby and I went to stay with University friends of mine. They have a house in the mountains near Monchique, Portugal behind the Algarve coast. Here are some of the memories: Freshly […]
Feeling Frustrated, Lost my Temper
MS is a personal disease, different for everyone. No matter how much you try to explain only an MSer can truly appreciate it. There are subtle changes to the mental state of mind. Claustrophobia, clumsiness, feeling frustrated and even stupidity can occur. The physical situation will invariably deteriorate during the day. Sometimes it all gets […]
Two channel FES
I was fitted with a single channel Functional Electrical Stimulator (FES) in mid December. Sixteen weeks later, at the end of March I was upgraded to a Two Channel FES. The original FES is only able to stimulate one muscle; the new one can stimulate two muscles. The original FES stimulates the muscle to lift the front of the foot. […]
Memory is definitely getting
The Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis (CRAMMS) study will focus on these MS related symptoms and begin to recruit patients in April 2015. I already know that I have a very poor memory. What do I use to help my memory and make my life with multiple sclerosis that little bit easier? The […]
Caffeine is the world’s most widely consumed drug
Caffeine is the world’s most widely consumed drug. It changes brain function and results in alterations in perception, mood or consciousness. Unlike many other psychoactive substances it is legal. If you have MS and an unreliable bladder then caffeine is definitely bad news. I love a cup or two of coffee in the morning but there is a price […]
Berkhamsted station is step-free
At long last the lifts at Berkhamsted station are working. It is a step free station.. The lifts were opened to the public on Friday 13 March. It has been an awfully long wait. They started the building work in early 2014 and it was finished by January 2015. People had been seen going up and […]
The inevitable progress
Doing simple things thing seems to leave me feeling exhausted and no physical energy. Hole in my energy tank Why do I leak energy so easily? Any little job leaves me wanting to sit down Not only is it so tiring doing anything remotely active and now it takes me so much longer. I hear […]
The positives from MS
I was going to give this article the title of “What has MS stopped me doing?”. I don’t like that because it is so negative and basically I am a glass half full man so lets make this a positive post. Positive things What good things have happened to me over the last few years? […]
An unwanted visitor
It all started at the back of my throat. It was just a tiny tickle at lunchtime. I honestly thought it was my imagination. It had gone away by the evening, hurray. Next morning, day two, it was a bit tricky to swallow but a couple of cups of tea sorted that one out. I […]
A terrible shock
Last week I discovered that our lovely shower was not working and the problem wasn’t just the shower. Book the engineer The story starts when the thermostat for our power shower broke so the shower water was only freezing cold. I phoned Aqualisa to book an engineer. I pulled the disability card and was told […]
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 […]
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. […]
