Living With MS
Life in a MS houeshold
Safe Return Of My Travelscoot
I am a member of Berkhamsted Speakers club, it meets on Tuesday evenings; I go to the meetings using my Travelscoot. After the the meeting had finished on Tuesday 9th June I went outside to ride it home but my Travelscoot was nowhere to be seen. It had disappeared. I looked again and it still […]
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 […]
Digging up weeds should be an easy job
Use a Fiskars Weed Puller and now digging up weeds should be an easy job. Lets be honest, bending down to dig up weeds is not enjoyable gardening. Now you can do it while standing up. This must be a better solution. Could it be called fun gardening? As we all know weeds just appear out of […]
Tale of two different rollators
A rollator is an aid that helps with walking. They help me with my balance and to walk upright. A rollator provides the support. It will have a seat to sit on when tired, brakes and a basket to carry items They are all lightweight, the frame is robust, the brakes can be adjusted and should […]
Glasses for Double Vision
It was double vision that led to my diagnosis of MS in 1994. Twenty years later double vision was turning into a serious problem. Prisms are included into the prescription and these are then glasses for double vision. The problem for me was that my double vision had reach the stage where prisms could not […]
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 […]
I Wear an Eye Patch Because I have Double Vision
I wear an Eye Patch because I have double vision. Double vision, led to my diagnosis of multiple sclerosis in 1994. Double vision did not become a serious problem for me until about 2012. I had double vision before then but prisms in my glasses were always able to eliminate the problem. The double vision can no […]
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 […]
Lucy Bee Extra Virgin Raw Organic Coconut Oil
Why am I reviewing Lucy Bee Extra Virgin Organic Coconut Oil. It has incredible properties and it is very healthy. It is extremely versatile. Coconut oil is a natural oil that will benefit the body in many ways. Coconut oil is made from the flesh of the coconut. Find out how it is made read this […]
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 […]
Toilet Frame with Adjustable Height and Width
There time may well come when a Toilet Frame with Adjustable Height and Width is very helpful when you need to sit down or get up from the loo. Be as independent as possible. This toilet frame is designed to give you that independence. It will make life just that little bit easier even if you […]
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 […]
