SPMS
Do you know I have smouldering MS
I have smouldering MS. Multiple sclerosis first struck in 1972 when I was only 18. My bladder let me down on several occasions in the next 10 years. I didn’t speak to anyone about this problem, young men do not like going to the doctor. Big mistake, but I doubt if anyone would have made […]
Paristeen is another morning routine
Peristeen is another morning routine. This was not a random decision, Peristeen is vital for bowel management and it is now an essential part of my life. I do have a good healthy relationship with my MS but living with it can be tricky and life never stays still. If you have never heard of […]
Advanced MS and sitting down exercises
Advanced MS and exercise are not natural bedfellows. None the less exercise can help us all to manage common MS symptoms such as fatigue, muscle spasms or balance. When I was a child my parents were always saying to me, “Go out side and take some exercise” and it was so easy. Those were happy […]
Only another invisible disability
An invisible disability is a problem for people living with advanced MS and you can easily have several. I could go so far as to call them as the lowest form of pond life. Something unexpected starts happening, initially its very slightly annoying and is quickly dismissed as a passing glitch. You hope the glitch […]
With MS I now move like a tortoise slow but steady
As I move forward through time, ticking off the years, multiple sclerosis has an ever growing impact upon my life. Nowadays I must always have one hand holding onto something firm and stable. The happy days of nipping upstairs or popping next door are history. Now everything must be carefully considered. I now move like […]
I am Patrick and I have advanced multiple sclerosis
I am Patrick and I have advanced multiple sclerosis; A physically active life is no longer possible, balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple sclerosis (MS). The beginning I am convinced my multiple sclerosis started in 1972, my […]
My last ten years with multiple sclerosis
In the last last ten years I have changed from a man in full-time employment to a man with very visible, full-on, multiple sclerosis. Until 2011 my multiple sclerosis was affecting me physically but my thinking and problem-solving skills were still good. Employment was always somewhere in Europe as a contract computer analyst programmer or […]
Multiple sclerosis and the double whammy
Multiple sclerosis has taken over my life very very slowly. That sounds so much better than ruining my life very very slowly. It all started in 1972 and remained in the shadows for thirty years. The disease is now grown up, it’s matured into SPMS. For every disability there is a consequence. I call this […]
Hidden disabilities of my MS
My MS diagnosis was 25 years ago. Little relapses were always followed by a remission. I was working and leading a perfectly normal life or so it seemed to an outsider. In 2000 my remissions stopped. The anxiety, bladder and walking problems of MS became permanent and they also slowly got worse and worse. An […]
A progressive disease is one that gets worse
A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences? Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis? I […]
Multiple sclerosis has its lesions and inflammation
Just when you think there is a glimmer of hope, a tiny twinkle of light at the end of the tunnel, it is surprising how easily that little spark of optimism can be extinguished. Life with nearly every single Long Term Condition can be really rough. Multiple sclerosis has its lesions and inflammation. This causes the […]
#ThinkHand Campaign for Advanced Multiple Sclerosis
I attended the launch of the #ThinkHand campaign for advanced multiple sclerosis by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February. I have advanced MS and this is a big step in the right direction. My multiple sclerosis I can still walk, but it is a very slow walk and […]
Progressive multiple sclerosis treatment
Options for progressive multiple sclerosis treatment are non-existent. If you have recently been diagnosed with MS then there are treatments available to reduce and even stop progression. That is fantastic news but it is too late for so many people. I am one of those people If you have progressive MS then the outlook is […]
48 weeks so I am almost half way there
I started the MS–SMART trial on January 7th 2016 and I take the MS-SMART pill twice a day. Its now 48 weeks so I am almost half way there. This two year trial is looking at 3 different drugs to find out if there is some neuroprotection in any of them. 48 weeks so I […]
Why multiple sclerosis makes me anxious
Multiple sclerosis is a scary disease. It’s progressive and unpredictable. As it progresses you become less capable of undertaking physical activities. You are very aware of its progress. It is no great surprise that sufferers are apprehensive of what the future holds for them. This uncertainty is often the cause of stress and anxiety. Why […]
Keeping the grey matter active
I hope that this is a bit of a fun. How many times have you had to do something that’s looked easy? Then you realise that you need to think quite hard. Its called concentration or keeping the grey matter active :-0). Its called the Stroop effect Picture 1 […]
MS-SMART and Anti-LINGO-1
At long last drugs are being tested to help slow down progression of SPMS. There are two trials in Phase 2 of the testing cycle. There is a good possibility something positive will be the result. The MS-SMART and Anti-LINGO-1 trials represent a real hope for us sufferers of SPMS. Each trial is evaluating how […]
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 […]
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 […]
Second infusion
Today I went the Royal London hospital and had my second infusion. There was not a lot to report since my first infusion. I have not noticed any difference in the last 4 weeks except that my double vision has got worse. This time there was just one test. I was shown a list of […]
First Infusion 4th September
The infusions are to done monthly and the first one must be within 6 weeks of being accepted for the trial. I was accepted on 26th July. The first infusion It was set for Tuesday 4th September, cutting it a bit fine, but hey-ho I made it. I was told the first day would be […]
Ascend Trial, the screening
MS is a progressive autoimmune disease and so far no cure has been found. It is devastating; you just gradually lose the ability to control part or parts of your body. Ascend trial, the screening My left leg has no strength. generally speaking from the wast down I’m a bit of a disaster. At least […]
