2017

Universal Holder For A Smartphone

Universal Holder For A Smartphone

Almost all of us are addicted to or owner of a smart phones I find the Google Maps utility very useful especially when going to places in London on The Trike. It is very easy to attach the Universal Holder for a Smartphone to a Travelscoot and now it is indispensable. Addicted, no, I just love some gadgets. […]

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Who am I

Who am I

I am Patrick and run this website and I was born in 1954. These days I have advanced multiple sclerosis; I try to lead as active a life as possible but balance and walking problems get in the way. Also I am not allowed to drive because of double vision, another kind gift from multiple […]

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The Website aid4disabled.com

The Website aid4disabled.com

There are numerous multiple sclerosis (MS) websites. There are those run by large organisations and there are ones like this one, run by one man and his dog. I hope this one is different and makes you curious. The main aims of the website Aid4disabled.com are to provide two different services. The two main functions […]

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Three weeks of taking Fampridine

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 […]

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7 comments

My MS clock has gone back a couple of years

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 […]

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8 comments

Will Fampridine improve my quality of life

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 […]

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11 comments

Dragon Dictation Software

Dragon Dictation Software

Over the last couple of years MS has stolen the dexterity from my fingers. Years ago I tried to teach myself touch typing with no success. My finger tips are numb, thanks MS, so I can’t feel the bar on the keyboard for the letters J and F. I struggled on, typing was horribly erratic […]

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10 comments

Getting the best from my life

Getting the best from my life

Enjoying life, it is the reason to get out of bed each morning. Okay I do have a few problems but hey who doesn’t? I’ve had multiple sclerosis for over two thirds of my life and now I’m medically retired. I’m still learning the art of getting the best from my life. The biggest game […]

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13 comments

Just another little fall

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 […]

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3 comments

Nobody mentioned grab rails

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 […]

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6 comments

MS-SMART drug trial after 92 weeks

MS-SMART drug trial after 92 weeks

Its almost 92 weeks since I started the MS-SMART drug trial. The time has flown by. The trial as been straight forward. Just pop a pill every morning and again in the evening. Well almost every evening, sometimes when I go out in the evening I forget to take one with me and when I get […]

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5 comments

Disabled access is not a tick box exercise

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 […]

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12 comments

Paying people who receive benefits

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 […]

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Toastmasters humorous table topics competition

Toastmasters humorous table topics competition

I have been a member of Toastmasters for several years. The first Toastmasters competition for me and I had reached the second round of the Toastmasters humorous table topics competition. Toastmasters humorous Table Topics competition Table topics, you either hate ‘em or love ‘em. Just make an impromptu unrehearsed speech on a random topic lasting […]

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MS society walk

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 […]

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8 comments

Expert by Experience

Expert by Experience

I have never liked the term ‘Service User’. Would I rather be called a ‘Client’ or a ‘Patient’? No I don’t like them either. I think the term ‘Co Worker’ is okay but not perfect. I do like the idea of Expert by Experience. It is a positive description. In the video just below I […]

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FCAROLYN silk eye patch

FCAROLYN silk eye patch

Double vision is possibly my biggest hidden disability. In April 2015 it reached a critical point. My optician could no longer correct the problem using prisms in my glasses. He came up with an ingenious solution that still I use today but it requires specific glasses frames. I recently discovered the FCAROLYN Silk Eye Patch […]

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Every morning I have to stretch my stiff muscles

Every morning I have to stretch my stiff muscles

Getting straight out of bed and immediately walking into the bathroom, don’t make me laugh :-). Every morning I have to stretch my stiff muscles. What did I do in my sleep? Was I racing Mo Farah last night or was it just a nightmare? Whatever it was, it has left my muscles scrunched up. An […]

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6 comments

Mobility scooter needs a bus permit

Mobility scooter needs a bus permit

In late July as I was getting onto a bus at High Wycombe the Arriva bus driver said “The mobility scooter needs a bus permit. Can I see it” Arriva are responsible for running all the buses in the towns close to where I live. I have to use the buses because double vision makes driving […]

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16 comments

Parallel London sponsored walk

Parallel London sponsored walk

I’ve just completed the 1 km Parallel London sponsored walk and raised over £1300. The walk was the easy bit. There was a place to start, I had my Rollator, the route was marked out and there was a finish. The journey to arrive was the nightmare. I set my alarm for 8 o’clock on Sunday […]

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8 comments

Two stories using my Travelscoot

Two stories using my Travelscoot

I have owned a TravelScoot since 2010. Here are two stories using my Travelscoot. Just in case you didn’t know the Travelscoot is the lightest mobility scooter, has a unique design and is practical in so many ways. Two stories using my Travelscoot It is known affectionately as The Trike. Everywhere I go The Trike […]

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16 comments

Progressive multiple sclerosis treatment

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 […]

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10 comments

Multiple sclerosis is a funny old disease

Multiple sclerosis is a funny old disease

Multiple sclerosis is a funny old disease. No it is definitely not funny ha ha. Trying to get my head around continual progression ain’t easy. There are always changes and it catches me out. I just get the hang of what’s happening then there is a bit more progression. Multiple sclerosis is a funny old […]

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9 comments

Life before diagnosis of multiple sclerosis

Life before diagnosis of multiple sclerosis

I was diagnosed with multiple sclerosis in 1995 but my journey started much earlier. In 1972 when I was nearly 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 […]

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Sometimes I cannot get out of first gear

Sometimes I cannot get out of first gear

We can all have good days and bad days. People with Multiple Sclerosis seem to have more bad days than good days. Just at the moment I’m not sleeping well. During the day sometimes I cannot get out of first gear. It is sooooo frustrating. It is an invisible symptom. Just at the moment I’m […]

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Help Patrick to walk one kilometre

Help Patrick to walk one kilometre

Can you walk 1000 metres? It’s not a big deal is it? You might think nothing of nipping upstairs to brush your teeth. What about putting the rubbish bins outside each week? Maybe you need to pop to the shop and buy some cheese. You might do a bit of sport or even go to […]

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Action packed couple of days in Barcelona

Action packed couple of days in Barcelona

I flew out to Barcelona for a couple of days. I took The Trike with me as one does.  No, I was not going on a holiday. It was for a meeting with RADAR-CNS. A research project wanting to develop ways to measure Long Term Conditions using wearable devices and smartphone technology. I was there as a […]

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Capability for Work questionnaire

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 […]

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Totally unrestricted and able to move easily

Totally unrestricted and able to move easily

There was a wonderful time when I had felt totally unrestricted and able to move easily. Even on the fateful day in 1995 when the consultant diagnosed me with multiple sclerosis I was just a normal guy. Multiple sclerosis, I had never heard of it. I had to look it up in an encyclopaedia and […]

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14 comments

Think about the positives

Think about the positives

Too many people with progressive MS suffer in the heat, I know I do. I’m not naturally lazy its just that 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 […]

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Penultimate visit for the MS SMART drug trial

Penultimate visit for the MS SMART drug trial

My penultimate visit for the MS SMART drug trial was always going to be a very short visit. Replace the old pills with a new set. These will then see me through for the final six months of the trial. I also give some blood, how I hate injections, I even have to shut my […]

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4 comments

The Wife and I flew to Barcelona from Luton airport

The Wife and I flew to Barcelona from Luton airport

When I am going on holiday I start at point A, have my holiday at point B then return to point A at the end of the holiday. In this case it was a five day city break in Barcelona. The Wife and I flew to Barcelona from Luton airport. What can I say about […]

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6 comments

Stumble fall crunch and wallop

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 […]

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I love my Taotronics LED desk lamp

I love my Taotronics LED desk lamp

I bought a Taotronics light over a year ago and I have not broken it yet; that is a good start.. It is an energy-saving and eco-friendly lamp.  I guess these features make up for the terrible title to this blog so if you have read this much you might read the rest of the […]

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Another sponsored walk

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 […]

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Another milestone in the inevitable progression of my MS

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 […]

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