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Please read Keith and Helen’s story, the inspiration for our challenge...

Words can change your life.

It was 1995. My wife’s Neurological Consultant at the Nottingham Queen’s Medical Centre leaned across his desk and said, “You have MS Mrs Tilson. I’m afraid your MRI scan is very definitive; there is no question.”

There was no hammer blow, not at first. Instead there was relief, because at last my wife had a reason for the mysterious symptoms she had experienced; the pins and needles in hands and feet, the sudden, intense pains in her joints that would last for a day before moving on to their next target; the sudden bouts of fatigue and not forgetting the short round of distorted vision in her left eye. Yes, at first she felt relieved that she wasn’t going mad, there was a genuine reason for the things she had experienced.

Only then came the question; “MS? What is Multiple Sclerosis?” Truth is MS is different things for different people to different degrees. Nowadays you can simply go on line and find out what MS is and if you do this there are many good websites. Maybe after reading this you might fire up Google and you will find yourself reading phrases such as “long lasting disease…”; “degenerative condition...”; “affecting your brain, spinal cord and optic nerves…”.

 A more in depth rummage will uncover words like; “…cause unknown..”; …autoimmune dysfunction..”; “…destruction of myelin (the coating that protects your nerves)…”. You might even venture to ask what the effects are and find; “uncontrollable muscle spasms…”; “altered or loss of sensation…”; “difficulty moving arms and legs… trouble walking…”; “…weakness or tremor in arms and legs…”. Scary words? You bet, but perhaps the worst one is simply; “…incurable…” Thankfully, however, the word “contagious” does not apply.

But these are just words right? 

No. These words will change your life forever because they have real meaning and not just to the person with the condition, but all of those around them, right down to the person in a shop who might have to wait for my wife to pass by on her scooter! But what does this really mean to someone with the disease? Well, I have watched, powerlessly, as my wife’s health declined over a 23 year period. She was a fit and active mother of two, she had a job and was great at sport. She did all of the normal things you might expect of a young person.

Over that 23 years I have seen the extreme fatigue (especially in hot weather), I have seen her mobility gradually ebbing away until she now walks with a Zimmer Frame or uses a scooter if she needs to go further than 10 metres. I have seen the uncontrollable tremors (clonus) and watched her in extreme nerve pain for no apparent reason at all. I have seen all of this and much more and I still don’t know what MS is and the worse thing is, we don’t know what tomorrow will bring. Will it be a good MS day or a bad MS day? And if it’s bad what does that mean and how long will it last?

Words can change your life, “You have MS…” certainly will.

Thank you for supporting the Bluecoat Mathleates with their challenge to support those who suffer with MS.

Keith and Helen Tilson

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