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November 2003

This month has gone so quickly,time just seems to be flying by.

Visited my neurologist again,still progressing slowly,my limbs are still getting weaker

But my breathing and swallowing are still ok,which are the two things of most concern.

Glad Bonfire Night is over,every time a firework bang caught me off guard I would jump and both arms would jerk uncontrolably.Which looks quite funny,unless I have a knife in my hand at the time. ;-)

Well it will soon be Christmas and the next time I update this site another year will have gone.

We wish you all a merry Christmas and a happy and peaceful New Year.

December 2003

At the beginning of the month spent my first week in respite at The Shires. I was quite apprehensive at first but ended up quite enjoying it.

Spent Christmas Day with all the family at Mums which was great,but I think I over did it a bit with the food and drink as I ended up in hospital that night with breathing problems.It was nothing major and I was back home by Boxing Day evening but it gave us all a scare.

I am finding it difficult to control the mouse by hand now,typing this is a real struggle even with the on-screen keyboard.So I am going to have to find a way to control the mouse with my head,I'm looking at various options at the moment.

I am not looking at MND as a terminal illness any longer,more of a disability to live with.It has been two years since I first started with symptoms so I have started looking at it as a long term thing now.

Although my body is getting weaker,spiritualy,mentally and emotionally I am the strongest I have ever been.

I have taken great inspiration from a piece of writing published on the internet by a lady in USA who has lived with MND long term and has interviewed several other long term survivors.

The piece is entitled The Survivors: What keeps them going.

January 2004

Well here we are in 2004,wonder what this year will bring.

My New Years resolution is to spend less time on the computer and more time in Reality.

I've given up taking the coenzyme Q10 as it didn't seem to be doing any good and it is so expensive but I have other things in mind for when I see the Neurologist next month,namely Minocycline and Testosterone.

My arms and hands are so weak now that I struggle to do anything with them,I even have to be fed at meal times. Luckily I can still manage to use the computer. :-)

The rest of me hasn't seemed to get any worse other than my speech which is even harder to understand especially when I'm tired.

I thank God I am progressing slowly and I am full of hope for the future.Silly as that sounds,if you don't have hope you have nothing.

I try to keep myself as active as possible,I attend a local day care centre twice a week and I have joined a group called RAID(Raising Awareness In Disability).

They give talks to schools,colleges,employers,etc. on the problems facing disabled people.

I meditate and pray every day,this gives me the strength and positive attitude to carry on and face the challenges ahead.