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July 2003

Got the loan of an electric wheelchair from MNDA.Its great to be able to go out on my own again.

The flat is finally finished,except for the bathroom which is being adapted in the near future.

As for myself,Ive been a bit down this month and not sleeping too well.Finding it hard to write anything about this month.

One good thing,had a card from work and the proceeds of a collection they had.It really lifted my spirits to know they were all thinking of me.

August 2003

Started on antidepressants(Prozac) and I feel much better now.

Had a battle with wheelchair services over providing me with a new indoor

/outdoor powered wheelchair,they wanted me to wait a year for one.

But after some letters and a bit of adverse publicity in the local press they agreed to supply me with one and I should get it at the start of October.

It has caused us both a lot of stress and I have felt quite ill at times. It makes me so angry that people have to fight for the things they need,the equipment should be there when they need it.

Anyway,that's my little moan over with.

Saw my consultant this month and he said I was doing well and only progressing slowly, which cheered me up a bit.

September 2003

Went into hospital for assessment and to give Sharon a break but came home after the first night.I felt so ill and couldn't sleep,it really stressed me out.I hate hospitals,I never want to go in one again.

Had another fall so I have given up trying to walk.I use the manual chair to get around indoors and my new powered chair outside.

I have started to lose the use of my fingers on my left hand now,I just hope I don't lose the use of my hands and arms completely,but if I do I will have to deal with it.

Also my voice has deteriorated and people find me hard to understand at times,

(nothing new there then :-)).

I have booked in for respite at a local care home for a week in December and then for a week every 3 months.Sharon is finding it very tiring looking after me full time on her own,so this will give her a much needed break.

She has been wonderful to me,I don't know what I would do without her.

Sharon is my Angel,she lights up my life and I love her so much.

October 2003

Apologies for the late update this month,but just got back from a wonderful weeks holiday in Scarborough.

It was my 38th birthday at the beginning of the month.Sharon organized a special tea for me,with a cake and everything and all the family, that could make it, came.

It was a special evening and I really enjoyed it.

Started taking Coenzyme Q10 as well as the Riluzole and vitamins C & E. There is some talk that it may be beneficial in slowing MND although trials have yet to be completed,I can't wait that long.

I have joined a campaign called "Right to Live",which is to be launched early November.It is trying to gain access,for people with MND,to experimental drugs which may be beneficial. It it also trying to raise public awareness that not all people

With MND want to die as portrayed in the media,some of us WANT TO LIVE!

Back to the holiday,we had a lovely time at the Breece Hotel which was specially adapted and had carers on duty 24 hours.It was a nice break for both of us.

On the last day,a lady of 95 who was staying at the hotel,came and asked our names.Then she looked me in the eye and said"I will pray for you both every night".