Journal Page 1

LIFE B.D.(Before Diagnosis)

I am writing this journal partly as personal therapy and partly to share my experiences of living with motor neurone disease.

My name is Rob and at the time of writing I am 37 years old.I live with my wife Sharon in Nottinghamshire,U.K.

I was just an ordinary sort of bloke working in a hosiery factory as a knitter until early in 2002 I started to get cramps in my legs at night.

I went to see my doctor and he gave me quinine for night cramps but this didn't help.

Two or three months went by and aswell as the cramps I started noticing twitching in my arms and started to lose strength in my right arm and leg.

Obviously worried by this I made another appointment at the doctors. This time I saw a different doctor,who I later found out had trained in neurology.

After a thorough examination I was referred to a consultant neurologist at the hospital, I still didn't know what was wrong with me.

It was 9th July 2002, I went to the hospital with Sharon. I spent an hour with the consultant,had some tests and then went back to see the consultant.

That was when our lives changed forever when he uttered the words "you have motor neurone disease".

LIFE A.D.(After Diagnosis)

I left the hospital totally numb. I had heard about motor neurone disease,the documentary about Diane Pretty had just been on tv so I knew things were not good.

I took a couple of days off work and did a lot of talking with Sharon and a lot of research on the internet.

Gradually over many weeks we came to terms with it and formulated a plan for the future. My boss let me change to a desk job and we sorted out the finances by selling the house and buying a ground floor flat.

Of course we were continually running the gambit of emotions,anger,depression,grief and "why me".

But through all this we managed to remain positive.

I returned to hospital for E.M.G and nerve conductivity tests which confirmed I had Amyotrophic Lateral Sclerosis (A.L.S.).

So this brings us to where we are now, April 2003.

My limbs continue to get weaker,I have little use in my right hand but still manage to walk with a stick. Although after a few too many falls I have decided to use a wheelchair when we are out and about.

My lack of mobiity is the thing I find most frustrating,after 18 years I have had to give up driving. Also not being able to do simple things like fasten buttons drives me mad sometimes,

but I try to keep my mind focused and have taken up Raja Yoga meditation which I find very helpful. (see Raja Yoga page).