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February 2004.

Had another week in respite at the beginning of the month and all went ok. It's getting a regular home from home now.

Visited my Neurologist again and was surprised to find that I had put on 7lbs in weight in the last 3 months,even though I'm still losing muscle mass.

Everything else was much the same. He agreed to prescribe me Minocycline and I've been on it 2 weeks now with no noticeable side effects.I hope it slows "The Beast" even more.

My daily drug regime is now: Riluzole 100mg & Minocycline 100mg to slow MND(hopefully). Baclofen 40mg for muscle spasticity. Fluoxetine(Prozac) 20mg to fight off depression and combat emotional liability.

Supplements: One a day multi-vitamin for general wellbeing and Yakult pro-biotic drink to combat the effects of minocycline on the guts.(Topping up my friendly bacteria). :-)

My Neurologist keeps telling me "you're one of the lucky ones", lets hope so!

Just got my LightWriter,so I'm busy playing with that at the moment.

March 2004

Been busy this month setting up a home care package with Direct Payments from Social Services.We have an agency coming in at the moment but when we get more money from the Independent Living Fund at the beginning of April,I will be employing my own Personal Assistant. Sharon and I might be able to get back to being more like husband and wife then,rather than carer and client.

I am still feeling ok and I haven't noticed any change in my condition.The dosage of Minocycline has been increased to 100mgx2 daily without any noticeable side effects. Also been looking into pressure relief in bed and I'm having some alterations done to my powered wheelchair to make it more comfortable.

As for my New Years resolution to spend less time on the computer…..Well it didn't work! As well as this website,I have been working on the Right To Live Campaign site as well. The internet is my life line,my source of information and through it I get support and inspiration from friends and fellow sufferers from all over the world.

"Just as the bird has to find the courage to let go of the branch in order to fly, so we also must let go of our branches if we are to know the exhilaration of soaring to the highest potential of our life. The branches we hold to are our inner attachments - our beliefs, ideas and memories. And then there are the outer attachments - people, possessions, positions and privileges are a few. But as long as we hold on to them we will live in fear (of letting go and loss) and we will never be free. And just watch those birds, by letting go of one branch they are able to spend the rest of their life alighting on a million other branches, and they enjoy the view from each. Are you flying and soaring in your life, or are you stuck on one branch, cursing others as they fly past. Go on, try it ...let go!"

April 2004

Well its now been a year since I started my journal and looking back it's amazing how things have changed.Obviously I have changed quite a bit physically,I am progressing moderate to slow.

We now have a care agency coming in 7 days a week to take care of me and to take some of the strain off Sharon.The P.A. thing didn't work out,but the agency are very good.

I've had to stop taking the minocycline as it didn't suit me and was making me feel ill but at least I got to try it.(I will try anything at least once!)

As I can no longer write or sign my name and my speech is getting worse,I have given Power of Attorney to Sharon so she can act on my behalf.Many thanks to Notts. MNDA for paying the solicitors fees.

We continue to adapt as the disease progresses,there is always a solution to any problem.We are having the bathroom adapted in May with a Disabled Facilities Grant and thanks to Scott Delaneys SayIt software I will be able to continue using my computer and updating the website no matter how bad I get.

In this world of darkness,every so often you come across a bright,shining star and once again your heart is filled with light,giving you the strength and courage to carry on with your journey.