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August 2004

At the beginning of this month it was my daughter Samantha's 18th birthday.We attended a surprise party for her,which she had no idea of,so it really was a surprise. It was quite an emotional evening but an enjoyable one,I wouldn't have missed it for the world!

Visited the Neurologist again this month,I tried to discuss advance directives with him, especially my wish to have invasive ventilation when I have problems breathing. But they didn't want to know really,all I got were negative comments like,"we all have to die sometime" and "no one lives for ever",well DERR! Anyone with a life limiting condition faces their own mortality every day,we really don't need to be told.

I know there are negatives to living on a vent,cost of equipment and homecare,impact on home and family,the danger of becoming "locked-in". But there are positives too, spending more time with Sharon(we have only been married 2 years),watching my children grow,

being around to help others with MND, to show them that there is HOPE,even though most doctors don't give them any.Thankfully not all doctors are like that,I shall seek out the people that are prepared to help me on my long and difficult journey,not everyone has the guts for it,BUT I HAVE! So let battle commence!

As for me,I'm still doing ok. Can't walk but can still stand(with help),arms and hands still useless but can operate computer and power wheelchair,speech is getting worse but they have ways of making me talk, eating and breathing still ok,inside I feel GOOD!

"The soul flies, the body plods. If you identify with your body, you will feel heavy. . If you think you are a soul, you will feel light."

September 2004

I went for lung function tests at the hospital this month.

My Forced Vital Capacity is 3.7 litres of air,that is 73% of what is considered normal for a man of my age and height.This is quite good considering that I have had MND for over 2 years now,usually intervention(BiPap) is not required until FVC drops below 50%.

They also checked my blood gases which came back ok and did a sleep study to check my breathing while I'm asleep,but I don't know the results of this yet.

My laptop had to go in for repair,had a new main board fitted.I've got it back now so I've been busy reinstalling all my software.

As for me,I'm still progressing fairly slowly.I decided to give my body a rest and stopped taking all my medication,including the antidepressants. Big mistake! I thought I would be strong enough to cope without them,but obviously not.I slipped into deep depression again, was horrible to everyone and it took an arse kicking from Sharon to make me realise that I did need them.I am now back on all my medication and feeling much better,except for a bruised arse of course,lol.

I have recently heard that since my altercation with our local wheelchair services(see my entry for August 2003),that they have changed the system to give people with MND priority for powered wheelchairs.Which is great news,at least people won't have to fight,like we did, to get one quickly.

October 2004

Well,I've made it to another year older,it's the big 40 next!

I have noticed quite a big deterioration in the strength of my arms and legs recently.I'm having more problems standing and transferring,controlling my power chair and operating the computer. We have solved the latter problem by purchasing a SmartNAV AT head controlled mouse,so I'm writing this with my head! See,there's always a way round any problem.

My eating and breathing are about the same as before,which I'm thankful for.

I am still feeling quite good and still have a positive outlook on life.After all,there's nothing I can do about what's happened to me,so why worry about it.I try to concentrate on the things I can do rather than dwell on the things I can't.

We went out for a meal with my family,which was really a trial run to make sure they could get me in the car to go to Mums for Christmas.We managed it quite easily and really enjoyed the meal,thanks to Ian,Leslie and Jess. :-)

Just had my flu and pneumonia injections,ended up passing out again.Damn those needles!