November 2005
It's been an uneventful but quick month,got through bonfire fortnight unscathed because I don't seem to jump so much now at loud noises.
Had my flu vaccination this month and I didn't pass out(woohoo!),mind you I was lay down at the time,lol.
My friend Pete has been out and about in his power wheelchair with his ventilator on the back and has sent me a photograph to show that anything is possible with courage and determination.
I'm still waiting for the environmental control people to get back to me to connect the environmental controls and the Mininote speach device to my wheelchair so that I can control all 3 from the one switch. Maybe I'm asking too much? But my speech is almost unintelligable now and it would be much easier to just have the one switch,which I now operate by squeezing it between my thighs.
I'm having more problems eating now,even blended food,so I'm in the process of going 100% tube fed. I can still drink thickened liquids ok,which I'm glad about because having alot of liquid through my tube makes me feel sick and I can still have my pint of beer at night!
I've had another sleep study done,at home this time,and have seen the respiratory consultant. He feels that I wouldn't benefit from any ventilatory support at the moment,although I've not had the results of the sleep study yet.
Well it's nearly Christmas again. How come as you get older time goes by quicker? Will have to get Professor Hawkings on that one.
WE WISH YOU ALL A HAPPY AND PEACEFUL CHRISTMAS.
December 2005
I got a new toy to play with this month................ a suction machine! (Wow! I hear you all say).
I have been having some problems with irritation and secretions in my throat and as I can no longer cough properly,these were causing me to choke a little so that's where the suction machine comes in.
Christmas was strange for me as this was the first year I couldn't eat Christmas dinner,although I did attempt a little blended turkey curry on Boxing Day,but I struggled. We had visits from my family on both days,so that was nice.
My neck has gotten so weak that I can't hold my head up,so I've started using a head strap to fasten my head to the wheelchair's headrest. Here is a photo of me using it,the clothes pegs are to stop my straw whizzing round the cup when I have a drink.
I've had the results back from last sleep study and they were ok,so that's a bit of good news.
Well that's about it for this year,wonder what 2006 will bring? (Probably best I don't know,lol). Let's hope it brings real advances in research into a cure for MND and better awareness for the disease,both for the public and healthcare professionals. But most of all,I hope it brings peace and contentment to everyone in the world.
(Although,in reality,I know it'll probably be the same old shit but we can always hope).
January 2006
This year started tragically with the death of Sarah Finnegan (aka Duckie),who was a good friend to many of us on the Build Forum. I won't go into the circumstances of her death in detail as I find it too upsetting,but needless to say it was an unecessary passing of someone with MND due to incorrect treatment in a hospital.
We must raise awareness in hospital staff to the care needs of people with MND,Sarah was a wonderful person who had alot more to give to the world and I personally will miss her very much.
I've had bad stomach problems this month so not done much and spent alot of time in bed(which I hate). Had the doctor out a couple of times and getting towards the end of the month I'm starting feel better,although I'm still off my feed on liquids only.
Pete Charman has written two great articles for the Build website,the first is a presentation called Motor Neurone Disease - A Way Forward and the second is Invasive Ventilation - The Right To Choose, both can be viewed on the Build Campaigns Page.
Copyright © 2004 - 2006 Rob Marshall