JANUARY 2005
I am writing this months entry from my cell, er, I mean room in a care home where I'm in for a 7 day stretch, lucky old me! Still,with no internet,it's given me a chance to do some work on the website. As you may have noticed,the website looks a little different.This is because I'm using different software to edit it and am in the process of updating the old pages. I am still feeling quite well,I have not had any more chest pains since stopping the Riluzole and my daytime oxygen saturation has consistantly been over 95% SpO2. Since my arms and hands are virtually useless,I am now struggling to operate my power wheelchair with the joystick so wheelchair services are getting me a new one with a scanning controller that is switch operated.It will also have a tilt-in-space seat so it will be more comfortable as I spend most of every day in the wheelchair now. Being away in the care home has made me realise how good I've got it at home.I had started to take for granted the care that Sharon and the carers give me.We have arranged more care for when I get home so that Sharon hasn't got so much to do and hopefully I won't have to go in for respite care again. HOORAY!! Dorothy was right, "There's no place like home,There's no place like home...", pity I haven't got any ruby slippers,Ha! Ha!
February 2005
I have been assessed for a new piece of equipment called an Arjo Encore,which is a standing and raising aid. Basically it is a hoist which lifts you from a sitting position to a standing one,which means I can get into a much better sitting position in my chair and can spend some time standing each day.Besides the obvious health benefits of this,it is also so wonderful just to be able to stand again,the 1st time I used it at physio I was close to tears,it was just such an amazing feeling. But there's always a down side,Social Services won't fund it! So,yet again,it's going to be left to the Motor Neurone Disease Association to use their precious funds to pay for it. At the moment I'm still waiting to hear if they can fund it,either buying or leasing it. I have also received a new piece of equipment from Speech Therapy to replace the Lightwriter. It is a JVC Mininote laptop pc with The Grid access software and Windbag communication software from Sensory Software. I can operate the whole thing with just one switch! Just recently I have noticed a general weakening of my body and voice but I am still feeling quite well. I am still eating and breathing ok,which gives me some hope. I feel so useless and alone at the moment,the only thing I'm able to do is operate my computer. No one around me can understand how I feel,the only one's that can are others with MND. If I didn't have my friends on the internet to talk to,I think I would go mad. Conversely,I can never really understand how Sharon feels,we are in this thing together yet we feel so distant. Oh how I yearn for what we had before but I know that's gone forever,damn this bastard disease.
March 2005
So much has happened this month that I really don't know where to start,but here goes. I have now got the Arjo Encore standing and raising aid and my new powered wheelchair,so I am now fully operational again. I have started a course learning Qi Gong (Chi Kung) at the Willow Wood Day Centre. I find it very useful and relaxing especially the breathing exercises. I am somewhat limited as to the physical exercises I can do but I do what I can and I find that the more I practice,the more I can do. I have now finished having the care agency in and we now employ two carers or personal assistants,to give them their posh name,and so far it's working very well. Their wages are paid from our Social Services Direct Payments and Independent Living Fund awards,so all we have to pay is a small weekly contribution. I have been to see the neurologist for my 3 monthly check up and I told him I had stopped taking Riluzole,which he wasn't really concerned about (which says it all about Riluzole). My arms and hands have continued to weaken further and I have noticed a reduction in movement of my tongue which is causing further problems with my speech and also chewing,so I've had to start having certain foods blended to make them easier to eat. The only prescription medicines I'm taking now are Fluoxetine(Prozac) and Baclofen,supplements include Vitamin B complex,Selenium with Vit. A,C,E, Milk Thistle and I'm just starting a self-trial of Sublingual Vitamin B12,so I'll see how that goes. Last month I was a little down but I'm now in a much more positive state of mind,despite being banned for 2 weeks from the Braintalk ALS Forum for protesting against the banning of another member,such is life!
Look Inside
If at any time I begin to lose hope in myself, let me simply look inside my heart and see all the good actions I have ever performed, from the smallest to the grandest. When I see how much happiness I have given, I easily remember the purpose of my life.
Can you?
“Whether you think you can
or whether you think you can't,
you're right!”
Copyright © 2004 - 2005 Rob Marshall