THE SOAP BOX.......

You may have noticed that I haven't posted anything for a few weeks.I pressurised myself into believing that I should post everything in rhyme; however, although I do have inspirational days with regards to my poetry, some days I feel too depressed to even contemplate writing a poem..

I have just been looking on the website/blog of Alistair the optimist. Should I feel humbled or should I remonstrate with myself that I am not forever optimistic?  Although I admire Patrick the optimist and Alistair the optimist, I cannot help thinking that they are in the minority.when one thinks that there are about 5000 people in the UK with motor neurone disease and that these are just  two amazingly talented and enthusiastic young men. I feel that I must stop beating myself up because I am not "out there" doing my bit!

Having said that, I would really love it if some of my poetry was  to be put in the public domain for people to read as I feel that it puts across exactly what I feel and what it is like for people suffering with motor neurone disease; however "in your face" the words seem, these things really need to be said. I find it amazing how there is still so little that people know about a disease which, currently, due to the programme made by Terry Pratchett, is in the news so much. I really feel that a documentary should be made which just notes the progress of the disease in 'everyday folk' with motor neurone disease; perhaps, an ALS sufferer who progresses quickly and,  PMA/PLS sufferers who progress more slowly but with just as devastating an effect..

It is great that we have people such as Patrick and Alistair to 'promote'  the disease, but I really do not think that it shows the disease in its true light. We hear about how they are painting and Drumming despite the progression of their disease, which really is truly amazing. But we do not hear about how someone head butts the floor because they tripped over due to their dropped foot or how someone trips over and fractures their leg or can no longer feed themselves or wash themselves or go to the toilet alone............... the list is endless and it is these sort of things that really need to be put across to the public so that they understand the devastating effects of this disease . What with Prof Stephen Hawking, and these two young men, people may well begin to think that motor neurone disease only affects the supertalented and not everyday folk such as myself..

Something worth thinking about, perhaps. I, along with the brother-in-law of a fellow sufferer have been trying to get a documentary made by Channel 4. As yet no real progress Perhaps it is because this disease is not spectacular in itself but gradually drags a sufferer into oblivion. I live in hope that the documentary can be made and that we can raise, not only the awareness of the disease, but what the devastating effects are on both the sufferer, the carer and the rest of the family.

P.S I have just read Patrick's latest post in his blog; this is what MND is all about!  It is sad and devastating that his disease has progressed to the extent that he is no longer able to paint or draw. However, this is the aspect of the disease that we need to get across to people. However optimistic Patrick is, the disease is ravaging his body the same as the other 4999 people suffering each day with motor neurone disease.. Patrick mentions how antiquated any equipment available for MND sufferers is; for example, "the light writer". I do wonder whether the fact that we all die encourages a certain amount of lethargy with regards to developing better equipment. But surely, quality of life is important? The very fact that our brain is unaffected and we are fully aware of our surroundings and have all other senses means that we should be allowed to live the rest of our lives with some dignity and some purpose. I, for one, spend much of my time researching the net to find equipment for me to carry on typing my blogs and writing my poetry and carrying out my role as the vice president of education at my speakers club. My arm strength is deteriorating to the extent that I am no longer able to type more than a few words using my hands and am unable to pick up equipment or books. Apart from the stress of trying to anticipate the next downward milestone, there is also the expense. Not everyone has the financial resources to afford all of these things which are certainly not provided by the local authority; though some charities do help out.

WHAT needs to be remembered is that, although equipment which may be provided for an MND patient will only be used for a finite amount of time, that equipment can then be passed on to another MND sufferer and reused.  It is not like a drug which is taken by an individual and the cost is absorbed by that one person. Ssurely, these things should be taken into consideration when deciding whether it is worth providing equipment for an MND sufferer.? Mind you, the lack of coordination between services and even within charities means that passing equipment on is not always as easy as it seems. A friend of mine who suffered from MND recently died. He had an 'eye gazer' which was provided by funds raised by a friend of theirs. His wife offered this device ,worth £15,000, to the MND charity which has still, four weeks later, not picked the device up. This device could have been utilised by someone to provide them with that four weeks of communication. It is imperative that people get their acts together and sort things out quickly because this disease does not hang around waiting for red-tape to be overcome.