Monday, 13 June 2011


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.


  1. I've been fighting the technology/equipment battle for about 7 years and it's tough going. I totally agree with you but the MNDA have a love for the useless lightwriter. If you can use your hands there are iphones and ipads now. Eyegaze is amazing and can be passed on. Hopefully the MNDA will realise that soon. Al the optimist is one too many optimists for me! I spoke to a Panorama producer on Friday about showing what mnd is really like and not only showing mnd suicide on TV. I think it's unlikely that he'll be interested somehow. You have a wonderful talent for writing Pauline and are more than doing your bit. I'm off to share this brilliant blog now. Didn't see Pratchett because daughter was watching Glee. Can't work out which programme will annoy me more...

  2. tracey gibb hudson13 June 2011 at 14:44

    I still have my husband Grahams cough assist here it cost us 5,000.00 and we fundraised every penny in 5 months the m.n.d. association dont want it so its just sat here .
    I have just watched Terry Pratchett and altough it did have 2 m.n.d sufferers on it they had had the disease quite a while my husband was Ventilated within 6 months of being diagnosed and totally bed bound .his journey lasted 17 months from diagnosis to death 46 years old .

  3. Amanda Gullick13 June 2011 at 16:32

    we seem to have loads of MND websites, why can,t they all get together and get a warehouse and van to collect all this unused equipment, then money raised could buy equipment for different stages of this disease, i have gone through equipment so quickly as once its in, i may get a month if lucky before it has to go back and my ot is bring something else. we haven't got time to hang around we need to be a couple of steps ahead to get a good quality of life. as for tv people can't watch other people waste away, it scares them to death, but 2 mins of watching someone having a drink closing their eyes and we are told they have died is easy, i have sat twice, watching my mum waste away and die and then my younger brother do the same, to be told while he was wasting away that i have mnd thats what you would call a block buster but that would scare to many people. we need some producer with balls to do a proper take on mnd and what really happens they can come and film me but i know they never would lol too bloomin scared

  4. linda bartlett13 June 2011 at 23:51

    Well done Pauline. Your writing is brave, sincere and thought provoking, whether in verse or not. I believe that you should keep fighting for a TV programme, and one day you will win. Sad to learn of the waste of valuable resources within the agencies and charities concerned, but, as ever, they are only as efficient as the individuals organizing them. Keep fighting!

  5. Nicola Goldsmith said..

    Keep up the fight - you might not be able to help everyone who has mnd but even if your efforts make life a bit easier for just one fellow sufferer you can be pleased. You are doing a remarkable job communicating your suffering. I am sure it does not go unnoticed and I know that it will change someone's life somewhere.Please don't be too disheartened and carry on doing what you are doing. You are amazing.

  6. Sorry to hear about your problems, & surprised to hear you'll have to pay for equipment. I was diagnosed 3 years ago, & last year OT & SALT referred me to West Midlands N H S department - Access, to, Communication, Technology, who have lent me for free -

    Origin Instruments’ HeadMouse Extreme, to move the cursor on my laptop screen. What looks like a camera is fitted on top of the laptop screen. It sits there facing me, & interacts with what looks a small piece of plastic which is stuck on the front of my spectacles, right above my nose. I can move the cursor just by moving my head. I also keep my hand on a mouse on a tray on my thighs, & click on it to select letters etc.

    & Grid 2 – software which provides an on screen keyboard, & a speaking machine on which I can save sentences, instead of having to keep rewriting them for different visitors.

    I was also, Tracey, loaned a Cough Assist machine by NHS at Stoke Hospital .

    All the best
    James Shaw

  7. Very good comments made there Pollyanna, i agree with you about the optimist part especially. I am no Artist, musician, inventor or anything like that, just plain ordinary bloke trying to deal with all whats thrown at you with this disease and find it hard to be optimistic all the time. I really do hope you get the chance to do a documentry, i think we need more shown about the hard things we deal with on almost a daily basis.
    Your poems are fantastic to read and it would be great to see more notice of that, keep up the good work and i hope your feeling better soon.

    Take care, Chris.