Monday, 28 September 2009

MND is....

Remember those cute Love is... cartoons by Kim Casali?

I thought it's time for some MND is...

MND is... an illness that totally changes your life. MND stands for Motor Neurone Disease and is also called ALS or Lou Gehrig's Disease. It paralyses the muscles which can affect mobility, speech, eating and breathing. It kills five people in the UK every day but raising awareness is like trying to get blood out of a stone! Is my pain really too shocking for TV?

Those are the facts; this is what MND is to me:

MND is... being unable to use my arms. But I can type with my chin which is pretty cool! I can only read e-books and just yesterday some titles were recommended to me. I happily started searching online and couldn't buy any of them in e-book format, sooo frustrating. The worst part of floppy arms is when you literally have an itch you need to scratch - I'm getting itchy thinking about it!

MND is... becoming an employer. I need 24/7 care and have to arrange everything, from hiring to firing and paying salaries. I got ill and became a recruitment consultant/bookkeeper. I don't like those jobs and am pretty rubbish at them. Needs must and all that. I have a wonderful team of carers now and am grateful that I have free care, enabling me to live at home with my children. Many MND sufferers are not so fortunate.

MND is... speaking in a alien tongue! Slurred speech was one of my first symptoms. I went from sounding drunk to speaking unintelligible gibberish. But I have the technology and an American synthesized voice, so can't complain. I do believe that losing my speech has been the most difficult aspect of MND for me and if I could have one thing back, I would choose speech.

MND is... a window of opportunity. I don't take anything for granted anymore and live life to the full. I believe that I've experienced more since diagnosis than I would have if I were well. Would I ever have started writing or participated in films and photo shoots as an able, middle-aged mum and housewife? I've met some amazing people, both in person and through social networking sites. I try to share my knowledge, as a long term survivor, to help others and raise awareness and funds. I wouldn't go back to my old life but dream of seeing a world free of MND.

In conclusion, MND is a horrific, silent killer and we desperately need a cure. If anyone reading this would like to help in any way, please give me a shout, thanks!

Wednesday, 9 September 2009

How Some Health Professionals Continue to Fail UK MND Sufferers

I attended my local MNDA meeting on Sunday and met a newly diagnosed woman called Sylvia. She has totally lost her speech and was given a Lightwriter. I detest them, possibly because I was given one with the wrong switch, so couldn't operate it. I appreciate that they are possibly the cheapest communication devices, which is why the MNDA provide them, but there are better options available. Unfortunately, Speech and Language Therapists (SLT) do not have a budget to provide communication equipment, which I find ridiculous, and I'm going to help my SLT address this issue in my Borough.

Back to Sylvia....she had her Lightwriter with her, along with a list of problems that she's experiencing with it. Me thinks 'easy, I'll help her', but after an hour I had to admit defeat. Whoever set it up had hidden the settings menu. Sylvia had told her SLT who has done nothing to help. Sylvia wrote to the supplier who didn't write back. Imagine being unable to speak and having the technology to help you but no support for that technology. Frustrating isn't it?

This is Mick Ferguson's story: 'Hi Sarah, here's one for you. My nurse got in touch with my Occupational Therapist to find out about a wet room. So after 4 weeks we get a visit. I might as well not have been in the same room as she spoke to my wife more than me. I went out of the room to go on my nebuliser for 5 mins and when I came back in the room I heard her saying to my wife 'if my boss thinks he will live for more than 5 years we might be able to get one'. So I wrote on my board, I will try to.....'

Shouldn't health professionals have some sensitivity? Hopefully, Mick will survive for a long time, what then?

I just received this email from Louisa Norman, whose father has MND and hasn't been given the equipment he desperately needs: '
Today after much talking on the phone to this Steve, Occupational Therapist, he agreed to come out and reassess dads needs. He sat in the same seat as he did over a year ago and asked us, "What do you want me to do?" I answered, "Could you tell us what you can do rather than we ask you, your supposed to be the professionals!" He didn't quite know what to say. Brenda, (Dads wife) kept asking why things weren't done when we originally asked for them because if they had of been we wouldn't have these problems now. All his answer to that was, "we're here today to discuss what we can do for Barry not what we haven't done for you in the past." We have had no support whatsoever from the MNDA. We have no MND nurse in our area and are literally fighting for all we are worth. Dad's motivation for living is deteriorating too and I'm frightened that unless we get these things sorted out he will give up completely. We need help and support and have nowhere to go with this, except possibly the press, to expose the flaws in the system. Please help us Sarah, how can we do something about this?'

I will try to help the Norman family to the best of my abilities. I gave presentations to hundreds of health professionals, outlining the problems I experienced, but it obviously wasn't enough. My Children's Social Services case is still closed (article). The fight continues.....