No.64. Let it be for MND.

Yesterday was pretty much the same as before, Chris working too much, but I`ll let him off till the sale is over, there will be no excuses then. On a slightly funny note, according to Chris anyway, he said while he was power washing the sprayer he could barely stay upright as the power from the water was almost knocking him over. Guess that shows how much strength he has lost.

I bought some insulation pipe for his cutlery to make the handles thicker. It seems to work quite well even if Chris did make a face when I showed them to him. I also rang the people who supplied the wheelchair, they told me I had to go back to the person who refered Chris in the first place, the physio, to get a new referal. I then had to phone the physio and she phoned me back later to say she would do that, so now we wait, though to be fair, they were pretty quick last time.

Writing this blog has helped me personally in so many ways, not least from the advice that has been offered from others who have or are going through MND. I know with some people who have lost loved ones to MND it is probably digging up unwanted memories. I never wanted to upset anyone. This is just a record of Chris`s experience with this disease, sometimes it will be boring, always it will be honest and frank. I hope it will continue to be that way.

The Ice Bucket Challenges have not been without controversy and I`ve found myself getting very angry and irrate about our TV`s representation of them. Shows like `This Morning` and `Good Morning Britain` have shown presenter`s doing the challenges, but rarely is MND mentioned. Yes ALS is, but very few people in this country know what MND is, let alone ALS. Never once has there been information about actually donating, which is pretty important I think. I believe some people even think ALS is cancer due to a (predominantly) cancer charity hijacking it for themselves. They are a great charity and do a great job, but I think they would have something to say if MND started advertising that they were organising the worlds greatest coffee morning. This is the first time, as far as I know, that MND has had such high profiling. It would have been gracious of them to just let it be for MND. I 'm not talking about individuals here, they are free to raise money however they choose, I'm talking about the organisation itself. Hopefully constant nagging from many of those fighting for this disease, including me, will help get the message across. Certain newspapers are just as bad, promoting ALS / MND in their article and then giving the donation link for Macmillan. Unbelievable!!

MND is a rare disease, only around 5000 people have the disease in the UK at one time and 5 die from it every day.The Motor Neurone Disease association gets no funding from the government, it relies totally on donations, so having something like this Ice Bucket Challenge to promote awareness is priceless. Unless the media educate themselves and come on board with this awareness campaign, then it might not take off in the same way as it has in the US. I wish and hope it will though. I read or heard somewhere, that is takes a Billion dollars to develop a new drug of any kind and there is no incentive for the drug companies to develop an MND drug as the take up would be so low, the returns wouldn`t pay, so the research comes from MND/ALS donations alone.

I get that you probably have to be touched by this disease in someway to be affected by it. We all know someone who has had cancer, but not many people will thankfully, have come across MND. I'm sure my constant posts and rants on social media, may be irritating to some, but this is the only tool in our armoury, getting awareness out there. The only drug prescribed, Riluzole, seems to have made no difference to Chris at all. 'Just keep taking it' his consultant said, 'It might be helping', but it does feel like it is like grasping at straws some times. We are never going to know if the MND would have progressed faster or not without it.The great support care that is offered is from the palliative care team and that speaks for itself. No cure..terminal..the end.

Let's those of us that can use our voice, help those who have their voice and much more, stolen from them. The fight goes on until a cure is found one day. Get scared MND, the world is coming to get ya !!!

If you want to Donate to the MND association the just text :  ICED55 £5 to 70070 
or at www.justgiving.com/icebucket4mnd/