Re: Motor Neurone Disease

Bless you and everyone who is donating. There may not be a cure but the recognition that this wicked illness has received in the last few days is more than in the last decade. At least some research may be affordable now.

Re: Motor Neurone Disease

My sons have a family history of ALS from their father's side. His mother, their paternal grandmother had it. So It's a worry as their father has Parkinsons. I'm not sure if there is a predisposition for motor neuron disorders that runs in families.

Re: Motor Neurone Disease

There is a test familial MND which you could talk to your doctor about. Only 4% of people who have MND/ALS have the genetic disorder. However, as MND/ALS take sometimes years to diagnose then if you are very worried I would advise that you have them checked. My husband is 51 and he thinks he has had the symptoms of the illness for a couple of years, but you put it down to ageing, arthritis, all kinds of things.

Getting an early diagnosis doesn't make any difference to the disease, however as worry about health can make you unwell then may be a chat with your GP is required or even a neurologist.

I hope this helps, best wishes to you and your family. Take care.

Re: Motor Neurone Disease

The Motor Neurone Association have now hit £1000000 but in America they have made so much more. This ice bucket challenge has brought a lot of money for research but it has made people aware which is so important. We are also getting contact with people all over the world who have MND/ALS and that my friends is champion.

Re: Motor Neurone Disease

Well the good news is that we have enough money to buy a small bungalow and adapt it for Keith, so that he has a wet room, bigger bedroom with a view of the garden and television. It has been so good watching him designing the home that he will live in and gradually become very very ill in. He is taking this all in his stride and it makes me very proud of him. He has accepted that he will need so much care, and that he will eventually have to be fed by a peg.

He knows that the home must be big enough for a wheelchair, he knows that he will gradually not be able to communicate with me so he is trying to find out about all the communications aids available.

I can see that he gets weaker every day. He needs his ventilator more and more. His voice gets weak, and he is gradually losing the use of his left hand and his right hand is pretty much useless.

I do my best but the hardest thing is to be upbeat, I put his socks on and joke that my sock management skills are improving. Keith is still enjoying his food although there are things he cannot manage. Very spicy food is a nono but he is still managing to eat well although his appetite has less than halved.

I am gaining hope from the money donated to the MNDA from the ice bucket challenge and every day researchers seem to come up with something new to try as a treatment but not a cure.

I live on a swing when my highs are high and my lows are very low, Keith and my lovely dog keep things level but I cannot say it is easy.

I would so like you to look at this video.

http://vimeo.com/110025734

http://www.dailymail.co.uk/news/arti...e-disease.html

I would also like you to meet young Dr Ian Davis who pulls at my heart strings when he says Motor Neurone Disease is not incurable it is underfunded. I want to shout from the roof tops please stop letting people die of this hateful, disgusting illness. Even if it is a treatment to slow it down until the day we can say no more MND. Keith says he wouldn't mind taking a cocktail of drugs every day, he says as many pills as you like as long as I can live a bit longer.

Re: Motor Neurone Disease

Cate - I would feel exactly as you do - I hope everything goes smoothly for you and you find that bungalow soon, make sure you are with as many estate agents as possible, bungalows are a hard find now.
Can only hope you will be alright - always thinking of you x

Re: Motor Neurone Disease

Thank you for the update on how you and Keith are coping, and it is good news about your new bungalow ... the main thing is for Keith to be comfortable and have as much independence as possible for as long as possible ...

Dr Ian Davis is indeed an inspiration ... and In my opinon so are you

Hugs to you both ... Margaret x

Re: Motor Neurone Disease

Thank you both for your kindness, I am tearful again, that is the big change in me, my emotions are all over the place.

I will try and keep you up to date with the MMD Story. By the way there is a film out about Stephen Hawking, I shall be looking forward to that.

Re: Motor Neurone Disease

Very understandable Cate - no words can make you feel better, you will feel lifted then crash down, the rotten truth is you have to deal with this the best you can. Thank goodness your partner is the best you can get - together you will continue to make the best of a terrible situation. The move is a good thing really, will distract you at least x

Re: Motor Neurone Disease

Cate, I hope you find the perfect bungalow for you and Keith, it should make things easier for you both to cope.

You are a brick, very strong, very sensible and confident and I feel sure Keith is very appreciative of your care for him.

Good luck to you both, I hope you find the ideal bungalow soon and your move will not be too stressful. x

Very interesting video Cate....