I'm dying. And fast.

That ‐ in short ‐ was what my doctor told me when I was diagnosed with Motor Neurone Disease just weeks ago.

It's not the news you expect when you are 29 years old.

Motor Neurone Disease (or MND) is a rare, progressive and debilitating disease that attacks the brain and spinal cord. It leads to weakness and muscle wasting and will affect how I walk, talk, eat and breathe. There is no cure.

Soon it will kill me.

I don't want pity. All I want is for you to take action to help fund a cure and fight for better care for people with MND.

It'll be too late for me, but we must ‐ and with your help we will ‐ find a cure for the next generation.

With your help I can turn a negative into a positive.

Thank you for your support,

Five Point Fightback

Here's five things the Scottish and UK Government's could do right now to help fund a cure and improve the care provided to MND patients:

  1. Double MND research funding

    Researchers don't even know yet what causes MND, never mind what they need to do to cure it. By doubling the amount of money the UK and Scottish Governments spend on MND research we can find a cure quicker and stop the needless loss of life.
  2. Fast-track benefits
    People with MND do not live long: half die within 14 months of diagnosis. Yet, can take up to seven months to process applications for the benefits they need such as Personal Independence Payments. What's more, during this time carers can't access the help and support they need either. The UK Government needs to develop a system that ensures terminally ill patients and their carers get the support they need, when they need it.
  3. Outlaw care charges
    Shockingly, in some parts of Scotland, MND patients are being charged for the help they need with things like washing, dressing and feeding themselves. That is despite clear guidance saying terminally ill patients should not be charged for personal care. When you are on your deathbed: worrying about where you will find the money to pay for the care you need is last thing you should be on your mind. The Scottish Government should make charging terminally ill patients illegal and introduce tough penalties for councils flaunting the law.
  4. Delivered:

    Pay MND nurses from the public purse

    The specialist nurses that provide the care and support I need are a lifeline. They have decades of specialist knowledge. I don't know what I would do without them. And yet Scotland's seven specialist MND nurses only exist because of donations made to charity. That's not fair: these nurses are providing a vital public service, they should paid for 100% from the public purse. We can and should be providing this vital service through our NHS.
  5. Delivered:

    Double the number of MND nurses

    At any one time there are around 400 people living with MND in Scotland. And yet there are only seven specialist nurses for the whole of Scotland. That means they have massive geographical areas to cover resulting in a huge amount of their time being spent traveling to get to patients instead of caring for patients. What's more despite the fact that the number of people in Scotland with MND is increasing the number of nurses has remained constant. If our NHS funded more nurses it would mean MND patients would get the help and support they need to improve the quality of their lives sooner.

Email your MP and MSPs asking them to back the 5 Point Fightback

Your emails have been sent. Thankyou.

Tweets from @gordonaikman

Imagine losing your voice, forever. For me that's scarily likely — My #MNDiaries on my biggest fear & what needs done http://t.co/7Y1VWaG4Zi

Sunday, May 24th, 4:22 PM

Thanks for warm response, @ShonaRobison. Nobody should die without a voice. Have emailed. Lets meet & get sorted #MND http://t.co/hs4hqb0d8p

Sunday, May 24th, 2:17 PM

Wow... I could use one of these! #MND https://t.co/zPn6TnEY3r

Sunday, May 24th, 12:57 PM