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Tuesday, December 7, 2021

I have made psychological leap to use a wheelchair but love shown by Kevin Sinfield makes me feel lucky

You do not ask for this help. People just give it to you unconditionally. Take my good lady wife. She has not had a good night’s sleep in about eight months now because I am like an alarm clock that goes off every two hours asking to turn me over or pull the covers off. She dutifully obliges every time. 

That is why I decided to let her and the boys go to the Scotland v Japan game without me. Even before I was diagnosed, I could be a pain to live with, so it was right she gets the odd day away from me. Although I was slightly surprised, given that she said she would be back by 5.30pm and did not come through the door until the clock had gone past 9.30! 

Another big development, in part because of her, is that I have started using a wheelchair. I can still walk holding on to her, but it just makes it much easier for us to get about. It has taken a bit of a psychological leap for me to get used to it. I have always wanted to do as much as I possibly can, and I hate to think I am giving in. 

But I have tried to flip it around and say if it allows me and the good lady to get out a lot more, then that has to be a benefit. Before she used to bring an adapted office chair, so when I went to watch the kids play rugby she would have to barge it in the car and then put it in the stands. Now we have a lot more freedom to get out and about. Probably the biggest benefit of all is that I can afford to have one or two more drinks without the fear of me toppling over. 

Government’s £50m pledge a drop in the ocean

The biggest news of all, however, is the Government’s pledge to commit £50 million in funding towards MND over the next five years. Really, it is a drop in the ocean compared to money devoted elsewhere, but it shows that the Government is serious about helping to find a cure to MND and it provides a lot more certainty in our planning. Previously one of our biggest issues is that we could not offer PhD students and other scientists long contracts, beyond three years, because we did not know the funding was there. This will allow us to get the best brains on board. 

I think it will also give hope to the MND community everywhere that there’s a finishing line in sight. One of the hardest things about living with MND is that you do not know what timescale you are working to. Now we have an end point in sight. We have also told the Government that we will match the funding, so that gives the charities and the fundraising team a real focus to raise money. 

Kev has made an unbelievable start to that, and now we need to continue that momentum. I am going to text Gary and Rob to tell them to dust off their trainers!

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