One of my first fears when I was diagnosed was being alone in this fight. I don’t mean my family or friends just having this terminal illness. I thought I would be fighting alone with it but the internet is great and useful and now I’m meeting lots of good health people.
Talking to people on Facebook who have this disease just helps me and I can help them. Jody, Jason, Jo, Jon (all the j’s) and recently Gemma speak to me a lot of the time. Knowing what’s happening to them and me letting them know how I am getting on is good knowledge and great communication.
When I see their posts on their walls about things like falling down and sometimes what they are thinking about I send them a message and we have a good chat. Talking about this really helps me and hopefully it helps them too. It’s the best way to talk about how our disease is affecting us. Also finding out how they are being cared for is important.
We all raise our own awareness, fundraising and letting people know how we’re getting on. I don’t do this for pity I just want to share how my life goes and hopefully help people who are newly diagnosed or are now on the internet.
Being on your own with MND would be really bad, you need your own family carers, close by friends and you need to communicate with other people who have it. This would really help to keep your head held high and get on with whatever time you have left in this world.
I want to inspire people and let them know how they can live, not because I am special, just because of the things I’ve learnt in my life and how I deal with having a terminal illness.
Hopefully this will help people all around the world and if you feel like I’m helping you please leave a comment on this post.