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'MND is my diagnosis. It is not who I am. I am still me'

A month post diagnosis and with a few more appointments over the last few weeks, it’s been a strange time to say the least. I don’t think its really sunk in as to the reality of the situation but I know that whenever something gets thrown my way, i’ll turn it into a positive. The last four weeks have seen me put my efforts into fundraising via my Go Fund Me page which has surpassed £6,000 - I’m well on my way to the £50,000 target!

I’ve tried to maintain a sense of normality by doing all the things I would normally do and that has helped in keeping me going. There have been wobbles along the way but I’m learning that I have to accept these and to allow those moments to pass me by, as they have. That being said, it has been hard at moments to keep smiling but I know that my positive mindset will help me.

MND is my diagnosis. It is not who I am. I am still me. I am not my diagnosis.

I’ve said it before but I’ll say it again, we are bowled over by all the amazing things people are doing for our family. In an age where it is often easy to assume that people are focused on themselves, we have been supported by so many people. Some of whom we have never met, and may perhaps never meet. It is the generosity of those around us and who are supporting our fundraising efforts that has shown us the kindness and compassion from others. As humans we tend to not want to rely on others but the situation we face has seen us learn that we must lean on others to see us through.

Much of the last month has seen plans being made for an ‘MND Spectacular Charity Ball’, an event I wanted to put together to help raise funds for the MND Association and to raise awareness of those living with the diagnosis of MND. Again, lots of you lovely people have shown your support in sharing details and helping us to put things together for an auction and raffle. More details to follow very soon!

If you see me, please know that I am comfortable talking about my diagnosis. I don’t want it to be the big shiny pink elephant in the room. I consider that by being so open about MND, I am able to perhaps normalise life with it and that I am still here. However, a few things I should perhaps point out;

  • I am not dying. I am LIVING with MND.

  • I know the outcome of my illness, I dislike being told who awful the disease is. I know this.

  • It’s OK to not be OK. I am always open when asked “How’re you?” - I don’t feel shame in saying that I may not be having a good day.

  • None of us know what the future holds - live in the moment and enjoy that time with those around you. Some things don’t matter. Gain perspective on what really matters.

For those following my Bucket List Instagram page ‘Sam & The Bucket List’, you’ll see that I am ticking things off the list at a good pace. There are still some things to organise, so if you can help or put me in touch with those to make things happen - please do!

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