I’ve talked a lot about what I call the “established narratives” that surround Motor Neurone Disease. These are the storylines that dominate the MND world.
But why are narratives so important? And what difference do they make in the context of a life-changing diagnosis?
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Last week, I had a meeting with a peer support and engagement lead from mnd Scotland. Before I tell you about that, let me give a quick recap of what lead up to it.
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Today, I discuss an idea that’s been around for more than a century. Something that feels relevant to my own journey with MND - It’s the old saying: - the terrain is everything.
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Whether it’s the systems we look to for help, or just how we approach our own health - this is a constructive encouragement that we can do better.
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“One of my favourite movies is Back to the Future, and, as a huge Star Trek fan, I know a thing or two about time travel. In fact, in my life I’ve spent quite a bit of time visiting both the past and the future. Let me explain…”
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“In simple terms, increasing the amount of omega-3 through diet and supplements could help my body push back against the disease. This was a no-brainer, an easy add, a small step that might make a big impact. And one of the first glimmers of hope on this crazy journey.”
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“Over time, this practice has become a non-negotiable in my day, and has helped strengthen my emotional and mental stability. In the midst of uncertainty, it has become a daily moment of pause where I can forget everything, and simply rest.”
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Sign the Petition to allocate annual funding to accelerate breakthroughs in MND research - https://petition.parliament.uk/petitions/715520?fbclid=IwY2xjawKgNs9leHRuA2FlbQIxMAABHoXTpD-IYO44Qrl3lxeAw7AIUiBIUOie-dpvgvFKN7YdPjW65hvIg5hApgPA_aem_XviAeyq2BTUMqgIiSZ6g_Q
“Contrary to our established belief, the wild isn’t lawless - it just follows rules that our individualistic culture no longer understands.
Rewilding is the process of restoring these natural rhythms on land, under the sea, and maybe even within ourselves.”
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“But for someone like me, and a lot of other newly diagnosed people – who are in their prime years. with a spouse and young kids in school - we can’t just go along with that. We can’t simply do nothing. We can’t give up hope.”
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In the midst of uncertainty, could we retrain ourselves to find moments of safety and unlock new pathways to healing?
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Sign the Petition to allocate annual funding to accelerate breakthroughs in MND research - https://petition.parliament.uk/petitions/715520?fbclid=IwY2xjawKgNs9leHRuA2FlbQIxMAABHoXTpD-IYO44Qrl3lxeAw7AIUiBIUOie-dpvgvFKN7YdPjW65hvIg5hApgPA_aem_XviAeyq2BTUMqgIiSZ6g_Q
“Emotional nutrition - I love the term. But how can we work this to our benefit?”
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Sign the Petition to allocate annual funding to accelerate breakthroughs in MND research - https://petition.parliament.uk/petitions/715520?fbclid=IwY2xjawKgNs9leHRuA2FlbQIxMAABHoXTpD-IYO44Qrl3lxeAw7AIUiBIUOie-dpvgvFKN7YdPjW65hvIg5hApgPA_aem_XviAeyq2BTUMqgIiSZ6g_Q
“MND isn’t a crack you can paper over. It changes everything — breaks everything. And if society says broken is bad, what does that make me?”
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Sign the Petition to allocate annual funding to accelerate breakthroughs in MND research - https://petition.parliament.uk/petitions/715520?fbclid=IwY2xjawKgNs9leHRuA2FlbQIxMAABHoXTpD-IYO44Qrl3lxeAw7AIUiBIUOie-dpvgvFKN7YdPjW65hvIg5hApgPA_aem_XviAeyq2BTUMqgIiSZ6g_Q
"Some people say that 1 person can’t make a difference. In the face of overwhelming challenges like climate change, war and even chronic illness, maybe that’s a fair assumption.
But history is full of individuals who did make a difference, and whose influence continues to ripple out years, or even decades later."
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"As I wearily made my way downstairs, something weird happened: like a lighthouse beam emerging from the fog, a sequence of words faded into my mind.
It felt like a gift from my neurones a blessing from the incredible biological circuitry that has become the fulcrum of my life. While worrying about them had ruined my night, they repaid me with a way to reboot my day."
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Sign the Petition to allocate annual funding to accelerate breakthroughs in MND research - https://petition.parliament.uk/petitions/715520?fbclid=IwY2xjawKgNs9leHRuA2FlbQIxMAABHoXTpD-IYO44Qrl3lxeAw7AIUiBIUOie-dpvgvFKN7YdPjW65hvIg5hApgPA_aem_XviAeyq2BTUMqgIiSZ6g_Q
"My limiting beliefs came to a head in my mid-30s, when I realised I was talking to myself with a harshness I’d never accept from others. The seed planted years prior had grown into a suffocating ivy, until I finally realised; if thoughts and words can limit, maybe they can also unleash?"
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"On this journey, I’ve discovered some surprising connections. - Today, I want to talk about a fascinating health connection between the sun and our cells."
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“So, what if I looked at this another way? I can’t deny the repeating pattern of loss, change and adaption. But I can choose how I frame it. What if, instead of seeing each physical change as a loss, I treated every adaption as a victory?”
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"Imagine a place called MND Town, population 5000. Every day, six residents die and are replaced by six newly diagnosed citizens. The government knows about MND Town, but takes no action - after all, it’s “only” 5000 people."
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Just letting you know about the new name for the podcast.
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"From the moment of diagnosis, I realised quickly that if I didn’t find something to hold on to, I might fall and fall into a place of despair that I might not be able to get out of. I realised over time, that a life without purpose...would be no life at all."
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