Weathering the Storm: the Importance of Allies on my Health Journey
The 1% Chance explores themes of hope, wellness and discovery in the context of MND / ALS. This article is for informational purposes only and does not construe medical advice. The author is not a healthcare professional. Please consult a healthcare professional about your own healthcare needs.
Transcript
Well, hey guys! Welcome to the 1% Chance, exploring themes of hope and wellness in MND - also known as ALS. My name's Graham Dargie - I was diagnosed with MND in 2023 and I’m on a mission to stay as well as I can in every way that I can.
Now, I often talk about the biology of MND - but today I wanted to share from more of a personal level - about why its been important for me to build a team of allies around me on this journey, the roles they play and how that contributes to my wellness.
Living with MND is, frankly, overwhelming. I prefer not to focus on the problems, choosing to keep my eye on the positives and the things I can do - but suffice to say, there’s not a single part of my day that isn’t more difficult. For me, at this time, most of the challenges are manageable but the relentlessness of the disease can wear me down - it just keeps on grinding away. Like waves crashing against a seawall, sooner or later, that wall is going to erode - and that can be both frustrating and exhausting. Because of this, it’s become more and more important for me to surround myself with people who share my “without limits” mindset—people who help me stay strong in the face of this constant pressure.
After I was diagnosed, I had a flurry of appointments with consultants, nurses, speech therapists, dietitians and psychologists as well as being offered support by MND Scotland. Now, all of these appointments, all of this support was offered with the best of intentions and provided by well-trained, well meaning professionals. Maybe it was a case of my own unspoken expectations going unmet - I mean, there’s nothing worse, right?! - but I quickly realised I was being treated as someone who was dying. The best things on offer were help to get my affairs in order, a less-than-lukewarm endorsement of Riluzole, a spot on a drug-trial, a free massage and the suggestion from the NHS dietitian to “eat more puddings”.
No, I thought! I’m still alive!
I was only 45 years old, having the best year of my life, making plans for my family’s future. As I exclaimed in one meeting - “I’m living!!”. Yet, nobody was educating me on how the disease works, how to support the affected systems, or offering strategies that might even give me a chance of prolonging my life.
Again, I realise this was all delivered with the best of intentions. I’ve no doubt that lots of good people had many meetings and consultations to come up with this pathway, but for me - and like I said, maybe it is only me - it just wasn’t landing.
I felt I was being pulled into a nightmarish new world - called MND - where the only things on offer were decline and death. So, I made a conscious choice to align myself with wellness and capability, not illness and loss. This was a battle for my body and my life - for the life of my daughter’s daddy. I quickly realised that the kind of support I thought would be on offer, wasn’t going to materialise. If I was going to build my health, support my body and guard my mind against what was to come, I’d have to find out how to do it in my own way.
The first place I looked for support, of course, was at home. My wife has been more supportive than a supportive thing. I’m an independent, self employed, creative - I’ve always believed there’s another way, a workaround, a creative solution. That mindset might make me difficult to be married to (I can admit that), but my wife gets me. She’s been an unbelievable, unwavering source of strength—the tripod to my camera, if you will.
Next, my Christian faith has taken on new meaning in this season. I’ve learned - and continue to learn - how to lean into it in new, deeper ways on this journey. I’ve felt the support of pastors and like-minded friends strengthen me on this journey.
Community has been important too. I’ve heard other people say they’ve gained and lost friends on their MND journey - I have too. People who look at me with pity have fallen to the wayside, while those who treat me with dignity and compassion have become invaluable. In the context of the diagnosis, any time I spend has to be meaningful, and proper conversations, even through my AI voice, mean a lot to me.
I work with a functional nutritionist - Jo Gamble - who’s help and support has meant more than I can put into words. Our sessions are positive and energising. She’s curious, asks great questions, listens, collaborates, and always brings practical, health-building strategies. Her tenacity is infectious and fuels my own intentions to press forward with my wellness intentions.
A few months after diagnosis, I began reflexology—a therapeutic massage focusing on the nerve endings in the feet. Wendy, my reflexologist, is deeply skilled and shares my belief in holistic health, shaped by her own journey. Reflexology boosts oxytocin—our feel-good hormone—and leaves me feeling relaxed, refreshed, and optimistic.
About a year after my diagnosis, I started working with a therapist, Gemma. As I’ve said, MND is a relentless grind and there are very few people I can be completely open with about my most vulnerable thoughts. The space to talk is worthwhile on its own, but therapy gives me much more than that . I see MND - in my case at least - as a nervous system issue. Years of being stuck in anxiety has taken a toll, trapping my cells in the Integrated Stress Response (ISR). If I am to give myself that 1% Chance of healing, I believe I need to find my way back to a state of safety, where my body can click into homeostasis and give itself the best opportunity to rest and repair - the way it was designed to do. Gemma helps me with strategies that I can use to regulate my autonomic nervous system and has been absolutely invaluable on my journey.
A few months ago, I had an assessment with a neurophysiotherapist to look at my gait. I began the session by saying: I don’t use limiting language. I don’t accept foregone conclusions. I place no limits on how well I can be. To my surprise and delight, Lesley, the physio, shared that mindset. I can't say enough good things about my experience with neurophysiotherapy and I’d almost go as far as saying that one session in particular was life changing.
My team of allies has been essential for me. To go back to the seawall analogy, they’ve been like steel reinforcements that have helped me stand strong in this storm. As ever, this isn’t a cure or a protocol, nor is it me saying you must do this. What works for you will be different, unique to your needs, and MND is more than one person should have to face alone. I encourage you to trust your intuition and build your own team of allies to help you stay strong.
I stand with you.
Thanks for listening. And remember—this podcast is for informational purposes only and is not medical advice. I’m not a healthcare professional. Please consult a qualified professional for support with your healthcare needs.