Using the Neubie with MND: Defying the Odds
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Chris first came to see me in August 2024, in the hope that using the Neubie might help with the symptoms he was experiencing after being diagnosed with Amyotrophic Lateral Sclerosis (ALS), one of the most common types of Motor Neurone Disease (MND).
Most affected were his hands and back, which had both experienced progressive weakness and atrophy leading to difficulties with everyday tasks such as writing, tying shoe laces, holding cups, and even sitting or standing upright.
Initially, Chris and his wife spent 3-days working with me for an intensive block of treatment, consisting of 2-hours per day using the Neubie in various ways. Day 1 would focus on the hands, Day 2 on the back, and Day 3 on both.
After just the first 2-hour session, Chris arrived on day 2 reporting an improved ability to use his hands whilst eating breakfast that morning, particularly the right side, which had been most affected by weakness.
Incredibly, he had been able to drink his cup of coffee using only one hand, something which just the day before was not possible.
Chris practicing writing wearing the ‘electric glove’ attachment for the Neubie
On day 2 and 3, we continued our work using the Neubie to increase neurological connection and muscle activation in Chris’ upper limbs, core and back, culminating with some assisted walking in our final session.
Due to the weakness in his back, Chris would normally walk bent over at the waist, as the effort of holding himself upright was too much to sustain. Immediately upon starting to walk with assistance from the Neubie’s direct current, Chris reported a significant reduction in the effort required to stay upright, leading to him covering far more distance in one go than he was normally capable of. This alone was a fantastic achievement - one that we were all elated with.
However, even more remarkable than this, and to his wife and I’s amazement, Chris turned a corner and without warning broke out into a jog, in one of the most inspiring acts of defiance I’ve ever seen.
Chris defying the odds and running with assistance from the Neubie, despite struggling to walk upright normally.
4-days after our final appointment, Chris' wife sent me this image on WhatsApp, with the caption, “Lifting a pint with just the right hand - not possible before”. To this day, it’s my favourite message I’ve ever received.
Since our first intensive treatment, Chris has returned for several 2-day and 1-day intensives together with his wife, never failing to make their visit the highlight of my week. Chris continues to inspire me, just as all of my clients fighting this disease do, with his bravery in the face of adversity.
MND is a progressive disease, and so any improvements made as a result of using the Neubie are celebrated, no matter how small, whilst being responsibly kept within the context of dealing with a neurodegenerative condition. Outcomes such as Chris’ are not always possible in every case or in every session. We’ve had some appointments where Chris has arrived reporting no change in symptoms, and others where there has been an obvious decline in the weeks between our sessions.
Nevertheless, using the Neubie allows those living with MND to keep their muscles and the associated neural pathways as active as possible, providing a far greater stimulus to the body and brain relative to exercise or therapy alone.
Perhaps more importantly, using the Neubie also provides an opportunity to flip the script on the traditional narrative surrounding MND. In a space where patients are told that there is nothing they can do, Neubie Therapy defies this outlook.
Chris himself and many of my clients like him continue to defy this outlook every time I see them. In October 2024, Chris reached a personal best of 80m of upright walking (doubling his prior PB of 40m set at his previous appointment in September), despite reporting a noticeable decline in strength between those two dates. It’s one of the most incredible feats of determination I’ve ever had the privilege of witnessing, and the first time my job brought me to tears (all 3 of us!).
Chris walking a PB 80m despite feeling much weaker than his previous appointment.
And that is perhaps the most profound lesson I’ve learned so far whilst working with those with MND: my role, and the role of the Neubie, isn’t to always provide miracle results or improvements, but to instead provide a space for defiance, for determination, for bravery, and for hope. A space to flip the script, to work hard, to laugh, and to cry if needed. But most importantly, to make the journey a little brighter than it might otherwise have been.
Chris was the first client with MND I ever worked with. Getting to spend time with him and play a small part in his story so far has been an honour, just as it has with every other one of my clients battling this disease.
If you or anyone you know are living with MND, whether it be ALS, PBP, PLS or PSP, click the link below to book in for a FREE online video consultation to find out more information about how the Neubie could potentially help.