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Ultra processed food is bad for you – for your health, happiness, weight, gut health, cancer risk etc. In short, if you put healthy food in your mouth it will improve your life. You can get healthier. This is a super good way to start. Ultra processed food is very loosely described as any food in plastic wrap that has one or more ingredients you wouldn’t normally find in a pantry. Osteoporosis prevention I consider Osteoporosis to be a scourge of old age, as it causes so much pain and suffering. It is so common, yet so much can be done to prevent it. Years ago I asked to have a bone density done – I’m a light weight and had an early menopause, both of which increase my risk of it. The bone density scan in my mid 50’s showed osteopenia (a precursor for osteoporosis), so I asked my GP to have an Aclasta infusion. I had to pay for it, but it was money SO well spent. I have had three infusions now and my bone density is better than average for my age. I also take monthly Vitamin D on prescription. Way better than a hip or vertebral fracture in a few years! I can keep riding my E-bike now without worrying about falling off and breaking something. Education After years of denial about my condition, I decided to embrace it and learn as much as possible. Surprise surprise, scientists all over the world have not been ‘doing the ostrich’ like me, but have been dedicating their careers to finding ways to help. Huge thanks to them. So instead of being thoroughly demoralised by attending my first annual DM1 USA remote conference via Zoom as expected, it was a WOWmoment! Lots of research is currently being done by multiple drug companies on medications that can act at a cellular level to reverse the symptoms of DM1, and potentially even eventually cure it by the use of gene editing. How exciting! The Myotonic Dystrophy Foundation in the US has excellent webinars, drug company presentations, and online information and resources. There is a wealth of fascinating information on this website. https://www.mda.org/ Principle 3: Teamwork Nigel Latta’s third principle. ‘The best things we ever do we do with other people’. As one becomes less able, we inevitably rely on our team more. This will look different for everyone. One thing for sure, it is much more rewarding for others in the team to help if the person they are helping is appreciative and positive. My best advice to help you achieve this is to read Nigel Nigel's book. It is full of wisdom. He calls optimism a super power, and discusses the benefits of an optimistic mind and how to achieve it. He says “Try to be as kind as you can as often as you can. That’s where the real comfort lies”. Drug trials in New Zealand We are so fortunate to have Associate Professor Richard Roxburgh, and Neurogenetic Research lead Miriam Rodrigues at Auckland University, and many others working tirelessly to help people with neurogenetic conditions. What mahi they have done. Huge thanks to them. Due to their consistent hard work over many years, kiwis can now benefit from the Neurogenetic Registry and Biobank. To find out more go to: Neuromuscular Disease Registry poster https://mda.org.nz/wp-content/uploads/2023/09/Rodrigues- poster-final-NMDR.pdf They are also currently conducting the END-DM1 natural history study, which also helps identify people eligible for drug trials. Getting the equipment needed to take part in the END DM1 study has enabled New Zealand to be one of few international centres to take part in clinical drug trials, as the same equipment to measure muscle strength and function is used. I am currently participating in a clinical trial for myotonic dystrophy. Please contact Miriam Rodrigues if you want further information. It is not easy having a diagnosis that causes pain and suffering in so many ways. I hope you find a bit of comfort and inspiration in this article. By Denise Bentall LIVING WITH PURPOSE So instead of being thoroughly demoralised by attending my first annual DM1 USA remote conference via Zoom as expected, it was aWOWmoment! SUMMER 2025 InTouch | 11