Good morning world and fuck off Huntington's Disease #FuckYouHD

Just blowing the cobwebs out and trying to stay alive until they find a cure for HD 💪

An interesting HDBuzz article about detecting huntingtin protein in tears. There are no shortage of tears around here as I usually cry myself to sleep at night due to depression and loneliness: en.hdbuzz.net/362

Cry your eyes out: detecting huntingtin in tears - ift.tt/jAbr4CT

I had another tattoo session today. We've finished my chest piece! The chest piece artwork highlights my ongoing battle against my mental health demons. We've also made a start on my full neck piece 🙂 The work has been done by amazing artist Wilfred Chitay (Instagram:…

Wow - dogs really are amazing! - Pet dogs smell Parkinson's disease with almost 90 per cent accuracy. Pet dogs of various breeds have been trained to detect smells related to Parkinson's disease, potentially offering a new approach to diagnosing the condition -…

Getting tattooed reminds me that something beautiful can come from pain. It makes me hopeful that one day I shall be happy again. I had a tattoo session yesterday continuing the work on my chest piece by artist Wilfred Chitay (Instagram: @chitayart) at Hidden Sorrow Tattoo Studio…

Like many people with HD, especially in the earlier stages of the condition, my sleep is disrupted due to reduced melatonin production and chorea movements at nighttime impacting REM phase sleep. I wake up exhausted each morning even when I have been asleep for a long time. I had…

Apologies, this New Scientist article requires a subscription to read the complete article. Thankfully, I do have a subscription and so I shall summarise it 🙂 Research indicates that the mutation that causes HD also seems to increase intelligence in people under 20 years old.…

Another interesting article - Stop Drinking, Keep Reading, Look After Your Hearing: A Neurologist’s Tips for Fighting Memory Loss and Alzheimer’s theguardian.com/science/2022/a…

An interesting article. How music heals us, even when it’s sad, by a neuroscientist: theconversation.com/how-music-heal…

This is part of the reason why I took up kickboxing years ago - all martial arts are great neurophysiotherapy for HD (and similar conditions). It helps improve balance and coordination, as well as proprioception (knowing which bits of the body are doing what in 3D space). Tai chi…

After six years (so far) of living alone and the associated social isolation, I found this article quite interesting discussing how loneliness changes the human brain: theconversation.com/how-loneliness…

I'm wearing invisible dental braces - can you tell? 🙂

This is a photo of myself and my late mum, Dawn, when we lived in New Jersey, USA. I'm about 2-3 years old and Dawn is about 22-23. It was around this time that my mum's dad passed away from suspected Huntington's Disease. This was the first time that my mum and dad had heard…

After being divorced twice, living alone for the past 6 years and being in the early stages of HD, I understandably struggle with depression. I'm a voracious reader. When I'm battling negative thought patterns, I find reading to be very cathartic. Reading reminds me that, in…

Webinar tomorrow with Roche 🔬 Why do we need a second Generation HD trial?
➡️ Register now! bit.ly/RocheWebinarEHA
📅 January 9th at 6 pm CET

Professor Sarah Tabrizi (UCL) and Doctor Peter McColgan from Roche will answer your questions about the importance of this trial.