We're all in this together #research #cures #cureHD #HDawarenessmonth #HuntingtonsDisease

Here is a fantastic message from the Huntington's Disease Association (HDA) raising money and awareness for HD families. This is the summary:

"Alison Steadman presents an appeal on behalf of the Huntington’s Disease Association, a charity that works to support anyone affected by the disease, from entire families to employers and healthcare professionals."

https://www.bbc.co.uk/programmes/m001ysrc

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: https://en.hdbuzz.net/362

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: @chitayart) at Hidden Sorrow Tattoo Studio (Instagram: @hiddensorrowstudio).

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.

https://www.newscientist.com/article/2417922-pet-dogs-smell-parkinsons-disease-with-almost-90-per-cent-accuracy

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 (Instagram: @hiddensorrowstudio).

I have a collection of medication that I take when experiencing the pre-attack aura, which has about a 50% chance of stopping the migraine at that point. If luck isn't with me though, then the migraine attack then hits with full fury and I can only just lay down in the dark until the attack has finished.

For me, my sleep is also negatively impacted by loneliness, heartbreak, depression and social isolation. Because life has apparently decided that I can't even have the slightest bit of happiness, I also suffer from migraines with aura - I have done for many years. I take a daily preventative medication, which helps reduce the frequency of attacks (I am currently having about two migraines a week).

I used to track my sleep using a wrist-based fitness tracker but since I now have both arms completely tattooed this has stopped wrist fitness trackers from being able to detect my heart rate! I now use a ring-based finger fitness tracker instead. All my fingers are also tattooed but there is just enough skin visible there to allow the finger tracker to work properly.

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 a sleep polysomnography which helped identify how my sleep cycles are being negatively impacted by HD symptoms and design a sleep hygiene approach to help minimise this.

The article below discusses the relationship between disrupted sleep patterns and migraine, and how they can affect each other:

https://migrainebuddy.com/the-connection-between-sleep-patterns-and-my-migraine/

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. This information is casting some new light on how our brain develops in childhood - https://www.newscientist.com/article/mg26034663-700-mutation-behind-huntingtons-linked-to-higher-childhood-intelligence/

Another interesting article - Stop Drinking, Keep Reading, Look After Your Hearing: A Neurologist’s Tips for Fighting Memory Loss and Alzheimer’s

https://www.theguardian.com/science/2022/aug/17/stop-drinking-keep-reading-look-after-your-hearing-a-neurologists-tips-for-fighting-memory-loss-and-alzheimers

An interesting article. How music heals us, even when it’s sad, by a neuroscientist: https://theconversation.com/how-music-heals-us-even-when-its-sad-by-a-neuroscientist-leading-a-new-study-of-musical-therapy-214924

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 may slow Parkinson's symptoms for years, study finds: https://www.bbc.co.uk/news/health-67208745

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: https://theconversation.com/how-loneliness-changes-the-way-our-brains-process-the-world-214668

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 about HD so they visited their local Huntington's Disease Society of America (HDSA) to find out more about the condition.