Matt Ward
Living with (but not defined by) Huntington's Disease. My strength comes from my family & friends.
Joined Jan 2024
Hi there - I started doing a video diary on YouTube back in 2012. There are currently 146 videos there so far 🙂 I had stopped doing them for while but I'm starting them up again 🙂 I've got a new video in production and I'll post here when it's finished.
Here is the link to my YouTube channel and all the previous videos in case you wanted to have a look:
https://youtube.com/@mattwardfromage
Cheers - Matt
I've got myself an early Xmas present to cheer myself up. It's a voice controlled bean to cup Siemens EQ900 Plus coffee machine 😀 I can use my voice to turn it on and tell it to make me an espresso ☕
That's my ongoing head/neck piece looking awesome! Many thanks @chitayart at @hiddensorrowstudio ❤️
I've just finished reading The Expanse series of books by James S A Corey. It's a great read and I definitely recommend it, especially if you like sci-fi with a little horror. The TV show is fantastic too.
I'm thinking of reading the Hyperion Cantos series by Dan Simmons next. I've also heard good things about The Remembrance of Earth's Past series by Cixin Liu (first book is The Three-Body Problem). Has anyone got any other sci-fi/horror recommendations?
"The AI programme allowed Wexton to make a clone of her speaking voice using old recordings of appearances and speeches she made in Congress. Wexton appears to be the first person to speak on the House floor with a voice recreated by AI."
This technology will also be great for HD patients:
Lawmaker uses AI voice clone to address Congress
https://www.bbc.co.uk/news/videos/c728q850e5do
Quote: "Virginia Congresswoman Jennifer Wexton used a artificial intelligence (AI) programme to address the House on Thursday. A year ago, the lawmaker was diagnosed with progressive supranuclear palsy, which makes it difficult for her to speak.
I've been struggling a lot for the past 6 months so I've taken some time out from my masters (MSc in Mental Health Science). I'm studying at the Open University here in the UK. I told them about HD and they have been very understanding and flexible.
As I'm all alone now, I'm just doing what I can to stay alive until they find a cure for HD so that I can then get back to my life. Unless the hole in my brain gets too big too quickly and then HD will kill me the way I watched it kill my mum and my granddad.
Life is hard enough when you've got a terminally expanding hole in your brain thanks to Huntington's Disease. It was invaluable having support from my family (before I was unexpectedly divorced). I've been alone and living on my own for the past six years which has made my life immeasurably more challenging. Facing the darkness each day is difficult enough with HD even when you've got a good support network.
Spent all morning battling my way out of bed again. Same demon as always: HD. HD said: I'll kill you. I said: Not today 💪
@TheresaVermont Hi Theresa - sorry to hear about the loss of your brother-in-law. Neurodegenerative conditions are very cruel.
This is some interesting news. A study has found that people recently vaccinated against tetanus are less likely to be diagnosed with Parkinson's Disease (PD) later in life. This suggests that an infection with tetanus bacteria could be one of the possible triggers involved in the condition. Additional work is planned to understand this situation further.
This is a more lengthy (40 min) look at the Huntington's Disease journey of the character Dr. Remy "Thirteen" Hadley, played by Olivia Wilde, on the show House M.D. #HDawarenessmonth
This is a clip from the show House M.D. The character Thirteen, played by Olivia Wilde, has Huntington's Disease #HDawarenessmonth
We're all in this together #research #cures #cureHD #HDawarenessmonth #HuntingtonsDisease
Matt Ward
Living with (but not defined by) Huntington's Disease. My strength comes from my family & friends.
Joined Jan 2024