Matt Ward

Living with (but not defined by) Huntington's Disease. My strength comes from my family & friends.

[Matt Ward @mattwardfromage]

I've just finished the 'Children of Strife' book by Adrian Tchaikovsky. It's amazing! I've now started reading a new (to me) trilogy by Adrian Tchaikovsky called: 'The Final Architecture' series. I've started reading the first book 'Shards of Earth'.

[Matt Ward @mattwardfromage]

I've just finished 'Children of Memory' by Adrian Tchaikovsky. It's great! I've now started reading the next book in the series: 'Children of Strife'.

The books in the "Children of Time" series are about the interesting long term effects of terraforming worlds. The books have a strong theme about what is the nature of biological and technological intelligences.

The books discuss ways that different animals/aliens/AIs might create very different civilisations and societies based on their different biological and technological starting points.

The books show how our initial assumptions and misunderstandings about different sentient intelligences can lead to fear and xenophobia.

The books are very positive and show how different intelligences can eventually all work together and support each other for the betterment of everyone. I definitely recommend them! 🙂

[Matt Ward @mattwardfromage]

I've just finished the 'Children of Ruin' book by Adrian Tchaikovsky. It's an awesome book! I've now started reading the next book in the series: 'Children of Memory' 🙂

[Matt Ward @mattwardfromage]

I've just finished the 'Children of Time' novel by Adrian Tchaikovsky. It's great! I've now started reading the next book in the series 'Children of Ruin' 🙂

[Matt Ward @mattwardfromage]

The next book in the Captive's War series by James S A Corey is still in the process of being written, so in the interim while I wait, I've started reading the Children of Time series by Adrian Tchaikovsky. It's great so far! 🙂

[Matt Ward @mattwardfromage]

Happy Mother's Day to my late mum Dawn. She passed away too soon from Huntington's Disease in 2011 ♥️

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.

[Matt Ward @mattwardfromage]

I've started reading a new book series by James S A Corey (pen name of Daniel Abraham and Ty Franck). The series is called "The Captive's War". I've just finished the prequel book "Livesuit" and now started the first mainline book "The Mercy of Gods". It's a real page turner so far! 😀

[Matt Ward @mattwardfromage]

Thank you everyone for your kind thoughts and supportive messages when I was feeling panicky and feeling like the HD demon was getting on top of me! It means so much to me and makes me feel less lonely! I'm in a much better place now thanks to you all 😀

[Matt Ward @mattwardfromage]

I've been having constant panic attacks all weekend. I think it might be to do with the book I've been reading 'Patient 1' and my own impending HD doom. I've stopped reading it for a bit. I miss the old days when I had someone to hug 😕

[Matt Ward @mattwardfromage]

I've started reading 'Patient 1' by the late Charlotte Raven, which she wrote with her neurologist Professor Ed Wild. Charlotte passed away from HD in 2025. Charlotte was an early participant in the clinical trials of the huntingtin lowering drug tominersen, which was dosed via regular lumbar punctures into the cerebral spinal fluid and is still showing promise with newly adapted clinical trials currently in progress with a pre-symptomatic cohort. I was also on one of these tominersen clinical trials.

[Matt Ward @mattwardfromage]

Merry Xmas to everyone who celebrates 🎄🎅

[Matt Ward @mattwardfromage]

I'll be honest, I'm struggling to find much hope these days.

[Matt Ward @mattwardfromage]

This weekend I've been getting back to reading using a combination of my good eye, making the text size on my Kindle app bigger and listening to the audiobook at the same time as reading the text. This works great on both PC and phone and everything synchronizes automatically 🙂

[Matt Ward @mattwardfromage]

Hi all - the sight in my left eye is still very blurry and I can't currently really see anything in focus with that eye. In the spirit of hoping for the best but planning for the worst, I've been setting up the vision accessibility functions on my PC and smartphone so I should be able to do most things on my PC and phone even if I'm left at the end of this unable to see clearly in both eyes.

[Matt Ward @mattwardfromage]

Hi all - I've been giving my distance vision a good test while outside and not wearing glasses and it does seem to be getting a little better. My vision in my left eye is still very blurry but the pain has stopped and the redness and inflammation are almost gone so the anti-inflammatory drops are definitely helping it heal properly.

[Matt Ward @mattwardfromage]

Hi all - just a quick update on my recovery so far after my recent operation to perform the clear lens extraction and titanium stent insertion. I'm taking anti-inflammatory eye drops four times a day. My left eye at the minute is still completely blurred as though I'm looking through thick transparent oil using that eye. Apparently it can be blurred like this afterwards for a couple of weeks or so, so hopefully things will improve at some point. At least I know now that there is no way I'll be able to have the right eye done until/if the vision improves in my left eye, because I can't be blind in both eyes at the same time for several weeks unless I move into a nursing home for the recovery period.

[Matt Ward @mattwardfromage]

I've just got back home from a post-surgery check-up at the hospital following the procedure that I had last week to replace my existing lens in my left eye with a new slim intraocular lens and also install two titanium stents in my left eye. The good news is that in my left eye the intraocular pressure is back down to normal levels and my headaches have stopped. The bad news is that the vision in my left eye is worse than it was before the surgery. I currently have 100% loss of focusing ability in my left eye. I can't even see the single biggest letter at the top of the standard eye vision test. They weren't even able to get any corrective lenses to work at all on that eye so to all intents and purposes I'm essentially currently blind in my left eye. The eye surgeons think it might be due to inflammation due to the operation (which was only last week after all). They've prescribed some anti-inflammatory drops to help my left eye heal but it's possible that I may never see again out of my left eye. At least my right eye can see fine currently. The eye surgeon has postponed my next operation on my right eye until they know what's happening with my left eye, which is good because I live alone and so I can't afford to be blind in both eyes.

[Matt Ward @mattwardfromage]

I've just got back home on the tram from my first eye surgery operation (clear lens extraction for acute angle closure glaucoma). It all went well. I've got a check-up in a week and then book in my second eye.

[Matt Ward @mattwardfromage]

Royal National Institute of Blind People quote: "Every six minutes, someone in the UK begins to lose their sight." I guess that includes me now with my angle closure glaucoma 😕