“do not underestimate smiling faces”

Mental Health Awareness Month. Huntington’s Disease Awareness Month. I’ve been ok, as you could have guessed by my absence. I have also been super busy, new job, studying etc. Life just gets in the way. I was told they have enough people in my age range for the study so they will let me know if another one comes up. This annoyed me, I just really want to help but I feel like no one really wants to help me. It’s like “You have your results. You’re not symptomatic. Get on with it.” But I want to speak to symptomatic people. I want to gain knowledge and experience. Even Scott seems to have pushed it aside. I leave books around and send him articles… “Thats good news” “you’re reading ANOTHER book on it” is all I get. If I don’t bring it , it isn’t spoken about and I am bored of being the only interested one. 

Mums MH hasn’t been great so we have been looking after her. She crumbled a bit but the Drs have said she is still non-symptomatic still! 60 years old, amazing. 

This month be extra nice – don’t underestimate smiling faces, we never know what they’re hiding. Happy MH & HD awareness month! xoxo


Research Programme

I have been enrolled into a research programme for Huntington’s Disease. Me and my mum will be 2 of 80 people in this study, due to our history with the disease. Every 2 years we will go for an MRI & other tests to monitor or development(or lack there of) of our symptoms. Another thing I’m super excited about! Me and mumwill be some of the first selected to go forward into clinical trials etc as part of this programme. Mum is 60 and still has not started to develop symptoms! Xoxo