Monday, 19 June 2017

My Brave Mum.. and a Thomas Update.

Over the last few years my Mum has taken part in several research studies aiming to improve future management and care of Huntington's.  She knows that she's unlikely to see the benefits of these herself.. but she's keen to do everything that she can.  Generally these have been talking or co-ordination tests, with some monitoring of brain patterns etc.  Nothing too invasive or painful, just time-consuming.

On Sunday she left some paperwork with me that outlines the latest research project.  This requires a completely different level of involvement from the patients.  Basically she will go through a screening programme - then donate some of her cerebrospinal fluid (which surrounds the brain and spinal chord) for this latest research programme.  The CSF will be used to identify and evaluate biomarkers and pathways for HD (and other conditions).  It will also allow the researchers to develop a greater understanding of the Huntington protein, which causes HD, and some chemicals produced by the brain that are also thought to be closely associated with HD.

I'm popping round to their house tomorrow morning to find out exactly how serious she is about taking part.  Knowing my brave and determined Mum, I expect that she's pretty set on doing it. 

I think I've said it before... but I'm always super-proud of my Mum!!!

There's better news on the Thomas front too.  He's responded well to the increased level of pain killer and has lost the 'distant' look in his eyes.  I think (hope and have EVERYTHING CROSSED) that his time on the planet may be counted in weeks again.. rather than days.  He wanders round the house, cursing the heat and generally shouting at me for non-specific failures.  That's Thomas 'back to his normal self' for the moment.  Thank you (and purrs) to everyone who left a comment on my last post.

Hope you are all enjoying the weather!


  1. Your Mom is indeed a brave lady.

  2. So glad to hear that Thomas is feeling a lot better. I hope he can cope with the hot weather. I can understand how proud you are of your Mum for taking part in the research project. God bless her and you, a loving daughter. I'm so thankful for my own daughters who've supported me in different ways during my own recent health issues.

  3. Great news about Thomas, I've kept my fingers crossed for him so I'm really pleased to hear that the meds seem to be working, long may it continue. I can understand how proud you are of your mum. I also take part in research projects for bowel cancer, it's important that those of us who can, do. We never know how many people it may benefit in the future.

  4. Bless your mom. Brave is an apt description of her. I'm happy for your Thomas news.

  5. How thoughtful and caring your Mum is, such a brave thing to do for those who may benefit in the future from any findings. So good to hear that Thomas is having some better days I recognise the wandering around the house being unable to settle thing, especially in this heat and we are always suject to Max's 'chuntering' if things aren't to his liking:)

  6. Love to your brave Mum, as it is people like her that are paving the way for future procedures. Good for Thomas, still purring along. Take care Jan & huggles to all from Oz.