6 weeks ago, I was told by the Dr that I test Gene Positive for Huntingtons Disease. 43. That is my CAG Repeat.
“Huntington’s disease, which is often called HD, is an hereditary disorder of the central nervous system. It used to be known as Huntington’s Chorea or HC. Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms. The disease affects both men and women.” https://hda.org.uk/hd
I’m not sympotamatic, yet. I am only 22 though, symptoms could develop anytime now, I just have to wait it out. I inherited the gene from my mother, who inherited it from her mother. Luckily, I suppose that’s the right word, no-one in my family has yet to of developed symptoms before their 60s, so they have all lived a relatively full life. Mum still hasn’t developed symptoms and she was 60 on March 1st, so I have my fingers crossed. I’ve known about the disease since I was about 13 years old, so I am not surprised nor am I upset or ashamed by the diagnosis. However, I have never dealt with the disease first hand, so no doubt I’ll be in for a shock when it does eventually start to affect mum, or myself but for now I will continue to go about my life as I was before it was given to me on a piece of paper and I will continue to enter into the research programme to try and help others – my Dr’s are intrigued into my family’s history with the disease, she said she’s only encountered about 4 other families that have such late development of symptoms, so I’m hoping me and mum can help, we can only try. I will try to be here for anyone who needs it, although I’ll probably be the one with all the questions about how you guys and how you’re all so brave and brilliant. For now I am going to continue with trying to keep my faith bigger than my fear, wish me luck.
All my love,
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
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
I have started making a garden! I have made a planter for some of my plants. We bought cabbage plants, sugarsnap pea plants and a herb selection. We have planted tomato seeds – cherry and salad, spring onions, runner beans, carrots, mixed salad leaves, little gem lettuces, strawberries and chilli plants. I also have 10 sunflower plants trying to grow. As well as all this I still have a selection of oriental salad leaves to plant along with 50 flower bulbs, and a selection of pretty ground covering flowers. Me and Scott have spent our time searchimf biologivL ways if deterring pests and how to build butterfly houses and hedgehog homes! I’m not entirely sure what has spurred this sudden interest in gardening and growing of things but it’s so much fun! Even if he isn’t loving it, I’m certainly enjoying it! He seems to be getting fed up of me talking about it haha. Oh well. Here is a picture of my half finished, sort of rockery & a few of my plants, lol.
I’ll update soon! Xoxo
Monday. I don’t usually work Monday so I don’t get this start of week downer. I have a productive day, spent with my partner & his little girl, walking in the woods, painting, baking etc. Today I have to go to work and I get Friday off instead. Which doesn’t really help me. BUT I will make good choices today, I’ve already made lunch – speedy lentil curry with courgettes, carrots and onions and a fruit salad of pear, grapes & strawberries. I’ll buy a yogurt at work.
I’m in a better headspace than last week so fingers crossed it stays that way. I did not make good food choices last week and it will definitely show on the scale this evening at weigh in. Oopsy. I was so annoyed aty last weeks weigh in, I was 100% on plan and a maintained for a 2nd week running, so I lost my way with it a little last week, I’ll get back on it as of now. Have a good Monday guys, xoxo.
I just don’t have one. I came back to work yesterday hoping I would feel refreshed. I don’t. In fact, work is probably my main problem. It really wears me out. It’s so not the job. The job is not tiring. It is most definitely the people, for many reasons I can’t really explain. I just can’t explain anything to in any way to make it all make sense. That’s hardest thing I think – not even being able to explain how I feel. I don’t think I feel sad, just a little lost. But a little is slowly turning into a lot. I am quite tempted to just book a weekend away somewhere alone, so no one can get hold of me. Just to think, or sleep and both, lol. Oh well, better get on with my day.
My current book obsession, I absolutely love this book, people might ask “why read pretty much into what the future holds for you?” Why not? I am going to have to deal with it eventually, why not grab some first hand experience early on?
I should probably be scared. I’m not. I’m pretty nonreactive about the diagnosis itself but it has made me more self aware. I pay attention to my moods, I take a deeper breath before I let something annoy me. I live better now. I make better choices. I’m excited to try and help people, because that’s what I get to do now that they’ve diagnosed me. My family history with the disease allowed my Dr to enter me straight into research programmes to allow them to use me/my blood/my MRI’s in research… I’m not sad about any of it.
Not having many good “mental health” days recently and I couldn’t tell you why. So today that is what I am trying to focus on before I go back to work. Colouring in, catching up on my TV programmes, bubble baths & good comfort food – today it’s leftover pasta and red sauce from the lasagne we made last night and loads of cheese, with a bowl of speedy fruit salad! Doesn’t ever look pretty but always tastes bomb AF.