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Campaign For My Brain

Campaign For My Brain www.change.org/stopthemockery
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07/04/2023

Happy Easter from CFMB HQ….. I need to get back into social media, I’ve had a crazy 6 months and have not been able to keep up! But mum is doing great after a recent chest infection and the sun is shining for her ☺️🙏🏻

29/12/2022

Every Christmas we get to share with HRH is a special one 🎄

02/12/2022

Lovely evening tonight with my queen, and birthday girl HRH! Every birthday is a milestone and I’ll forever be grateful for every one we get to celebrate 👑🙏🏻

09/11/2022

Care should be personalised and focused on who the person IS, even with their disease, to fulfil their life as best as possible during their battle. Life is difficult enough with diseases like Huntingtons, Motor Neurones, Dementia… and that’s why I love helping family’s understand the health and social care system, so they can advocate for their loved ones, and have some breathing space to deal with the anticipatory grief that they carry around like a heavy back pack! Here is my mum, sent to me by my cousin! I haven’t changed much! And nor has mum’s smile!

20/10/2022

Been far too long since this magic smile has been on my grid! She’s brightened my day for sure and loved a visit from a furry friend today!! Her visit will be on BBC points west at 18:30 tonight if Politics doesn’t over hall it.. if not it’ll be tomorrow! On the rainy days you only need a bit of sun to glimmer or appreciate the rain on your skin to start over ☔️🌦

01/09/2022

A very special post for a special girl, and her Dad. If you’re in the HD community, there is no doubt you’ll be following this little pocket ticket . I’ve never met someone with so much genuine energy and desire to keep life fun, keep contributing to the HD community and have such a fresh raw and honest outlook on everything . Her Dad, he’s always been a face I’ve loved seeing on the grid! Ashley has supported him amazingly in his HD journey and has faced the same barriers many do, hence the blog name. we are all thinking of you and your family, and heartbroken to learn that your Daddy (I have to write it like that and I can hear your Irish accent saying it 😘💔) has passed the rainbow bridge and passed away. Love you Ash! Don’t lost your spark but do take time out for you, we’re all here for you in the community when you’re ready for your crazy tik toks again 🌷💚

14/07/2022

One of the biggest things I’ve noticed since the pandemic, is how much connection is important, and that all important sense of touch (behave…!) connection with friends, family, even a chat at the supermarket checkout. Life became lonely for so many in the pandemic, and still many are feeling that isolation still. I try to sprinkle some love and brightness whenever I’m with a patient with random chats, discussing their photos, or just talking ‘normal’ to break up their day if they seem lonely. Sometimes a positive interaction can have a great impact on someone’s day and mental health ❤️ I find psychosocial studies so interesting!

08/07/2022

Well this is a new one! It’s fair to say it’s been on and off a career I thought might have ended in the last 3 years of struggling, but im still proud to a paramedic and I try to be the best one I can be, despite being Jack of all trades… master of CPR only…
I have SO many people tell me it’s their dream job and “should they do it”, and I see so many students come through and leave within a few years, or decide not to progress to paramedic all together!
If it’s a career you’re serious about, then it’s important to know…
- You need to be prepared to sacrifice ‘family life’, school runs, parties, weddings, birthdays… Christmas… bank holidays..
- You need to have patience, because you will be sent mostly to thinks that aren’t emergencies! Sore wisdom teeth, mental health complaints, people stuck for social care and no where to turn…
- You need to have some mental ‘strength’ (notice i despise the word ‘resilience’) and recognise that you’re probably sacrificing your mental health long term, your physical health from working shifts and stressful environments…
- You’ll likely lose friendships because it’s working anti social hours!
- You’ll see the best in the public, but also the worst!
- You will rarely be home on time!
HOWEVER
You’ll be the person holding someone’s hand for their last breath at times, and you’ll be present when new life enters, you’ll be a shoulder for those who have no where else to turn and you’ll see some funny s**t a long the way (wililies, bo***es, scrotums, weird piercings…..)
HAPPY paramedics day, I’ve made the bestest friends in the world in this job ❤️🚑 and it’s this job which helped me get the right care for Mum, and start this campaign! **photos taken and posted with permission / consent**

22/06/2022

The last week has been strange. Mum’s had moments of really clear words. Verbalising more. Engaging more. Hugging back, holding your hands. She’s been more “Mum”, and it’s been amazing to have these little pockets of her light up.
We have no idea why! A large part is she hasn’t needed as many sedative mediations to keep her calm, so naturally she’s more alert. No recent infections which always send her off normal.. but maybe it’s Chester being around, and the joy he’s bought!
Maybe it’s her amazing team of carers spending their day making her giggle and treating her like a queen!
One thing for sure is a visit from one of the carer’s newborn made her evening ❤️❤️🌻
“Treat a disease you win or lose, treat a person you’ll win every time”

07/06/2022

Dogs can sense so much! Mum is the only person he falls asleep on. Last night the carers text to say he was asleep in mum’s hands on the bed! He’s provided Mum with distraction and love, and sensory wise lovely soft warm chubby fur to hold and cuddle (when I’m not available 🤣) It’s such a difficult task keeping mum calm and relaxed, and Chester has been great assisting!

04/06/2022

Welcome Chester ❤️🌻 Look after HRH, keep making her smile, and she will look after you with her love like she did for us! WARNING… many cute puppy photos wil be coming. The power of animals for mental well-being is so amazing!

22/05/2022

We often dismiss how intuitive children are, or what they might quiz or think of! Rosa loves hearing about what Nanny used to get up, her love to dancing, country music. She loves this silly song called “Mr Mom” because i told her Mum and I would belt it out when I drove her back from line dancing! Rosa asked if she could help feed nanny on Friday. She knows it’s important and likes to help. I cannot wait to give young carers some well-being help later this year! If you want to donate to the well-being project there’s a link on the site!

15/05/2022

Over 10 years apart, same big grin. Dogs are healers 🧡 Welcome Chester, new addition to the famalam in two weeks!

29/04/2022

It doesn’t matter how much you know the inevitable or what “May” happen, you worry about losing someone the moment you know they have a condition like Huntingtons disease. Mum has done so well bless her to recover from covid as quick as she did, as we really did have 3-4 days and nights that were worrying. I’ve been so exhausted the last 10 days and I know a huge part of that is the emotional toll of wondering “is this it”. I’ve suffered tremendous amounts of anxiety since finding out about mum’s illness at 14; and whilst over 10 years in the ambulance service makes you accept death differently, it switches to a huge feeling of responsibility when Mum is unwell! I don’t think any of us are prepared no matter how much we tell ourselves we are! Anticipatory grief continues to baffle me and throw me off course! As usual SO grateful for science and the covid vaccine, lush to see mum out and about and well 🥰🎉

25/04/2022

It’s been a long 10 days at HRH quarters! HRH had COVID over Easter and very much struggled bless her, but is now doing great and back to her cheeky self! There is no doubt that things would have been different without a vaccine, we are so fortunate to have science, research and the NHS! Thank you so much to her amazing carers who covered shifts tirelessly even when dropping like flies with covid themselves! Unsung heroes I tell ya ❤️

17/04/2022

Easter 2017.. feels so long ago, but also 5 years to go from how Mum is there, to now.. she’s unable to do anything for herself, can only say a few words and they are strained. Weirdly, for us, she actually got easier to manage when less mobile. Her Huntingtons made her unable to assess the risk to herself, and we had to keep a 24/7 watch, as she was road runner on her feet! Except she was road runner with no balance or perception! For many people it differs. Less independence means more care physically needed to complete tasks, but for us it meant we didn’t have that constant anxiety when we heard a bang. Life goes by so fast! Today I AM GRATEFUL for another Easter with HRH. I know many aren’t that lucky. Happy Easter 🐣

15/04/2022

“I wish everyone could meet Alex – he has been my inspiration all of my life. I wouldn’t be the person I am today if it wasn’t for my amazing brother. Being brought up I didn’t realise my brother had a disability, this was just part of him. He is Alex to me!” Heather Britton. Thank you for giving us your time free of charge to help us get this book to life! If it changes one persons way of seeing themselves or others, it’s worth it! The next generation need us to make inclusion happen ❤️

11/04/2022

HRH basking on one of her Sundays ❤️ it makes you remember gratitude when someone loves a Sunday, as they know they will definitely go outside or do something ☺️ we take so much for granted. I do gratitude practice with Rosa every night I have her, and I find it so helpful for keeping my feet on the ground

29/03/2022

You don’t often hear from the other part of CFMB, who works silently behind the scenes! Catrin paid tribute to her Dad yesterday, who passed away 8 years ago after a difficult battle with Huntingtons disease. His struggle is 50% reason for CFMB! Here’s her post about grief..
“Grief is a strange thing. Somedays it hits you like a brick wall. 8 years on and it doesn’t get any easier.
I often look back at the memories left by Dad’s friends at his funeral, little note cards of anecdotes, tales and friendship that they remembered and it always makes me question if he realised how much he was thought of.
Why does it take death for people to talk about their favourite memories, moments and stories, why leave it until they can’t hear it?
Every day tell your loved ones how much they mean to you, because tomorrow that chance may never come.
Flynn and I celebrated today listening to Van Morrison and talking about his Taid.
His wish was that his Taid would come back so he could meet him and I know Dad would have absolutely loved him! 💔”

27/03/2022

Happy Mothers Day to my queen… HRH! You may not have been able to be a typical ‘mum’ for a long time but you did it whilst you could and you were the best. Covid has separated us once again but I will see you very soon to wind up Dad, perv at Ross Poldark on the iPad, and fight over Zac Efron and Hugh Jackman in the greatest showman ❤️😘

22/03/2022

Sunshine makes me happy, it means we can take mum outside far easier, less planning and enjoy little moments. Mum had a Sunday with her grandchildren and my sister, it’s the simple things that make the biggest difference like quality time when you know it’s precious / limited.

20/03/2022

Getting young carers to open up about how they feel is difficult, they often have protective barriers over their loved ones, or depending on age, don’t really understand how they feel. One of the 2022 projects is ‘worry bags’ for young carers, it’s a slow process raising funds but we are trying. I’m Hopton to have more resources on the website at some point in helping young carers understand their emotions and work through them! Thanks .doodling.dad for the animation.

13/03/2022

My favourite Sunday! Organising round the clock care is so tough, and anyone in the care industry knows this too well. This has been made harder with covid, and I’ve had to make the difficult decision to leave my community paramedic role and remain frontline for part time hours, so I can pick up what’s needed at mums. This means finding bank work… zero hours or anything to fill the gaps to financially sustain it! Being a Carer is so much more than people realise, the responsibility is enormous. Luckily we have an amazing team of girls who treat mum like a queen (she is HRH after all) and days with mum are always an amazing way to ground yourself and find gratitude. Happy Sunday !

08/03/2022

She’s the one always smiling even if the day has been hard, the one who never grumbles, the one who beams with gratitude to have her family around her and be alive. HRH, you are my woman I’m celebrating today! Throw back to when the world fell apart in COVID and you still got excited for a selfie! I’ll keep ya Facebook famous for as long as I’m here 💙❤️💃🏼

06/03/2022

Last night I had the pleasure of talking at the congress with and . It’s always incredible how the bond is with people you barely you know when you only share a very unfortunate disease in your family. I haven’t posted much in the last year as life has been overwhelming to say the least, and my priorities have pulled me in every direction. However we do have exciting things in the works for young carers, and I will make an effort to bring more helpful content… after some tips from the mad hatter Ashley!

22/02/2022

Looking forward to networking and sharing our family’s story next weekend 5th March for the HYDO congress have put together an amazing event which is…. FREE. Webinars, up to date research and many faces to meet.. including me, and can’t promise we will make any sense but we will try!! If anything, we can prove that the HD community may be small compared to other diseases but we are a close knitted lot, and a community understanding of the hard times HD brings. Come join us! We’re on a panel 8pm Saturday 5th March! Follow HDYOFEED an register in their link

16/02/2022

Nights with these two make me forget all the bad of Huntington’s disease, and help me to remember that being in the moment and being grateful for what’s in front of you is a better way to spend your time than fixating on the “what ifs”. I’ve found myself stuck in the “bargaining” phase of grief for most of my life, in particular when I had Rosa. I wanted my Mum so badly, I knew she’d guide me, help me sleep and be there at my beckon call to be Nanny. I’ve come to a place of acceptance in the last year and it’s enabled me to enjoy every moment I’m with Mum, as I know her time is limited on this Earth! I hope this gives some solace to some; we are so so fortunate to have the support we have to keep Mum at home. Our carers are extended family 💕

12/02/2022

No matter how dark the days feel, remember to always find a bit of magic somewhere and light will start to shine through! I read last night “when you feel like you’re in hell, keep going. Why would you want to stop in hell?” So true, and there can always be something to feel grateful for if you can spend a moment in the present. Mindfulness for me is stepping outside and feeling the fresh air being breathed in! This moment was special and when the end product is ready ill share why ❤️

03/02/2022

Life has been so crazy since COVID came! I still feel trapped in that whirlwind despite rules easing and vaccinations going well. Feels weird to see photos like this from the inside when I couldn’t see Mum in the height of lockdown 1! What it has done is make me cherish EVERY time I’m with her that little bit more, and ensure Rosa spends quality time with Mum too. Thursday afternoons have become a “Nanny” afternoon, so I’m looking forward to school pick up and making memories. It’s been hard to live in the present when the future has been so uncertain for the world - but it’s the most important time TO live in the present. I’ve been on the frontline line as a paramedic and initially a student over 10 years, and even I forget to live in the moment. Today I am grateful for the clever scientists who worked to get vaccine!

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Little moments with these two ever strengthening their bond 💕 Rosa struggles so much with Nanny having Huntingtons. She expresses all the time that she wishes she didn’t have it. I worry a lot for when the time comes that she won’t be able to do this, but that’s why I’m putting any energy I have into talking through emotions with her, and most importantly, letting her see when I feel sad about it too. If we want the next generation to talk, and express whe they’re struggling, we have to show them it’s normal and OK to do that too!

Happy Sunday folks. Crisp winter sun, an amazing carer this morning making mum squeal dancing to Hugh Grant. Today, I am grateful for the people who show love to Mum. What are you grateful for today? Please post! It’s one of the important parts of healthy psychology 🥰

I love this video so much, I used it for teaching student paramedics at Worcester uni a few weeks ago. Alzheimer’s engulfed my beautiful Nanna - she couldn’t recognise us or converse properly. But…. Give her a baby.. she does this? We never know how much of someone is left in there. Make the effort to communicate, be kind and compassionate, and always remember who they were before because it’s still them ❤️ a year ago yesterday my Nanna rested peacefully.

Rosa got upset that her Nanny couldn’t go upstairs to see her new bed and fairy lights. We filmed the room to show her instead, I look at Rosa in this video, and she went from excited, to nervously playing with her feet, staying quiet and with drawing. It breaks my heart so much how much she is aware of Mum’s decline, and how she understands that Nanny is getting more poorly. We spent our lives as mothers feeling guilty and trying to protect our kids from everything… but at the end of the day, it’s experience that makes us resilient as adults, and all I can realistically do is be there to understand and support her through it. Young Carers carry SUCH a huge burden, and whilst we are so busy right now, we will be focusing on the young Carers soon. It’s important to acknowledge that a young child will experience grief differently to us, and it may manifest in behaviours, outbursts, physical symptoms caused from stress such as headaches. Look after the little ones ❤️

Last year I was sure my dream was to open a CFMB care home, for younger neurological patients. But the more I work in the NHS; the more I recognise if I want to stop burning out I need a work life balance, and you can’t have a care home half heartedly. I know I wouldn’t ever have a day off. So, NEW DREAM. One of mum’s Carers and I are legit planning a future doggo business. Including…. DOG THERAPY: so if all can bring me their cute dogs for “research purposes” that would be great 😂 Meet Arlo ❤️ Mum’s latest pal. Golden retriever pup, her laugh is just the cutest ♥️🌼

There is a reason I have muted this video. It’s actually a lovely video of mum giggling and my Dad having a joke with her. But you can see how exhausting the simple task of just sitting is, in someone with moderate stage HD. This was probably 2016 I think. The task of sitting is exhausting, and people like my Mum were still questioned by they couldn’t work. Or why they needed care. If you look how her brain affects her muscle activity; you can imagine how her brain activity is affected too - Huntington’s effects your ability to think, react, multi task, and effects your awareness of your self and struggles. Ever had a mate 10 pints / jäger bombs in who won’t accept they need help to get up the stairs?? This is similar. CFMB want to educate PIP assessors, social workers, nurses, doctors, paramedics, occupational therapists. One of the biggest things I’ve learnt as a paramedic being on the other side … is that I must listen to what Carers say.

9pm mum is shattered. She can barely drink or talk... BUT as I walked in last night, and had a little joke that she’s watching saucy scenes of Brad Pitt, her cheeky character came out! 🥰🌞 I hope this little video brightens the start of your bank holiday and reminds you that every storm has clouds and rain, but they aren’t permanent. Look for the rays sunshine no matter how little time they’re there ❣️ AND NEVER forget the person on the inside.. none of us know how much they’re in there ❣️❣️ #huntingtonsdisease #dementia #carer #nhsworkers #paramedic #campaigner #neurology #sunshinemoment