Not been here for a while. Been busy writing up a research thesis and I got a distinction for researching my own brain injury rehabilitation.
A quick recap for those who don't know me.
I had a TBI in 2017 and was told in 2019 that I would never recover. The health system offered no rehabilitation saying that no one recovers after 2 years.
I did not accept that and tried multiple alternative techniques and today I am fully recovered and even better than I was before the injury.
My research investigated the alternative techniques I used before going to university and at university I used myself as a guinea pig to test mindfulness-based practices because mindfulness has been shown to have neuroplastic properties.
I found mindfulness-based practices including MBSR, MBCT, CBT and acceptance and commitment therapy have no neuropsychological effect. I used neuropsychological tests to show this. Some of the practices have psychological benefits but others cause psychological problems depending on the practice. However, two practices had very good results for physiological and sensory processing. The psychological education that makes up part of mindfulness programs are out of context for brain injury rehabilitation because it assumes all your issues are psychological rather than neurological or physiological in nature.
I also tested brain training apps and found they do have an effect, but it is limited to getting good at playing the app only. They had no wider benefits.
Playing games, solving puzzles and doing brain injury workbook problems are the same, you get good at the game, or puzzle but it does not make a difference to everyday life functions.
I tried multiple other techniques that are proposed to have good neuroplastic properties, they were astonishingly good, but they have to be done in the right order to have effect.
Finally, I merged all the beneficial practices and techniques into one program that theoretically tick all the rehabilitation boxes scientifically.
I intend to share this program for free for everyone. I was advised to monetize the strategy as a rehabilitation therapy and charge silly money, but I know what it's like to have a brain injury and thought it's better to give it away to those who need it.
I will be presenting my journey of recovery on a YouTube channel soon and will give explanations of why this strategy may help and give demonstrations of how to do them.
There will also be a website that will give all the detailed scientific evidence in article posts.
I did the research, qualified it scientifically and trained for a teaching certificate so my program is legally underpinned by the UK system.
Let me know if you are interested and I'll let you know when the YouTube channel is up and running.
You are an inspiration. Yes followed your studying topics when we unexpectedly joined 2020. Congratulations and yes I'm interested especially on upcoming channel. X
Congratulations, your story sounds amazing. I am very interested on behalf of my brother who suffered significant TBI 2 and a half years ago. Very interested in your Youtube channel and website.
Yes please. My daughter suffered a catastrophic brain bleed and stroke at the age of 22, 5 months after graduating with a masters in chemical engineering. That was nearly 3 years ago. She has just been discharged home from specialist care facility so would welcome some fresh input.
Brilliant!......well done !.......inspirational!.......you reminded me of a time when I demanded a nurse push me in a wheelchair to the hospital library, so that I could learn about 'a brain haemorrhage'....at the age of 17 with only half your body working and no skull on the top of your head it was something I wanted to learn about if I was going to live with what happened for the rest of my life ! At that time I was scared to sleep in case I didn't wake up and wondered if I would get to my 18th birthday....48 years later here I am involved in international clinical research, there is nothing like making 'lived experience' a positive part of learning, knowledge and recovery, but most of all for me ....sharing....good luck with your future endeavours and projects. If I can help or you just want a chat anytime just give me a shout......I'm not a scientist .....I'm a bloke with a stroke
Well done on getting a distinction. I found your previous posts helped me to understand what was going on after my brain injury and you explained why I had symptoms when the CT scan was clear. I would be very interested in watching the YouTube channel.
Congratulations, always great to hear about successes.
Thank you for sharing your experience and for giving us all an opportunity to benefit from it. Agree with PhilC Drs can only provide medical knowledge which in many cases is very limited, you can provide ‘lived experience’ alongside your studies.
Will follow you with interest as anything that may help us understand what our son is going through is welcomed.
I would love to have a read & a watch of what you have put together a different person's perspective from a completely different angle would be interesting & refreshing
Firstly well done on your recovery and proving the consultants wrong by not giving up, hopefully you will go on to help many brain injured people with the work you have done so far & have a happy & healthy life. It is a very kind and thoughtful of you to offer your work & help for free to brain injured people, but you totally understand there struggles & those of their carers as you have walked many miles in there shoes. As a carer for my husband who had a brain injury over 28 years ago I would also be interested in your Youtube channel / website & the work you have done. Wishing you all the best for a happy, healthy & successful future.
Many congratulations to you. I’m quite new on here, having had my TBI 3 months ago. I’m still struggling in many respects and would love information about your YouTube presentation.
So pleased to hear your desire just to help others who need it through your efforts ❣
I finally seem to have got local Headway, local Brain Injury Service and others to accept all I really want to do is help others through my 25 post-accident experience. Perhaps I should write it down but don't know where to start, that's my ongoing task, the aforementioned will help me to help others 😊
Take a brave step into the unknown and sign up for a writing course at one of your local educational institutions. Once you get started the only battle you will have is against yourself and your will to keep going. Go for it.
sounds amazing and well done to you for getting this help out there . I’m very interested in hearing your research .. I nearly 3 years past my TBI and am still improving .. not sure what I’ve done apart from not giving up and pre accident I worked with complex mental health support work and also a guy how had a brain injury as a child .. luckily I remember the trading and knowledge I gathered while I did these jobs as I recognise the same in me .. nd this group how were saying the same as I was feeling . I wasn’t alone 😊sue x
Hi.... And wow.... What a journey you have been on and you are such an inspiration to so many. Thank you for sharing your knowledge and experience for free. Though it was my son who had TBI I would certainly be interested in your you tube channel and hearing your research 🙏🥰
Hi, well done! That’s a fantastic achievement. I can definitely relate to the 2year arbitrary rule and lack of guidance. I am doing well after my AVM rupture in 2018, but only thanks to my own drive & determination not to settle. I am a physio, so not completely’blind’, but neuro wasn’t my specialty. I’ve learnt a lot on the way!
I’d be really interested in your channel/website and - once again- Congratulations!
Wow. Would be very interested in watching your findings. I am new to your research, but as with anyone with a TBI (had mine since 2019) any help is still help.
Congrats for your distinction! Well done and what an achievement. I’d love to have access to your you tube channel to see what you have found helps. It’s 2 years since my brain haemorrhage and although I have improved there are areas I am still struggling with so up for finding out what helps. Much appreciated. Hobcat54
Good you've written up your thesis - always good to get to that point.
I agree that mindfulness likely doesn't fix brain injury per se - presumably you mean by affecting the results of neuropsychological testing? But the regular meditation practices do provide good brain breaks which help you to manage fatigue. Plus for those of us that have emotional disregulation of various sorts, I think the MBSR training to notice what's going on in your body and read what's happening in advance, is helpful to manage your emotional states. So I do think MBSR promotes useful coping strategies when handling brain injury - which I accept is a different thing to having a measurable outcome in neuropsychological tests
I know you are a fan of the book Mindfulness and Stroke by Jody Mardula. Jody also realized mindfulness had no benefit for brain injury rehab, see pages 56-57.
Mindfulness trains a non-conceptual brain state.
Brain injury rehab requires a conceptual brain state.
It's all to do with the left and right hemispheres of the brain.
Other meditative techniques can be used to train conceptual brain state processes.
The main reason I'm a fan of the Jody Mardula / Vaughan book is actually because of the excellent second section by Caroline Vaughan the neuropsychologist - it explains very clearly the various problems we face, with some excellent strategies for coping - it makes good reading for friends and family to understand what's going on, and how they can help in a practical manner.
I think you misunderstood the point I was making though. I think you are likely correct that mindfulness doesn't fix the effects of brain injury in the same way as physio - but the breathing practice does a) give a useful focus when taking brain breaks b) helps you to be aware of your physical and mental state - so that you can, for example,spot when you're getting fatigued ( so you can rest) and also when you might be going into emotional overload - so that you can perhaps avoid losing your temper with your nearest and dearest.
It doesn't fix the brain injury, but it can help you to live with it!
Lovely to hear from you Pinkvision, and may I offer my congratulations on your success! Absolutely wonderful, both your recovery and your distinction. I'm sure you know I would be really interested in your you tube presentation, please let us know when it's available. You are extremely generous making it all free, thank you. I'm so pleased for you xx
Congratulations on your recovery and research. Very interested in your upcoming YouTube channel. There really isn’t enough help for people suffering from a TBI and the knock on effects of it on the body. My husband is living with several side effects since he was knocked down last December and I whole heartily agree with your statement that it is assumed all issues related to TBI are seen as psychological rather than neurological. There seems to be no one we have encountered who can see the bigger picture and not just individual symptoms. Mindfulness tools are great in general for everyone’s mental health, but definitely haven’t helped with symptoms that are triggered as a result of his head trauma. Wishing you well and success on this new opportunity to help many people who feel unheard and lost.
Hi yes I’m interested in any tips. Suffer with chronic fatigue and after 3 years of trying to get back to work I was told it’s been 3 yrs your not gonna get better I sunk deep into a panic and bad mind set but I’m still determined at 4and a half years post tbi I meditate and push myself to stay active I am still struggling and would love to hear how a fellow survivor is finding success as I often think maybe these professional bi specialist are right and I don’t like it hearing your stories is inspirational
Congratulations and what an achievement. I’m very interested in your next steps on behalf of my sister who had a tbi 3 years ago. Like many here we have struggled with not much useful support from the NHS and the usual issues around people and friends who just don’t understand the impact of a tbi. Thank you so much for making your knowledge and insight available without monetising it. I look forward to hearing more. Wonderful.
Huge congratulations on achieving a distinction in your Masters (have I got that right?) Do you have any plans to pursue your research further (e.g. PhD?) I'd be very interested to see your website and YouTube. My partner's injury is more recent (six months ago), but all information is helpful.
Thanks, distinction for the research, overall Masters will be a merit I think because I averaged low 60's in the taught modules. It was a three year course and I started when I had brain injury symptoms so I really struggled to read, listen to lectures, had fatigue, screen light issues and communicate properly etc. The research will be available via open source on Google Scholar once it has been scanned and checked by the university etc. I'll give a link when it's there.
Amazing and congrats. Since my TBI I have recognised how few people understand brain injury in its many forms and methodolgies of how to deal with it. I consider myself very lucky to have come through it all and have often thought about writing down what I know but you have gone much further- top dollar!
I have merely read stuff from neuros such as Kester J Nedd and Henry Marsh and have a few others on the list to go at, but would be so interested in your thesis and anything else you choose to impart and share.
Congratulations pinkvision - that is one heck of an achievement. Wow!! What you have done is staggering! I would imagine your work will be read within the neuro field and help many clinicians which will help patients.
You wonderful person giving your findings for free to the folk who need it. You have had money temptations offered to you and have declined them. That says such a lot about the type of person you are. I can say how very grateful I am for you to do that for people who need it. I will be interested to watch your You tube.
What on earth are you going to do now that you have gained free time? I am sure you will find other things because you have a switched on inquisitive brain. Ahh - you will be presenting your work of course. Not only on You Tube, I would imagine you will be invited to conferences. Would you present at conference? Still, it must feel different no longer having to dedicate yourself to researching and writing.
Thanks Catrabit, you are very kind. My new life involves being a website designer, film studio set designer, director, scriptwriter, camera operator, sound operator, actor/presenter, film editor, special effects creator and most importantly the tea boy.
The website is almost done and the bare bones page will be live very soon and articles will be posted soon after.
I've created a YouTube channel and it will be live once my introductory video is finished.
Amazing once again. You are very adaptable and skilled. I feel like I must say be careful not to burn out, but you seem to have it in hand. You are juggling a lot of things and know your limits. I am so pleased you get to do this after your research. Applause 👏👏👏👏
Congratulations on your achievement, I would be interested in your video as my daughter had an accident 4 years ago and is still struggling with post concussion syndrome - she has often been told she probably knows more about the condition than the medics but whilst she is stuck having tried various therapies (privately) she is unable to pursue the career she wants having managed to go back to uni after deferring for 2 years following the accident to finish her degree.
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