Sorry if it seems like I am blowing my own trumpet but recovering from PCS/mTBI is possible.
I have been in this online community for 6 years and the stories of people joining with PCS are the same story over and over and over.
You get injured, go to A&E and get a CT scan which shows nothing. You may get a bit of physio, psychological therapy, an ENT assessment and eyesight test. You don't recover and your GP tells you that your symptoms are caused by depression. SOUND FAMILIAR
You struggle on for years, you are on the sick or trying to work and maintain some kind of social circle, but you are so fatigued with sensory and cognitive issues, then you realize all your friends have moved on.
You sit and wait for someone (the health service) to do something, but nothing ever happens and you are left going round and round in circles.
You join Headway groups and chat online to share your story and find others are the same as you; it helps because you realize you are not the only one.
But you are still sitting and waiting for something to happen, a magic cure or something, but it's never going to happen.
Then in 2021 Gillian Keegan MP announced to parliament that a new strategy for acquired brain injury was needed because the diagnostic and rehab system is UNFIT FOR PURPOSE.
But nothing has happened since and you are still sitting and waiting.
I did the same for about a year after my injury in 2017 then decided that if I did not do something then I would be stuck in a nightmare for the rest of my life.
I got online and started to search for alternatives and found loads of them and started to try some neurofunctional rehab techniques and they worked.
Then I went to university to work out why these techniques worked and wrote about that as part of my journey for a master's thesis.
Now this work has been listed on an academic search engine. I don't care about that but what I do care about is YOU because it's a story about how to recover by getting off your butt and doing something for yourself. If you don't you will be waiting forever because no one is going to do it for you.
Sorry it that's a bit heavy, but it's true.
Here's the google scholar reference (copy and paste into google scholar):
Williams, R. (2023). A Voyage of Recovery: from Injury to Internet to the Classroom. Assessing the Role of Meditation.
and here's the direct link you get when you click on it
Thank goodness there are people like you and progress is being made. I previously read your masters thesis and am following your story which is for all of us so dont ever apologise for doing such work.
You are our champion and long may it continue and that your work inspires others to understand and comprehend. We should all do likewise. Its an uphill struggle everyday but until there is greater recognition out there nothing will change.
I will b reading this later as it’s easier on my iPad .. I am so happy to hear this post and that you have written about it . Not something I can do or good enough English 😊 but I have driven myself to get to where I am now ( at the moment got pain in hips probably from working to hard on something that I thought I could help by working hard ) but I am now waiting for neuro , waiting for GP to ring back again as they only have 10 minutes, waiting for hip people to see if they can help with the pain , 5 months this has been going on and I told them it was my neck and head I broke but they have to do x-rays then MRI in lower spine because it’s my hips that are sore …. But it’s because of my leg weakness that the hips are sore ( my opinion) and guess what 5 months to be told they can find nothing wrong from the x-rays and MRI on lower spine 🤬. 5minths on and just waiting for Neuro .. which is what I said at the beginning .. can’t say that’s helped my anger issues … and that’s just the hip pain and leg weakness …. Im also waiting for neuro rehab for memory problems, anger issues etc my dizziness and no taste hardly ever gets talked about ..🤔so sorry this is very long winded but I’m over the moon that what TBI actually is like and I want to shout it from the roof tops but wouldn’t be able to find the right words … keep writing everyone Sue x
Hi Sue, I went though a long process of investigations to solve limb weakness and spinal issues. Finally, this year it all came to a conclusion, I have both spinal issues, damaged discs, scoliosis and nerve impingements that cause some of the problems. Carrying and lifting things compresses my spine and impinges the nerves, my legs go like jelly and I get lower back and hip pain. The other issue that was found was that I have dystonia down my left arm. This is a neurological issue which affects the nerve signaling down the arm and prevents blood and lymphatic fluid from getting pumped out of the arm so my fingers swell up like sausages and the lymph nodes feel weird in the armpit and above the heart.
I'm telling you this because there could be multiple reasons for your hip and leg issues. It was all explained to me properly and the conclusion was that I just needed to adjust my life to stop lifting and carrying things that caused the nerve impingements. As for the dystonia nothing can be done except doing exercises to stimulate the signaling down my left arm, it works.
Not sure if you do yoga but many of the positions cause problems if you have spinal issues, especially the cat/cow movements. I thought they were helping me but when I stopped doing them and I improved; something to think about.
But we are all different and hopefully they will get to the bottom of your lower back, hip and leg issues.
R - thank you for posting this. I already meditate, and will be reading this with interest.
What you have done is give me the basis for assessing where I have got to, and setting some simple goals. See if I can get better - your work gives solid hope, and adjusted expectations.
So, so useful.
I will also send it to my family who will be delighted with this work. We're really happy with the academic route you have taken - family full of academic people.
I will forward this reference to my cousin, whose son suffers from PCS and who will also be delighted.
I will send it to the mindfulness people in Oxford - they will definitely be interested. Also others in the field, plus my mindfulness teacher, herself a Cambridge grad and a real believer in evidence based work.
I will also send it to my GP who is a right-thinking woman, and will use it judiciously.
Did I say I was grateful?
Thank goodness for your post.
Would be happy if we could email each other - is this possible? is there a direct message facility on this platform . . . Must check.
Thanks, would be very interested to know what the Oxford group thinks about this. My findings match all the other recent research into mindfulness and brain injury which says it is unsuitable and out of context. It is a psychological therapy that targets emotions rather than a neuropsychological aid for rehabilitation. All the research that says mindfulness is effective is fundamentally biased because it does not record the negative effects.
Yes, you can contact me privately by using the chat function.
I was thinking of applying to the Oxford group to continue my research as a Ph.D, but as I'm 60 I decided to get a teacher training certificate and start up a YouTube channel to share my techniques instead.
It's up and running and will be developed over the coming year. I'll have some demonstrations up soon, but I need to put in some of the background of what PCS is first as reference material.
More power to your elbow. I am going away - meeting my son - me too over sixty, btw. Back in a few days. Will then look at contacting the Oxford people. But I agree with your decision - a youtube channel will be a great start.
Thank you Richard for this- I will read through your thesis and have had subscribed to your YouTube channel. Fantastic work!
I too had a mtbi/ accident in 2017 but was in denial until January 2023 that I had probably sustained damage to my brain - and had been flailing around without any medical intervention. My accident happened abroad and was more or less swept under the carpet as it were, by me too as I couldn’t have handled the confrontation it would have entailed re my employers etc, even though I couldn’t and haven’t been able to function properly since- and too late to follow up with legal redress….
I’m on the slow train to diagnosis(/nowhere?) now with the NHS, who are all trying their very best with what resources they have.
As someone who is usually so solution-driven, I’ve been looking all over for answers these past nearly 7 years but not in the right places! I’m keen to see what your personal research has revealed.
The thesis is in academic style and may be a bit heavy going. I've started to upload videos to the YouTube channel youtube.com/@mendingbrokenb... that will explain it in everyday terms.
Very much looking forward to episode 3, hopefully the 'what I can do to get better bit'? I'm halfway through ghost in my brain. Reading that before re reading Thesis. It blew my mind the first time!
Not a problem, I've just finished proof reading my partner's Masters submission so I'm quite familiar with the style.
Two quick questions - before you had the injury did you have any previous meditation experience?
Also did you have any previous experiences with Psychedelics as your descriptions are highly reminiscent of LSD or Psylocibin experiences. They reminded me of Aldous Huxley's writing in the Doors of Perception.
I've been coming at the plasticity element via the excellent work of Robin Carhart-Harris - you might be especially interested on his recent paper on Pivotal Mental States.
I had no experience with meditation or psychedelics before my injury.
I searched for my experiences after the injury and found they were very similar to the DMT experience. I am familiar with Robins work.
My experiences however were much more defined and more relatable to jhana experiences from meditation descriptions.
Very similar to Jill Bolte Taylor in 'My Stroke of Insight' where she describes it as nirvana.
This is where I made the connection with the right brain hemisphere experience. It made sense because the majority of my disfunctions were left brained. The left brain inhibits the right brain so if the left is dysfunctional the right brain takes over and you see the world from that side instead. Amazing and fantastical, a different reality, the non-conceptual mind.
I can now switch between the hemispheres at will.
Different meditation techniques can help people switch between the hemispheres so in effect if you mix a meditative technique with rehabilitation methods you can intensively retrain that part of the brain/function. That's what my rehab strategy is all about. Once you can grasp the basics you can retrain any function you want to, but it has to be done in a particular sequence. It will all unfold on youtube where much more than the thesis will come out. Not sure what the private providers will think but who cares because they charge astronomical fees for similar techniques and I'm just going to show everyone for free. It's all pretty simple once you get your head around some basic principles.
I'm not entirely sure now but I guess a much drier account of slow progress through daily practice.
The direct experience narrative was a very pleasant surprise and has got me fired up to resume my practice as I've struggled to sit since my own injury a couple of months ago.
Am following your YouTube presentations as they appear, very nice work.
On the question of Neuro Optometry, do you have any recommendations for practitioners in London at all? I've had a standard MRI and a consultation and full range of balance tests with a Neuro Otologist and there are no areas of concern so far.
I'd like to cover all bases with a DTI and Optometry test but I haven't noticed much in that field with my initial searches.
On another tack, did you try or research optokinetics during your recovery? The ones on YouTube seem to help to some extent, but if you have any links to good papers that would be helpful.
Thanks,
Jon
It would be better to ask via the YouTube channel because this is the Headway forum
I didn't know of your YouTube videos and have just started watching the first one with interest. Nicely presented - thank you for sharing.
Had to stop now because Brain Says No but look forward to watching the rest (with some nervousness - I still don't know how to wrestle the healthcare system in actually giving me this stuff, and the only local private concussion clinic weren't interested in seeing me).
I think a lot of my issue is not having the energy or screen tolerance to be able to even go through the info that does exist tbh, but I will return to this later and it definitely looks interesting. Cheers.
I don't know, it's a new thing in the NICE guidelines for assessing head injuries. I do remember having this about a year after my injury and it was normal. But I think some people have altered hormone levels after a head injury. I think it should be done within the first few weeks or months after the injury rather than a year or more later.
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