My name is Aaron. I'm an ex-concussion / mTBI patient who found recovery extremely tough, dealing with a myriad symptoms (difficulty concentrating, headaches, dizziness, noise sensitivity) alone. This was until I received the right treatment through my concussion specialist, which is not commonly available within public health. He did a series of evidence-based tests on different dysfunctions corresponding to different areas of the head (autonomic nervous system, vestibular system, occulor-motor system, cervical area) that are often injured from a traumatic impact, and prescribed me respective rehabilitation exercises. I found the exercises immensely helpful and am now fully recovered from Post-Concussion Syndrome.
During this process, I realised that a lot of the treatment I was receiving could be done remotely. Having convinced my concussion specialist of this (did I mention that he has a PhD in Concussions?), we have now joined forces to work on bringing the treatment to everybody with a smartphone, which we hope to one day provide through the NHS.
We are looking for volunteers to co-design and test the platform which would help to create something that is effective at treating people who have suffered from a concussion / traumatic head injury. Because the platform is designed to help people like you, you may also pick up some tips that could help with your recovery journey.
If you are interested to help shape what we’re doing please send me an email at codesign@headyrehab.com
Many thanks for reading this message and I look forward to hearing from you,
Aaron
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Aaron_Heady
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I'm working on this project with a practicing concussion specialist with a PhD on concussions while completing my own PhD in another field. We're developing a digital platform that provides evidence based exercise rehabilitation as well as advice and education. It is indeed a range of exercises addressing different issues relating to a traumatic head impact.
My original injury occurred from a blow to a face from a mountain biking crash, with short term memory loss and many other symptoms in the following weeks (noise sensitivity, difficulty concentrating, headache etc). It was only after the expert advice from this specialist that I started recovering, which took around 3 months. I'm now fully recovered and experience no symptoms at all.
If you have any time that you could spare to talk to us about your experiences and give us some feedback on what we have created so far please send us an email at codesign@headyrehab.com , it would be great to hear from you. While this is explicitly NOT a medical consultation, we believe that you may inevitably pick up some valuable information about your own recovery journey, while helping us shape the lives of future patients going through the same thing as you.
Hope the doctorate goes well Aaron - what are the qualifications and experience of your 'concussion specialist' - and what evidence base do they have - and what research have they published on this though? Plus it's important to remember that everyone's trajectory of recovery from MTBI is different - some apparently recovering in months, some not fully recovered, like me, in four years plus, despite rehab.
I have edited my response above quite a bit before your comment came through on my computer! Thank you for the good wishes 😊.The only thing I would add to my response is that they have publications in the field of concussions, and are clinically active in treating top athletes in this field in addition to practicing in a concussion clinic. The treatment he is providing is not limited to his personal research and obviously includes well-known tests in the academic community such as BCTT.
My best wishes to you and for your recovery as well!
Certainly there seems to almost be more knowledge on concussion treatment in the sports physio field than in general medicine. I benefitted greatly from the exercises I was given for vestibular and oculomotor problems post concussion.
Perhaps closer to an alpha version since we're still developing everything 😉 We have the science to back what we're doing, but we're still exploring how best to communicate this and to help users to adhere to the science.
Hi Aaron, I don't want to be the doom and gloom bearer. Everyone who sets out on this journey of recovery looks around for answers, and we all find things that work for us, and possibly quite a few that don't. Anything that helps is admirable.Credibility is a big deal, because it was right for me doesn't necessarily equate to being right for others, and it doesn't mean that there aren't already versions of our idea already out there. Also if we are compiling a group of 'therapies' we need to ensure that we have the evidence base to supply them for use by others. Are we qualified to produce this? Where does our liability begin and end?
It's great if you can fill a hole in available support, but I think you have many boxes to tick. Good luck 🍀
Firstly, good luck with the research and secondly a request for caution. You are talking about exercises. My experience was a brain injury developing into ME and as you probably already know ‘exercise’ for people with ME can be counter productive and damaging. Awareness around this is important.
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