Luke's Journey

Luke Parry

Luke Parry

January 27, 2023

My journey from brain injury to recovery

Hello! My name is Luke and I had a traumatic brain injury a good number of years ago. It’s hard for me to tell you exactly when because it was all a blur. I was an engineering student at the university of Oxford when I had a spectacular fall from a second story balcony. A large part of my skull was removed…. then lost in delivery from Spain.  

I had my injury whilst on holiday and then spent many years in recovery. Life started again with much loss. Everything changed. But with hard work, determination, patience and the right support I and other TBI survivors can develop a new life. My purpose now is make this process easier using your smart device!

It has been a long journey. My family being told initially I might not survive the night then needing constant care and being unable to walk, to now walking dogs and travelling independently. Caring for animals has been especially important. I had years needing care myself so that when I became well enough, it felt good to give something back. I feel blessed really, things could have certainly ended a lot worse!

Expectation but with a lot of time and effort....Reality

Expectation but with a lot of time and effort....Reality

I have found that regaining my ability to think more rationally and retain more information in my brain box has been a double-edged sword. Learning about how much I had lost and how difficult it is to get even a small portion of my old level of competence back was very upsetting. Appreciation of the care I received has led to acceptance of the support I need now, as this gives me the will for self-improvement.

When I was young, before my injury, I used to get a puzzle set every Christmas. I used to fixate on these for hours after. After my injury, I saw my mind and the steps of my life and improvement like this, only the pieces were no longer cardboard cut-outs, they were me.

Drawing of Morpheus by me

Drawing of Morpheus by me

Although I had lost certain things from my life, there were certain things especially music, art and drama that I kept. I found that if certain parts of your life are lost or appear to be so, they have just changed form. The entire energy of the universe remains constant.

Painting of the Big Lebowski

Painting of the Big Lebowski

You've got to aim high

Photo taken of my CEO and twin brother Ellis at the neumind office

Photo taken of my CEO and twin brother Ellis at the neumind office

But not too high

Rehabilitation is a full-time job!  I say a job but honestly it's more of a life-change and like all the best changes in life, it cannot be done on your own. My family and friends have been a godsend. After my injury I was completely dependent on them, now the dependency is much less. I feel I can give what they gave to me back. Knowing that some people do not have this support both made me realise how lucky I am but also inspired me to help fellow survivors.

Photo after 1st surgery

Photo after 1st surgery

The idea behind neumind came from my love of Batman. Having a competent butler who knows what you have to do, where you have to do them and when they have to be done was behind the original name of our app, Alfred. After my injury,  I was very reliant on my family and carers to organise my life. For this we used ‘The Whiteboard of Life’ on which all the plans, tasks and schedules- everything except from my thoughts- was put. To be able to take ‘The Whiteboard of Life’ with me was the creation of neumind, which I can now carry in my pocket.

Photo taken at the Lewin, Addenbrokes

Photo taken at the Lewin, Addenbrokes

Now using the things I have learnt in rehabilitation and using neumind to assist in giving me prompts I can live a much happier and more productive life without as much external support.  

Living in the moment and accepting the new me, along with my difficulties and problems took a long time. But finding ways to overcome those challenges whilst accepting who I am now is like being born again. 

Photo of me taken at rehab

  

Photo of me taken at rehab

Running after being told I'll never walk again is one one achievement I can place on the stack.  If you can laugh in the face of adversity, you are bulletproof.  

Photo taken at Cambridge University Athletics

Photo taken at Cambridge University Athletics

Becoming an adult is a lot harder the second time! Like the PBI me (PBI = Pre Brain Injury) I am very physically active. I was training to be a para athlete but after consideration and many changes in their categorisation I now run and train for fun. Getting out of my comfort zone is certainly one of my strengths!  I believe all traumatic brain injury survivors have already overcome one of the hardest obstacles in life and we should remember that whenever we are in times of struggle. Being aware of some of the difficulties we face is certainly something you need to consider but with the right support we can overcome it together!

I feel very proud of myself and the company we have founded. Now I assist in the development and design of the company. Having been a TBI survivor I’m an ideal guinea pig who can help develop the product from first hand experience. 

Photo of the neumind team and James Cracknell, double Olympic gold medal winner, as well as a  TBI survivor)

Photo of the neumind team and James Cracknell, double Olympic gold medal winner, as well as a TBI survivor

Once the survivor has recovered past a certain level he or she is released into the wild, or so it feels. I’ve had to begin life again from scratch. Like my previous life it’ll involve learning, getting a job, getting a girlfriend (I’m still working on that!). I’ve seen first hand how survivors learn together and how much happier and productive they can be if they tackle the recovery process together.

Photo of me and my brother Ellis last year on a stag in Berlin  Can you spot the difference?

Photo of me and my brother Ellis last year on a stag in Berlin ...can you spot the difference?

Every survivor has their own unique recovery journey, each with its own hurdles. Relying on the state solely to help you for however long it’s needed will not be sufficient. The way we saw it at neumind, why not club together and help each other using your smart device? I still remember how me and fellow survivors regained their ability to efficiently use their phone or smart device before other skills. This could certainly assist in their rehabilitation. Seeing fellow/'comrade' brain injury survivors tackle their problems will really inspire those who may need it, and give them the tools they need. They or their team may also get new ideas in how they proceed in the next step of their ever changing life.

I need to wrap things up now, my phone is alerting me I have unfinished prompts!  Thanks for hearing and seeing my story so far. Although this is my journey, it was meeting others along the way that gave me the motivation to recover. I hope you feel the same way. 

LJ Parry

Me with friends

Me with Friends