The Locked-in Trust was recently approached by
the Brown family on our Facebook page https://www.facebook.com/lockedintrust.co.uk/.
Jeff Brown, suffered a stroke in 2019 which left him 'locked-in', we asked Jeff and his wife Sarah if we could interview them to share their story with us and they were so generous and eloquent with their responses that we thought we would just leave the transcription as it stands so that you can read their journey in their very own words....
Destination: Kent, England
How long have you had
Just shy of two years
How did it happen i.e. sudden
Sudden Stroke in the Brain Stem. Lots of screenings were carried out post-stroke to try to determine why this would happen (especially considering young age). Following more than two positive results over a period of more than 12 months, I have been diagnosed with Antiphospholipid syndrome (APS).
How long was it before
someone realised you were there, locked-in?
My family realised very quickly that I was in here! It seemed to take medical experts much longer to acknowledge that I could understand everything and that I’m still ‘me’. Even then, most people would talk over me rather than to me (something that is still very common today unfortunately).
Could you talk us through, or list a timeline of recovery?
29th June 2019 - 2 August 2019:
My stroke struck on 29th June 2019 whilst I was at my yard where I tinkered with cars and motorbikes. I managed to get myself to somewhere visible before I collapsed as I just knew that the intense dizziness I was feeling was something serious. I was airlifted to Kings College Hospital London where I remained for 5 weeks between Intensive Care and the Stroke Ward. During this time I was weaned from being intubated and a tracheostomy was inserted, I suffered a couple of serious chest infections during this time – on one occasion I had a mucus plug that was missed and blocked my airway, the crash team had to be called and I was moved back to intensive care as it was clear I needed the 1-1 nurse - patient care. Overall, it seemed that my condition was so unknown that staff didn’t always understand what level of care I needed
2nd August 2019 - 27th September 2019:
I was repatriated to my local hospital (QEQM) where I was placed on the respiratory ward under the joint care of a Respiratory Consultant as I still had the tracheostomy and the Stroke Consultant for my neuro needs. During this time, I was successfully weaned from my tracheostomy. My swallow started to become a little stronger and this is where I first started to receive some Physiotherapy which consisted of passive limb movements and gradually they introduced fully supported sitting on the edge of the bed and tilt table work which I tolerated incredibly well. During this stint I met some wonderful Nurses and my fabulous Respiratory Consultant who are all still a big part of my journey today – they are some of the first and only people who didn’t just write me off. There is always the bad that comes with the good though and my family had to fight against many things, including DNRs put in place against our wishes and the intensive care consultant telling us that they wouldn’t intubate me if I needed it… essentially because they assumed my quality of life wasn’t worthwhile.
27th September 2019 - 13th December 2019:
I was offered a placement at Kent’s Neuro Rehab and I was excited to move forward with rehabilitation work. However, this did not live up to expectations at all and unfortunately yet again my condition seemed to be so unknown that the rehab plans put in place for me were very limited. To put into context the attitude towards my condition, a couple of days after we arrived on the ward the Neuro Consultant in charge commented to my family: ‘Well, years ago Jeff wouldn’t have even survived this far’. My family have fought my corner on many occasions during this journey and this was no exception… my Mum told him he needed to read more on the condition! During this stay I again had DNRs put in place overriding our wishes not to have, I also once again had intensive care staff talking at the end of my bed, over the top of me, telling my family that they wouldn’t intubate me if I needed it.
On a positive note I did begin to communicate during this stay using a basic alphabet board – it had taken up to this point to establish a way for me to communicate using up/down eye movements (up for YES, down for NO) – my side to side eye movement was very limited at this point. I also started working with KMCAT (Kent & Medway Communication Assisted Technology) and using an eye-gaze device – however the use was very limited to me due to my restricted eye movements.
I developed a chest infection that the staff seemed unable to cope with and I was sent back to QEQM. Overall during this stay I felt incredibly vulnerable. In all honesty it often felt that the staff found me to be too much like hard work as I couldn’t do anything for myself. The staff would never use the spell board with me, so my needs were often incorrectly interpreted.
13th December 2019 - 5th April 2020:
I spent this next period of time back at QEQM for the most part surrounded by staff who cared for me and understood my needs. In addition, I received more neuro rehab therapy here than I did in the rehab unit. I had daily sessions of sitting out to encourage trunk control and for the first time I used a neuro bike – this is how I first knew I was able to get signals to my legs as it registered input from me and I loved my daily cycle trying to increase my percentage input each day. As we all know, early 2020 saw COVID-19 strike and for me the future looked very uncertain. I was told I had no choice but to go to a Neuro Rehab Unit which was over an hour from my wife and family. My wife fought to allow me to come home which was eventually agreed and I’m so thankful for that.
5th April 2020 - Today:
Since I’ve been home, my wife and I have coordinated massive renovations to the downstairs floor of our home to create a bedroom, wet-room, open plan kitchen/living and easily accessible patio – this has hugely increased my quality of life when it comes to daily care support (I was sent home under emergency COVID funding and so the care package was limited), PIP, Motability, medical support etc. However, I feel lucky to have obtained the network of support that I now have, since being home I have been assessed and qualified for Continuing Health Care support.
My sister fundraised to buy a neuro bike which I now use every day at home. I also see a private Speech and Language Therapist and private Neuro Therapist once a week each. Paying for private sessions seems to be the only way to get consistent input from a community rehabilitation perspective. Both therapists are very positive about my recovery yet to come.
I have had one stay in hospital since I’ve been home – I was in for most of January this year due to a severe pneumonia leading to empyema’s requiring chest drains. This was during a peak of COVID-19 and the NHS and staff were amazing with ensuring my stay was as safe as possible. We had to fund this ourselves (my wife ‘luckily’ had a critical illness cover for us through her employer) otherwise we would not have been able to afford such extensive renovations. We’ve faced challenge after challenge in getting the support we need when it comes to life at home.
What hobbies do you have?
I’ve always had a big love for motorbikes, I am an avid fan of the MotoGP and Superbike series. I have two bikes, a Ducati 748 and a Honda SP2 – the latter of which I have bought post-stroke! I intend to get a Ducati Panigale V4 in the future. I like to look online at bike related stuff. I enjoy watching a good series or film on Netflix/Prime with my wife. Spending time with my family is important to me – I very much enjoy having a beer or two with my brother (even though I’m nil-by-mouth right now, I still taste what goes into my stomach).
What is the most difficult /
frustrating issue for you when it comes to living with locked-in syndrome?
I find it incredibly frustrating that I can’t just use my arms to do what I need. I still instinctively go to use my limbs all the time and it’s horrid when they don’t respond.
The Locked-in Trust wishes to thank the Brown family for sharing their story with us and look forward to speaking to them again in the future.