Jeff Brown
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
Age: 40
How long have you had
locked-in syndrome?
Just shy of two years
How did it happen i.e. sudden
stroke?
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.