Jeff’s Locked in Syndrome Journey

On the 29th June 2019 my brother Jeff (aged 38) suffered a stroke.  He was alone working at his yard on cars like he always was. Thankfully somehow he managed to get himself to a point where he could be seen & an ambulance was called. He was then flown by air ambulance to Kings Hospital in London and put onto life support, where he spent the next few months in intensive care and the journey that followed is just unimaginable. After he had been assessed and scans were done we were told by the consultants that Jeff had suffered a catastrophic brain stem stroke.  It is very rare (1% chance) of anyone becoming “locked in” with this type of Stroke and our Jeff being 1 in a Million, unfortunately was confirmed as having Locked In Syndrome. Jeff defied the consultants and fought his way out of intensive care at Kings.  He was placed onto a less intrusive stroke ward and awaited a bed to become available at our local hospital. During his stay he ended up back in intensive care a couple of times, we almost lost him on a few occasions but Jeff came fighting back. Eventually Jeff was transferred to an amazing team at QEQM who weaned Jeff from his tracheostomy and gave us hope and encouragement, he stayed with them through many complications over the coming months moving from ward to ward depending on his circumstance at the time. He contracted infection after infection but still defied consultants and carried on fighting.  Jeff was given daily physiotherapy to help which in turn helps his mental health. Only being able to move his eyes up and down, Jeff had no way of comunicating at the beginning.  A Spell Board was created as Jeff can only move his eyes up and down (up for Yes, down for No) and finally we were able to start communicating and asking questions he could answer. This was such an amazing breakthrough. Then Covid-19 hits…… It became rife in all our local hospitals.   We fought for Jeff to be able to come home as we felt this was the safest place for him to be, as he was so susceptible to contracting Covid. This was denied by the medical profession,at first due to his needs,  but just in the nick of time, the NHS pulled through and allowed him home on the condition his wife (Sarah) cares for him. Jeff has wonderful carers 3 times a day, and his amazing wife has been by his side 24/7.  The main issue now is that Jeff only receives the physio that Sarah has been trained to carry out. Whilst Jeff was in hospital he was given physio on a bike.  This bike is amazing.  It pick’s up any movement that Jeff may be trying to work against it. You could tell when Jeff had finished on this bike, it tired him 20 minutes on the bike is like running a marathon), his muscles had been exercised  andhis mental health improved.  He is desperately missing this piece of equipment and we want to get his Journey with locked in syndrome back on Track. Jeff will remain at home until Covid is over, he will then go to rehab to support him whilst his house is adapted to have him home permanently. We want to be able to access any form of equipment we can to help Jeff carry on his fight at home especially one of these bikes. This equipment is expensive, with a remodel of a house and now being down to a single income we wanted to see if we could raise some money towards the cost. Our target is £7,000 which is approx. the cost of the Physio Bike.  Please, donate if you are able to and become part of Jeff’s Journey with LIS.  

Thankyou from all Jeff’s Family.