• A Message from Paul's Family
On 6th November, 2022, my dad, Paul Bentham, suffered what was described to our family as a "calamitous" stroke with a survival chance of only 10%. We were told by the doctors to prepare ourselves for the worst and that even if he somehow managed to pull through, his life would never be the same again.
It's now been six months since that moment and I'm delighted to report that my dad has finally been discharged from hospital and returned home, however their prediction has proven to be correct. Devastatingly, the trauma his brain sustained has left him completely paralysed and reliant on 24 hour care from a small group of close family and friends, with any potential recovery "up in the air" and impossible to predict. It's a very difficult, serious injury to navigate and will likely take years to progress positively - if we're lucky.
Despite this, we write with hope in our hearts. From the very first night of this terrible ordeal my dad has consistently overcome one towering obstacle after another that has left medical professionals astonished at his immense strength and determination. He's shown time and time again that he's ready for the fight in front of him and we have absolute faith that he can continue to exceed all expectations going forward. We honestly couldn't be prouder and know that regardless of what happens in the future we'll always find comfort and inspiration in his incredible courage.
The problem now becomes the frustrating matter of funding. While the NHS are assisting where they can, the unfortunate truth is that my dad hasn't been provided certain equipment and supplies absolutely necessary for the severity of his condition. A more advanced bed, an ultrasonic nebuliser for his tracheostomy, and even simple daily items like wet wipes all elude us as we find ourselves scrambling on a daily basis to compensate for what we're missing. Even in the short time he's been home the costs for this have been immense and we don't expect it to get any easier as we do our best to keep my dad relatively healthy and content.
It's awkward and uncomfortable to ask for help, but the insistence of so many amazing people has made us realise that we'd be silly not to. The love and support we've received from those of you who've shared in our heartache over this difficult period - especially the incredibly generous people over at Tickhill Cricket Club - really has been overwhelming. As his closest family we've always known just what a wonderful man my dad is, but to see and hear that same sentiment expressed so often and so passionately by friends means so much. We sincerely can't thank you all enough for the generosity of your words and thoughts, as well as any donations you may make going forward. We look forward to seeing you all and expressing our appreciation in person very soon!
Finally, we'd like to give a word of thanks to the doctors, nurses and staff on the Respiratory Ward of Doncaster Royal Infirmary who became as close as family during my dad's five month stay. Your kindness and warmth will forever be remembered!
Thanks so much again, everyone! Your support means the world.
- Lorraine, Daniel and Charlotte.
• About the Brain Injury
The official term for my dad's condition is Locked-In Syndrome. Here's a brief summary from RareDiseases.org: Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. Communication is possible through eye movements or blinking. Locked-in syndrome is caused by damaged to the pons, a part of the brainstem that contains nerve fibers that relay information to other areas of the brain.
- Locked-In Syndrome: Trapped Inside Your Own Body
- Woman With Locked-in Syndrome Talks About Her Incredible Recovery