Electric wheelchair and wet room for Paul

My husband Paul recently became disabled and has a lot to deal with in a short period of time. We have had to make adaptation to the house and our lives and unfortunately, we are now finding it a struggle to be able to pay for the things that are needed for Paul to have the opportunity of a good quality of life that we previously would have taken for granted.

Paul is a loving, caring husband, father and grandfather, who always was on hand to help anyone in need. He was very active (as you will see in the pictures) and he was constantly handy around the house with DIY and always helping others with their DIY. He thrived on decorating and home improvements and is quite the perfectionist. Paul is a time served joiner and has a work history of being a paramedic and employee of the NHS. He enjoyed taking our two beagles out several times a day using the opportunity to listen to podcasts and chat with fellow dog owners. This has taken a toll on his mental health as he is no longer able to enjoy walking the dogs.

In 2008, Paul was diagnosed with a rare genetic disorder called Hereditary Neuropathy with liability of Pressure Palsies (HNPP) which is where the PMP22 gene is missing and can cause muscle wastage along with many other symptoms. He endures daily symptoms of muscle spasms, numbness, neuropathic pain and constant fatigue. He has problems with dexterity in his hands and was told potentially that this could progress to his legs. Even though Paul endured these symptoms he was still able to enjoy a good and productive quality of life. Paul enjoyed nothing more than exercising, high intensity circuit training and competing In running and Tough Mudder’s where he was able to adapt to suit his disability.

Unfortunately, this all changed back in September 2022 when Paul found himself inexplicably unable to walk one day, with his mobility progressively worsening. From then on he found himself getting worse by the day. After a hard few months both physically and mentally Paul began to experience many falls which ultimately led to head injuries and hospitalisations. This took a toll on his mental health and wellbeing to an extent where he no longer wanted to be here. Eventually in January Pauls neurologist sent him for more MRI scans including on his neck. We got a call the same day to say that Paul needed to go the Walton centre that evening for emergency surgery as the scans identified a swelling to his spinal cord due to wear and tear to the vertebrae in his neck. This was causing compression to his spinal cord which was causing the problems with his mobility. He was then given a C4-T1 instrumented stealth guided fusion on 1st March 2023 for progressive myelopathy and degenerative spondylolisthesis of C7/T1. So Paul will now have 2 Titanium rods and 10 screws permanently supporting the vertebrae and spinal cord in his neck. After his operation the surgeon explained there was a 30% chance of Paul’s mobility getting better however, he will always need to have a wheelchair and walking aids.

The specialist has advised us that Pauls case is quite unique due to the rarity of the HNPP and acquiring a spinal cord compression at the same time. Hence why this has led to such an impact on Pauls mobility and both our lives

We have had various adaptions done to the house which enables Paul to have a certain degree of independence when at home. Paul currently has carers coming in to help twice a day as he struggles with his personal care due to the lack of adaptations in the bathroom.

It is now essential for Paul’s quality of life that we renovate the bathroom into a wet room that is adapted to his needs. Unfortunately, we have used any savings we had on the other renovations. I am a full-time student and Paul works from home, so our money is tight especially with the cost-of-living crisis as they are.

I’m asking for donations to use for a wet room and a motorised wheelchair.

The wet room will make life easier as he currently struggles with getting in and out of the bath even with the aids we currently have for him. He also struggles due to the bath and the toilet being so close so a wet room would open up the space and make it easier to use. We have taken advise from the occupational therapist from social services as to what Paul will need in a wet room.

The wheelchair will enable him to have independence when leaving the home. He currently has to depend on me being with him as he is unable to walk any distance unaided. It will give him the opportunity to come out with me walking the dogs. Paul can’t use a self-propelling wheelchair due to his neuropathy as he is unable to grip the wheels to propel himself. We have been to several disability shops and found the perfect solution in a electric foldable wheelchair which can fit in the car. However, these come at a great cost and the cheapest we have managed to find is £2312.

Despite everything, Paul is a proud man who never moans or feels sorry for himself. He has handled all life has thrown at him so well, and I am very proud of him. I wish I could offer him everything he needs right now, but I am a nursing student and am therefore on a student budget. Giving him access to the wet room and the freedom to be independent through the use of an electric wheelchair would significantly improve his mental health and wellness because his quality of life is currently dependent on me and others.

Any donations that you are able to spare would be greatly appreciated. We realise everybody is going through a cost of living crises so any amount received would be amazing. We will keep the page updated with any changes as they happen. Thankyou and please share :)