Sam's story
Patient and Family Stories
In the early hours of Christmas Morning 2018, Sam remembered that she had a couple of presents left to wrap for her and Paul’s two children. At that moment on Christmas morning, she received a call from Rotherham Hospice to tell her that Paul, her partner of 18 years, had sadly passed away at the age of just 45.
This is Sam’s story;
Sam noticed that Paul was beginning to slur his words in the latter months of 2017. The concern for both Sam and Paul was that he had inherited the neurodegenerative disease that had taken the life of his mother and grandfather years earlier. Slurring speech is an early sign of the disease.
Gerstmann–Sträussler–Scheinker syndrome (GSS) is an extremely rare disease that affects only a handful of people World-wide. Paul, having had experience through his family of GSS, went to see a Doctor. Following lots of tests, X-Rays, MRIs, CT Scans, and a trip to Hallamshire in January, the Doctors told him he did not have GSS. In fact, they diagnosed him with Parkinson’s Disease.
By June 2018, and with Paul still riding his bike to work every day, they were both unconvinced with the Doctor’s diagnosis, and Sam began writing down all of Paul’s symptoms and issues, and following tests with a specialist in London in July, Paul was told he had indeed inherited GSS from his mother.
He was told by Doctors at that he had 5 years left, but Sam knew that wasn’t the case. After the huge shock of discovering he had GSS, Paul was referred to Rotherham Hospice.
The week before Christmas, our 24/7 Hospice at Home service came to see Paul. He was agitated and wasn’t responding to communication. Hospice at Home arranged for an ambulance to bring Paul to the hospice. Sam tells us that when he arrived at the Hospice on the Saturday before Christmas, he suddenly seemed comfortable, and much less agitated than in the previous week.
On Christmas Eve, Paul’s family including his children popped to the Hospice to see him, leaving at around 9pm that evening. It was the next morning, on Christmas day, that the phone rang. Sam says she just knew, the moment she heard the phone ring. Paul had passed away.
“I couldn’t ask for any more from the staff at the Hospice. They were all brilliant” Sam says.
The family asked for donations at Paul’s funeral and donated an incredible total of £560 to the Hospice, for which we are extremely grateful. It is donations like that, that allow the Hospice to continue to provide the quality of service that we do to families like Sam & Paul’s.
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