The following story is written by Marie’s daughter, Cathy.
My Mum Marie Green was born in Dublin in April 1947, right opposite the Guinness factory, she always said you couldn’t get more Irish than that. Mum was very proud of her Irish heritage; she said the smell of the factory was always with her long after she had left Dublin to come with her Family to Rochdale in England. She was one of seven children and they came in search of a better life when Mum was 10, she was very much working class and spent her working life in many of the mills of Rochdale. When my step dad passed away mum decided to move to Nottingham to be close to me, her grandchildren and great grandchildren in 2014.
Mum was very independent, she was funny and always up for a laugh, you would never have guessed her age from the way she behaved, she was young at heart. Mum loved her line dancing and Bingo and was happy with her life, looking after her great grandchildren brought her great joy.
It was around February 2022 after attending a baby shower for her granddaughter, that we really started to notice something just wasn’t right with mum. Her memory was going a little but we did attribute it to perhaps being just an age thing, Mum being 75. Nonetheless, I took her to the GP to get checked over as she was also having headaches. When the tests showed high blood pressure we thought perhaps this could be causing her confusion but within a couple of weeks mild forgetfulness turned into rapid deterioration.
At this time, I would pop round to Mum’s and find her sitting with the TV off but complaining of flashing lights – she became incredibly paranoid, suggesting that it was her neighbours spying on her. By April, it became clear that she couldn’t cope on her own so we brought her to live with us. Mums condition continued to deteriorate rapidly and, after many calls to the GP, we finally managed to secure an appointment for an MRI in May. Initially they diagnosed Posterior Reversible Encephalopathy Syndrome (PRES), a treatable condition, and I was advised to take mum to A&E where she waited for 14 hours. She was confused and scared. Mum was eventually admitted to hospital and we were delighted that she was finally going to get the treatment we had been so desperate for.
A week later, we were informed that the diagnosis was still PRES but that for Mum the level of damage that had already been done meant that we would have to accept there was nothing further they could do. As a family we simply could not accept the diagnosis, it didn’t fit Mum’s symptoms at all. At this point, mum couldn’t dress or wash herself, she was agitated and distressed most of the time, had no idea where she was, couldn’t sleep and was hallucinating.
Eventually, the consultant agreed to a second MRI, a lumbar puncture and an EEG, but mum was discharged with just blood pressure tablets. After a week at home, mum was back in hospital experiencing episodes of semi-consciousness. We took the opportunity to speak with the neurologist again, after doing research on mum’s symptoms and how they presented we reinforced that we did not think they were indicative of PRES and that something far more sinister was going on, one of the possibilities we raised was CJD. We were steadfast in our determination to get the right diagnosis, and are now so grateful that we were.
The neurologist sent mum’s MRI scans to the team in Edinburgh who responded within half an hour to say that they were consistent with what they would expect to see in CJD. At last, we felt we had been heard and from then on we felt that mum got the care and treatment she should be. We cannot thank the Edinburgh team, especially Terri, enough. This care and treatment that would have made so much difference for us all over the preceding months. Within 8 weeks of diagnosis, mum passed away.
Mum was a strong and independent Irish woman who was taken so terribly by this disease which she fought right until the very end. We are so lucky and blessed to have had her, to love for the 75 years she was on this earth, Mum died at home in September 2022 with all her family around her.
– Cathy Wyckes
The CJD Support Network would like to thank Cathy for sharing her story. To share your story with the network, please contact us.