Italian Diagnosis Provided The Final Answer
Debbie Rendall has raised over £5K for the PSP Association. A big thank you to Debbie for letting us share her story and for all her fundraising efforts.
For Debbie Rendall, PSP is “the worst thing” that ever happened to her family.
Debbie’s mother Maureen Coates died from PSP in July 2011 after a six-year battle with the disease.
But for Maureen and her family that battle was more than just learning to cope with a terminal illness. Maureen didn’t receive a diagnosis of PSP until a year before she died. And even then she had to go to Italy to get it.
Debbie, who lives in Fife, Scotland, said: “My mum getting PSP was the worst thing that ever happened to our family. The stress is unbelievable. The really sad thing is PSP robs people of their personality and amazing energy and that was devastating to watch.”
Debbie recalls her mother beginning to experience problems with her back and a “croaky” voice in 2005. By the end of that year she had been diagnosed with Parkinson Disease.
“A diagnosis of Parkinson Disease was bad enough, “ said Debbie, “But they said there were drugs they could give her that would help her to manage the condition.”
Sadly, despite years of trying several different drugs, it became apparent that none worked for Maureen and in fact, some had side effects of nausea and dizziness which made her feel worse.
By 2007 the family began to suspect that their mother didn’t have Parkinson Disease and they started to look for other answers.
But despite repeat requests to consultant neurologists, they were told they could not get any other diagnosis on the NHS and that if they sought one privately, they would not be entitled to treatment on the NHS.
Debbie’s fears that her mother may have PSP were confirmed for her when, during a cruise in 2009, she met a family whose mother had PSP.
“They were talking about their mother and I realised they were describing the same symptoms,” said Debbie. “When I finally met their mother she was just like my mum. I realised then it probably was PSP.”
By 2010 the famly were desperate to get an accurate diagnosis for Maureen and eventually found a doctor in Italy, where Debbie’s brother lives, who agreed to see them.
“We were in Italy for a week and she finally got her diagnosis on 17th July 2010,” said Debbie.
“By then everything was difficult for her. Climbing the stairs was like climbing Everest. The huge frustration for us was that nobody could do anything to help her.”
Debbie’s father became the main carer for Maureen, but that was a role that took its toll.
“My dad was like a walking skeleton by the end,” added Debbie. “He was having to get up three times a night to help her. And the really sad thing is I felt like no doctor seemed to want to help us. It’s a sad story that we had to travel all the way to Italy to get a diagnosis. The lack of knowledge of the disease amongst the healthcare profession in this country is shocking.”
Please keep a look out for news and updates of Debbie’s fundraising efforts, thank you Debbie!
Posted on March 20, 2012, in Diagnosis, Family and PSP and tagged affects of psp, caring for psp, coping with psp, cure psp, living with psp, people who have psp, personal blog of psp, PSP, psp and me, PSP Association, psp blog, psp help, PSP symptoms, PSPA, suffering from psp, understanding psp. Bookmark the permalink. 1 Comment.