Rare condition affects ability to communicate
Family seeks help for neurodegenerative disease remedy
It was about four years ago when Joan Ashcroft noticed her speech had been slurred for two days. She tried to ignore it, and, not wanting to worry anyone, she hid it from her family for almost a year.
The slurred speech was progressively getting worse, so almost a year later, in September 2020, she went to the doctor who referred her to a neurologist.
But it wasn’t until January 2021 that she was able to see the neurologist at Kenepuru Hospital, and she wasn’t actually diagnosed until December.
It was after numerous tests and scans that Joan was diagnosed with the very rare neurodegenerative disease primary progressive aphasia (PPA).
It was a complete shock to her, and she said the diagnosis saddened her.
PPA is a condition that affects the ability to communicate, meaning people with the condition can have trouble expressing their thoughts and understanding or finding words.
The condition, which is classed as a rare type of frontotemporal dementia, has three variants, and Joan has the non-fluent/agrammatic variant.
Symptoms of this variant include poor grammar in written and spoken language, trouble understanding complex sentences, using grammar incorrectly, and problems with speech.
Joan, who lives in Paraparaumu, is still in the early stages of PPA, so her only current symptom is problems with speaking, but she said she expects it to progress further.
Not only will her speech deteriorate, but she said she will likely develop symptoms of dementia too, including losing her memories.
The condition affected other aspects of her life too, and her daughter, Johanna, said that her previously very outgoing mother had lost a lot of her confidence.
“She was very social before this,” Johanna said.
Joan also had to quit her job as a teacher at Our Lady of Kāpiti, a job which she had held for 15 years.
She now works part-time in the school’s library, but, as her condition progresses, she could lose this too.
Luckily her son, Daniel, found out about stem cell treatment in Whangārei which is known for its high success in people with similar conditions to Joan’s.
While it will not cure her, it is hoped that it could help to slow down the progression of the condition.
But it’s not cheap, with the clinic requiring a minimum of two sessions, and each session costing $12,000.
They’re not sure how many sessions she will need either, so Daniel created a Givealittle page with a goal of $200,000 to go towards her treatments.
“We don’t know if it will need to be three-monthly, or six-monthly, or how many she’ll need,” Johanna said.
Joan hopes they can raise enough for the first session, which she is aiming to have in September.
There are a few things helping her to cope though, including her closeknit family, her religion, and the constant therapy she does through several international universities including the University of New Mexico and the University of Sydney to help them understand the disease.
All her family is based in Kāpiti, with her parents living in Waikanae, her husband Greg living with her, and her children, Johanna and Daniel, living close by.
She sees them all frequently, and her two eldest grandchildren, Caeliah and Olioni, spend every Saturday night sleeping over at her house.
Joan has a fourth grandchild on the way, which she is really looking forward to.
She was supplied with an iPad with TalkLink on it, an application that can show her phrases to read out, and as her condition progresses it can even act as her voice. Joan had raised more than $8500 at the time of writing, merely $3500 away from getting her first bout of stem cell treatment.