Anthea Harvey thought a lingering change to her voice was the tail end of a virus. Instead, it was the first sign of a life-limiting diagnosis.
Eighteen months ago, a virus left Anthea with a nasal tone, prompting a visit to the doctor. What followed was a series of referrals that led to a neurologist delivering what husband Brian calls the “black spot” – a diagnosis of motor neurone disease (MND).
“It was a huge shock,” Anthea says.
The couple, who had recently moved into Motueka after 20 years running Bellbird Lodge in Kaiteriteri, drove home in silence, processing the news.
Anthea is one of only 23 people in Nelson Tasman and about 400 in New Zealand living with MND, an incurable and rapidly progressing neurodegenerative disease affecting the brain and spinal cord. Typical life expectancy after diagnosis is two to three years.
Also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, MND usually begins in the feet and legs. For Anthea, it came for her voice.
A lifelong singer, she performed in musicals and operatic productions in her native England, and since moving to New Zealand 25 years ago has been part of a church choir. In recent months, MND has slowed and thickened her speech and reduced her projection.
Although the ebb will likely continue, she is grateful every morning when her legs swing from the bed and her feet touch the floor.
A five-kilometre walk before breakfast gets the blood pumping, and Anthea says this is something she hopes to continue for as long as possible.
“A lot of people, by this stage, are in wheelchairs.”
Her brain is sharp as ever, but her slurred speech has brought unexpected challenges.
“On occasions, people have treated me as if I’m stupid, which is really hurtful,” she says.
She is determined to live life to the fullest, and encourages others to do the same, saying that you never know what is around the corner. For her and Brian, that meant a trip to the United Kingdom, France and Italy last year.
She takes medication that might buy her a few extra months and works with various specialists including speech, occupational and physical therapists. Through Talk Link, recordings of her voice have been used to recreate it, ensuring she will still be able to communicate if her speech is lost entirely.
She says the health care system has been fantastic, and she sings the praises of Motor Neuron Disease NZ and her support advisor Jasmine, who is in regular contact.
“It’s my faith, and the support of my friends and Brian, and the MND organisation, that keep me going, actually.”
She made it clear early on she would not retreat from life.
“I’m going to fight it with everything I have, and hopefully, I’m doing that.”
Last year, Anthea raised $1500 for MND through a 5km walk fundraiser. This weekend, her supporters are baking for a Cuppa Tea with MND event as part of National MND Action Month.
The community is invited to St Andrews Church lounge, 64 High Street, this Saturday, 13 June from 10am to 12pm, to share kai, conversation and support efforts to fund research and care for those living with MND.
