Often mistaken as a “white man’s” disease, Parkinson’s has deeply impacted one Pacific family – sparking their journey of faith, support and service to the Pacific Parkinson’s community.
Parkinson’s is a progressive neurodegenerative condition caused by a lack of dopamine, leading to changes in movement and mood over time.
Yet for many Pacific families, the disease is often underdiagnosed and misunderstood.
Every month, at the Wesley Methodist Church in Papatoetoe, a group of strong, resilient individuals gather – united by one shared experience.
Greeting each other with bright smiles and warm, friendly gestures, they are the faces of Aotearoa NZ’s first Pacific-focused Parkinson’s support group.
Aloese Lefono founded the group in 2019 in response to the limited resources available for Pacific people with Parkinson’s.
One of those affected by Parkinson’s is her husband, Leituala Fu’a Lefono.
Speaking in Samoan, Leituala says he was diagnosed at the age of 40.
“Very young. Then I thought to myself, I can no longer do anything for my family in the coming years. If I was living in Samoa with Parkinson’s, I’d be considered useless as I’m unable to do much on my own.”
Before he was diagnosed, Leituala was already experiencing symptoms such as muscle pains, stomach aches and tremors. They sought help from traditional Samoan healers in search of a cure, but nothing worked.
It wasn’t until they were referred to a specialist that they learned about Parkinson’s – a condition they knew little about.
Speaking in Samoan, Aloese says she had to ask the doctor to explain what Parkinson’s was.
“The doctor said – you live with it. I said what does that mean? And he explained, the longer you live, the longer the disease lives with you. There is no cure.”
In many Pacific languages, there is no direct translation for ‘Parkinson’s’, and in Samoa, there are no medical specialists for the disease, making diagnosis, treatments and understanding difficult for families.
Aloese says she created the group because most of the Parkinson’s meetings they attended were full of Palagi people. It wasn’t until she asked if there were other Pacific people affected, that she was told: “There are a lot.”
The low attendance of Pacific people with Parkinson’s raised important questions about access – particularly transportation and awareness of existing support groups.
Determined to change this, Aloese sought a meeting place in the heart of Papatoetoe, making it more accessible for Pacific families.
What started with only 2 – 3 people has now flourished to attendees of more than 10.
But despite her efforts, there were still barriers preventing others from attending.
“I try to pay for their taxis, with the help of other keen volunteers,” Aloese says.
“Even some doctors pay for taxis with their own money to help bring some Pacific people with Parkinson’s, who don’t have access to transportation.
We also suggested the St John’s shuttles as they are paid for by donations. But I think it’s the waiting times that are too long for them.”
Beyond transportation, another obstacle is social isolation. Many people with Parkinson’s experience judgment from the public due to the lack of awareness of the condition.
“No one can truly feel at ease with this disease because of how painful some symptoms are, and even facing public scrutiny is difficult,” Aloese says.
“Sometimes when they walk somewhere, people will laugh or stare, and they whisper, ‘they look so weird’,”
“It’s those little things that prevent them from wanting to go anywhere, even to church or family gatherings.”
At their monthly meetings, a Parkinson’s educator and a researcher are present to give in-depth information on what Parkinson’s entails. Attendees are encouraged to share their experiences and ask questions about any symptoms they are struggling to understand.
With Parkinson’s being a complex condition, symptoms vary from person to person. Early symptoms may include slight tremors and gradual slowness in movement, whereas severe symptoms include freezing – a temporary inability to move, persistent shaking, muscle aches, fatigue, depression, and anxiety to name a few.
Most people with Parkinson’s manage their symptoms through medication, staying active, and support and encouragement from family and friends.
While most Parkinson’s cases have no known cause, researcher Christina Buchanan is studying a genetic link related to early-onset Parkinson’s, specifically caused by changes in the PINK1 gene.
PINK1 is a protein that protects mitochondria – the “energy generators” inside our cells. When mitochondria are damaged, PINK1 identifies and fixes the issue, but if our PINK1 doesn’t work, this will cause mitochondria build up leading to the loss of brain cells that regulate movement.
Christina’s research grew out of an observation by neurologist Dr. Richard Roxburgh, who first discovered the common gene change in a Tongan individual with Parkinson’s and a Samoan individual with Parkinson’s.
Christina also notes that Parkinson’s is often mistaken as a “white man’s” disease, which is why there’s low awareness and diagnosis in Pacific communities.
“That’s what people usually think of and that leaves out a whole lot of people that Parkinson’s does affect,” Christina says.
“People are less aware that it affects females as well as males, and then in our Pacific group, when they’re told for the first time they have Parkinson’s, it almost doesn’t compute because they thought it was a Palagi disease.”
Her findings revealed that the genetic change is more prevalent among Pacific individuals with Parkinson’s – for every 100,000 people, around 77 of the 160 Pacific people with Parkinson’s will be caused by PINK1, compared to just 1 or 2 out of 223 European people with Parkinson’s.
“It’s a much lower number of people but we believe a large proportion of that is a result of this genetic type of Parkinson’s,” researcher Christina says.
“And that’s why we’re focusing on that because if we know what is causing it, then we know what we can target to hopefully come up with a targeted therapy and cure.”
The PINK1 gene change identified in most Pacific people with Parkinson’s is the L347P variant.
“So what we’re seeing is that this variant has come from the Pacific. It only affects people in the Pacific,” Christina says.
“There are other PINK1 variants that affect people worldwide but this particular variant is only in, so far been found in Malaysians, Philippines, Timoro people, in Guam, and now Samoans, Tokelauan and Tongans.”
Leituala is one of the Pacific people with Parkinson’s affected by the PINK1 variant.
“This condition is not easy,” Leituala says.
“We only have 3 kids – not a lot, but it’s tough when I look at them. I don’t sit well because I feel this sadness about not fulfilling my role as a father.”
Leituala used to work at Fisher & Paykel and was the family’s breadwinner. But when his symptoms worsened, stepping away from work was difficult, which led to his wife to take lead.
“This has caused some problems for our family, you know, the lack of being able to contribute. But I’m grateful that my two boys are grown now and have moved out with their own little families. Now it’s just me, my wife, and our daughter, [Nu’u]. That’s when things became a bit easier.”
“These are the thoughts I sit with every day, but I’m thankful for my Superannuation pay – that’s been a massive help for me and my family.”
It’s these raw emotions and daily struggles that reinforced the need for a support group tailored to Pacific people with Parkinson’s.
Grounded in her faith and culture, Aloese embodies the true meaning of the Samoan proverb, “o le ala i le pule, o le tautua” – the path to leadership is through service.
Earlier this year, she was honoured with the 2024 Ministry of Health Volunteer Award for Pacific Health Service – a recognition she humbly dedicates to God.
“I don’t provide this service to get recognition. I do it because I feel for those who are affected,” Aloese says.
“I see their pain in my husband, the head of our family.”
“If someone finds comfort in the service I provide, then praise God. I do it for His purpose. I give it all my strength so that it’s successful, and so those who are affected can find joy in it.”
Next month, Aloese and her group are gearing up for a Parkinson’s awareness day, aiming to shine a spotlight on the importance of care and treatment for our Pacific community living with Parkinson’s.
“I just hope it helps our Pacific community understand what the disease is and its symptoms, so they can treat our Pacific Parkinson’s people nicely,” Aloese says.
“They have feelings as well, so just show them some love and care, and try to keep them happy.”
For Leituala, his message is clear. Guided by the Samoan proverb, “o au a matua, fanau,” – children are the treasures of their parents, Leituala draws strength from his love for his family.
“O le malosi o lo’u loto, o le fiafia na o lo’u aiga, – the strength of my heart is the happiness of my family. If you are ailing, who else is coming to take care of your family,” Leituala says.
“You have to have a gut… with strength, you provide everything, not the family. Don’t be discouraged!”
