Parkinson’s is more than ‘the shakes’, says Whangārei carer turned patient

Elizabeth Swift helped Parkinson’s patients for years after the death of her husband Don and has since been diagnosed with the condition. Photo / Denise Piper

Having a positive attitude and keeping busy are key to living well with Parkinson’s, according to Whangārei resident Elizabeth Swift.

The 80-year-old knows more than most about Parkinson’s: she cared for her husband Don for nearly 30 years while he battled the condition, with the pair helping form the organisation Parkinson’s Northland.

Then, in a cruel twist of fate, Swift was diagnosed with Parkinson’s two years ago.

“I cheekily said at one meeting, ‘is it catchy?’ I don’t think it’s fair that I got it.”

Parkinson’s is not contagious but is the fastest-growing neurological condition in the world, caused by insufficient quantities of dopamine in the brain.

More than 12,000 Kiwis have the progressive illness and while there is no cure, symptoms can be managed with treatment and medications.

Swift said many people think of Parkinson’s as something that causes shaking.

But many patients do not get shakes but suffer other motor symptoms such as stiff muscles and loss of balance, she said.

Equally important are non-motor symptoms including sleeping problems, apathy, depression, blood pressure problems, and constipation.

Swift recalls how her husband Don, who played the mandolin-banjo and violin, could be heard playing his instruments in the middle of the night to try to ease his insomnia.

Don still managed many feats with Parkinson’s including completing the 78km Heaphy Track, a six-day tramp.

Don and Elizabeth Swift got involved with Parkinson’s Northland, now called Northland Red Tulip Group, when it formed in 1992.

Movement and social activities are an important part of Parkinson’s treatment, said Northland carer Jo Boston, who is a board member of Parkinson’s New Zealand and secretary of Northland Red Tulip Group, the new name for Parkinson’s Northland.

Northland Red Tulip Group offers different activities every day for its 300 to 400 clients, including a walking group, hydrotherapy, martial arts, ping pong for Parkinson’s and carer support groups.

Swift said the huge need was why she and Don got involved with Parkinson’s Northland, which formed in 1992 led by Paula Carpenter, Dawn Billington, and Alex House. Don was the treasurer for many years and she helped run activities and events.

The pair were awarded life membership to the Northland branch in 2004 and a Parkinson’s New Zealand award in recognition of outstanding service in 2013.

Don sadly died in June 2014 and was sent off with a packed funeral, Swift said.

Elizabeth Swift and Jo Boston encourage those wanting to learn more about Parkinson’s take part in a one-day seminar in Kerikeri on April 11. Photo / Denise Piper

She continued helping with the organisation, including being awarded a Ministry of Health volunteer award for outstanding achievement in 2017.

While her own diagnosis could be considered unfair, Swift’s years of experience with Parkinson’s have helped her know the importance of keeping upbeat.

“You can go through life and be the ‘poor me’ person but it’s not going to do you any good.”

Those wanting to find out more about Parkinson’s can take part in a one-day seminar on April 11, World Parkinson’s Day.

The seminar at Cornerstone in Kerikeri includes a talk by leading neurologist Dr Barry Snow, a carers’ session, panel discussion, trading tables and cooked lunch.

The cost is subsidised at $35 each for people with Parkinson’s and their carers, with a bus from Whangārei at a cost of $20 each. Register interest by April 4 to Vicki Sadgrove 027-268-4973 or Kim Ward 027-530-6221.

Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.