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‘This can’t be what I’ve got’

Motor Neurone Disease (MND) is an illness which causes the muscles that enable us to move, speak, hug, hold, eat, and breathe to gradually stop working. More than 350 Kiwis live with MND, including Gisborne’s Lynda Dayberg, who told her story to The Gisborne Herald’s Wynsley Wrigley.

We're all getting older and slower.

At least that's what Lynda Dayberg, 62, thought when she noticed she was struggling to run, shortly after taking one of her grandchildren for a bike ride.

Other “little things” were happening, or more accurately, not happening.

A fall in late 2017 resulted in a herniated disc which probably served as a distraction to what else was occurring, she said.

Surgery in September 2018 for the herniated disc was a success but her bodily functions continued to deteriorate. The surgeon treating her back injury then referred her to a neurologist for further investigations.

The Hamilton-based neurologist diagnosed her with MND in April 2019.

It was then Lynda realised she had probably been suffering from the disease over the previous 18 months to two years.

She did not know what motor neurone disease was.

She was told there was no treatment or cure.

It would be more about managing the symptoms while maintaining comfort, independence and quality of life.

The MND New Zealand website proved to be a valuable source of information, “giving you as much information as you want to know”.

“I thought this can't be what I've got.”

She checked with doctors.

“It was unbelievable to me, I thought I was going to get better,” she said.

A very broad support team

The website put her in touch with MND New Zealand co-ordinator Jane Kay.

“She was very helpful in making sure we went to the right places to get support.

“Between us (Lynda, Hauora Tairawhiti and MND New Zealand) we've set up a really strong team.”

Electric chairs, ramps, a hospital quality bed, and other modifications in her house have proved vital in helping with her quality of life.

“There's a lot of help available,” said Lynda.

“It's up to you whether you take it or not.”

Geneva Healthcare caregiver Annie Meredith said there was a very broad team supporting Lynda, including surgeons, a physiotherapist, occupational therapists, speech and language therapists, a dietitian and others.

Daughter Millie Cook said the TalkLink Trust had been fantastic.

“They have provided an iPad and have helped Mum to record her own voice and phrases so if the time comes when she is no longer able to communicate verbally, she will be able to use the iPad.

“This is important to Mum because she wants her grandchildren to hear her, rather than a ‘robot voice'.

Surgeons have inserted a “discreet” tube into Lynda's stomach to assist with eating and drinking when swallowing difficulties arise.

Lynda said she wanted to know what would happen in the future.

Hospice Tairawhiti has been very supportive although for now Lynda has chosen to remain at home.

“I don't want to know everything, but I need to know what is ahead of me so I can plan.

“So when I need that help, it will be there.

“Jane has also helped put that in place for me.”

Annie Meredith said Lynda was practical and trying to be positive.

“I need to be positive to enjoy what I've got,” said Lynda.

She says being prepared has helped her to cope.

Her children Anker, Amber, Raymond and Millie had been wonderful, she said.

“I couldn't do it without them.”

They have set up a roster for nights as Lynda now needs help to get in and out of bed.

Health and disability service provider Life Unlimited, together with Geneva, has provided care for her during the day.

Family and friends have all “rallied around”.

“When you're diagnosed with MND, it's about comfort and quality, and friends and family have all helped,” said Lynda.

Motor Neurone Disease awareness and fundraising walk

Tomorrow Lynda Dayberg and her family join other centres around New Zealand in hosting a Motor Neurone Disease awareness and fundraising walk.

The Gisborne walk starts outside Bayleys Real Estate in Reads Quay at 10am. Walkers make their way to Midway Surf Lifesaving Club and then return to Bayleys.

The public are invited to take part in the walk, (bring your own water bottle), or to support the collectors with their koha buckets. Wear blue — the official MND New Zealand colour. There will be spot prizes.

The walk aims to connect and empower people and families who are facing the enormous challenge of MND.

Lynda Dayberg wants readers to know MND New Zealand provides a quick response to people such as herself. They provide information, direction and co-ordination.

“It’s important that people like me know where to get this help”.

REMAINING POSITIVE: Lynda Dayberg says friends, family, caregivers and agencies, and her own positive attitude, are vital in ensuring comfort and quality of life while battling Motor Neurone Disease (MND). She invites the public to support her MND awareness and fundraising walk tomorrow morning. Picture by Paul Rickard

  1. Lynette Valk, Blenheim says:

    Thank you for sharing your story. We have a very dear friend who has MND – we are helping out and trying to keep her smiling.

  2. Frances, Wellington says:

    Best wishes Lynda. Make the most of what you are able to do while you can do it. Thanks for sharing your story.

  3. Valma Robertson, Blenheim says:

    MND Support Workers are just that – they will help you source the right care, which takes away pressure from you. Reading your story it sounds like your needs are being met for the moment. A bidet installed over your existing toilet would be marvellous if you lose the use of your hands. And a hoist for your bed to your wheelchair when it becomes dangerous for you to be standing, even with the help of carers. I nursed my husband for 10 years and it was very tiring but he passed away peacefully, which was a blessing for everyone. My very best wishes Lynda for your journey.