Living with MS
Audrey Beuth has an undiagnosed neurological condition. Heather Holloway is the carer for husband Rod, who has had multiple sclerosis (MS) for about 30 years. Paula Croker was diagnosed with MS when she was 40. But she had already lived with the intermittent onset of symptoms for a decade. They represent three aspects of the work of the Gisborne East Coast MS Society, which is recognised in the annual MS Awareness Week that ends tomorrow . . .
Working with them are society field officer Christine Beard and secretary Judy Livingston.
Audrey was sent to a physician 31 years ago when she fell over for no apparent reason. She was referred to a neurologist, muscle was removed from her arm, and muscular dystrophy was suspected but not confirmed.
It seems she has a neurological mitochondrial illness, undiagnosed.
Neurological disorders — diseases of the brain and spine and the nerves that connect them — can be hard to pin down.
Over 600 diseases of the nervous system are known to exist.
As the MS Society acts as an umbrella body for those with neurological conditions not covered by an aid organisation, Audrey joined the society and is grateful for the benefits it provides.
“I enjoy meeting with other people with similar conditions,” she said.
“The social get-togethers, people wanting to help each other, the therapy sessions . . . I find it all helpful.”
Her condition manifests as a weakness of the muscles and limbs.
“Sometimes it looks as if I’m walking drunk,” she said. “It’s always there, more so when I’m tired.”
Heather organises her days around the things she does to make Rod’s life easier.
“You can’t just think you’ll go away for the day,” she said. “Rod still needs someone to do his lunch. You’re responsible for another person. It’s about caring, and being kind and patient. You can’t just get out of bed as you’ve always done and go about your day; you have to keep that person in mind.
“We live in town now, but we used to be out at Waerenga o Kuri. Rod was a painter and did some truck-driving, but he hasn’t been able to work for 20 years.
“He has a walker, a walking stick and a mobility scooter to get about.”
Paula had MS symptoms in her 20s and 30s — extreme fatigue, falls for no reason, double vision, things being dropped. Then by the time she got to the specialist the symptoms would have gone.
When she was 40 she had a bad attack.
“I thought I’d had a stroke. I was in a bad way for a long time. My speech was affected. I couldn’t walk — I had to learn all over again. I could see only in black and white. It took me a long time to get over it.”
A physician diagnosed MS and told her he had suspected her earlier problems were symptoms of the disease.
Paula decided to be proactive with her health. Her doctor suggested she visit colour therapist Errol Burr (now retired).
“He seemed to get me right,” she said.
“Chronic fatigue — that was where Mr Burr was the answer.”
She didn’t stop there.
“I did a lot of reading — positive books. I loved gardening; I’d buy plants and sit and play in the garden. I do a lot of photography.
“I still get relapses but I’m older and wiser. I know if I have a lot of stress, the symptoms come on. I learned to read my body.
“My husband Ian is supportive (he’s on the MS society committee). For the past three years we’ve had a motorhome, and when I’m not well he takes me away and puts me by a river or the sea.
“I’ve found lots of things to get me through.”
Having an MS field officer is a big help, Paula says.
“She checks on us all and makes regular home visits.”
Christine has been the MS society field officer for 10 years. An enrolled nurse, she had no MS-related experience when she applied for the job.
Her research alerted her to the likelihood of depression being among the issues for people with MS, and she set out to make the most of times when MS society members gathered.
Morning teas, Christmas and midwinter Christmas parties, therapy pool sessions, two-monthly evening group meetings for working people with MS and their carers, garden parties and regular meetings of the society were examples.
Christine said trust and confidentiality were important aspects of her work.
“For the first five years I made myself available 24/7,” she said.
“But I’m not the first port of call. The GP, ambulance and family are the first.
“Gaining a person’s trust is a biggie for me, and getting the families involved. I advocate for people with MS; make sure they have the equipment they need to make their lives easier; refer them to physiotherapists, occupational therapists and GPs; and accompany them to Work and Income.”
Christine serves 26 people with MS or another neurological condition in an area stretching from Te Araroa to Wairoa and inland to Matawai.
Judy has a management background — in community development at Gisborne District Council for over 13 years, with the Cancer Society and with CCS Disability Action.
Now she splits her time between Gisborne Stroke Support (20 hours a week) and the MS society (up to 10 hours).
With the Gisborne Brain Injury Association in the office next door, she finds the three organisations have a synergy in their client base that makes the exchange of information mutually beneficial.
Judy has organised “charity knits” and arranged for the Puha Women’s Institute to do a morning tea fundraiser. She has found her work and community connections useful in bringing organisations together and promoting the MS Society.
To learn more about MS, go to https://www.msnz.org.nz/