She can no longer talk but she can still cook, sew and ride her reclining e-bike.
When former nurse Sally Sims was looking after patients with “devastating” and fatal motor neurone disease, she never thought she would one day face the same diagnosis.
But two and a half years ago, the 76-year-old started slurring her speech, getting leg cramps and twitching muscles.
The Taupō retiree can no longer talk after being diagnosed with bulbar motor neurone disease last year.
“The muscles in my neck have collapsed, so I walk around bent in half.”
Sims shared her story for Motor Neurone Disease Awareness Month in June. Motor neurone disease is a fatal, rapidly progressing disease that attacks the nerves that control movement so muscles no longer work. There is no effective treatment and no known cure.
It affects more than 400 New Zealanders at any given time, with an average life expectancy of 34 months, Motor Neurone Disease New Zealand says.
Sally Sims was diagnosed with motor neurone disease in August 2022. Photo / Dan Hutchinson
In written responses to questions from theRotorua Daily Post, Sims, who has lost her speech, said her first symptom was slurred speech in January 2021. She was referred to a speech therapist and was booked for a swallow test. This showed a weakening of the sphincter in her throat, she said.
“I then started to become breathless and became very weak.
“My muscles in my arms began to twitch, barely noticeable at first, and then I was getting leg cramps.”
In August 2022, she received her diagnosis and was “extremely upset”.
Sims said she was normally a “very active” person, going to the gym three times per week and cycling around 100km per week.
But now, it takes her “a lot longer” to do things.
“We have sold the family home and moved into a retirement village.”
Sims said her speech was “gone” so she used a pen and paper, her iPad and her phone to communicate.
“I now can’t control my saliva, so [I] need to wear a feeder when I eat.”
Sims said her hands were weaker - eating was difficult and it was hard to clean her teeth.
“I get very tired and breathless and have spread my household chores over seven days. I can’t hang out washing, sometimes getting dressed is an issue, [I] can’t walk more than about five minutes.”
She sometimes experienced “severe neck pain”, which could be managed with medication.
But Sims said she could still do the cooking, vacuuming, gardening and general tidying up. She enjoyed reading, sewing, going to the gym, riding on her reclining e-bike and going out for coffee with friends.
Sally Sims lives with motor neurone disease but that hasn't affected her positive outlook on life. Photo / Dan Hutchinson
However, Sims said there was “no cure”.
“My diaphragm will get weaker until I go into respiratory failure. I will get weaker and weaker and I will end up in a power chair.”
Sims said the care she was getting from Rotorua and Taupō Hospital had been “remarkable”.
“I have been supplied with a cough machine and two BiPAP machines in case one fails. I have been assessed for a power chair and it is on the way. I’m waiting for a suction toothbrush which will save me [from] having stains on my clothes.”
She received care from a speech therapist, dietician, neurology and respiratory staff, hospice staff and Motor Neurone Disease New Zealand.
“All [of] these people communicate regularly so they each know what is happening to me. It is very reassuring.”
Reflecting on her career, Sims said she was working at the hospice in West Auckland and came across a few motor neurone patients.
“I felt powerless to help them so decided to get some education.”
Sims said she went to Melbourne and worked with the consultants in the neurology ward.
Once she returned, she set up an education programme for nurses in Auckland who worked with motor neurone patients, saying her trip gave her the “confidence” to do so.
Her last full-time job was working as a rural nurse specialist in Haast, where two of her patients suffered from the disease.
Asked what it was like to know what to expect with the disease, given she had looked after patients with it, Sims said: “It is a good thing ... Because I know to ask for things before I need them.”
However, “we need more money for research to find a cure, and to give the patients equipment for a better quality of life for the life they have left”.
Motor Neurone Disease New Zealand is a charity focused on improving the quality of life, funding research and campaigning for people affected by the disease. It was asking New Zealanders to raise funds by hosting a “cuppa tea” or taking on the ice bucket challenge.
Chief executive Scott Arrol said the ice bucket challenge came about as people with motor neurone disease got to the stage where they were “locked” in their body.
“Your mind’s okay but your body has frozen up. The idea of the ice bucket challenge was for a matter of seconds, to have that feeling of being frozen.”
People could also host a “cuppa tea” event to fundraise, he said.
The challenges were about raising awareness and funds as it got a “very small” amount of funding from Whaikaha - Ministry of Disabled People.
“The work that we do and the services we provide are pretty much fully funded by the generosity of our fellow Kiwis.”
Arrol said it provided community-based support services for people who had the “devastating” disease and their whānau. This included education, advocacy, support and connectivity to help them navigate the health system.
His message to the community was to “get stuck in and help us”.
“It’s a small thing to do for people who are going through a massive disease.”
It attacks the motor neurones, or nerves, in the brain and spinal cord. Messages gradually stop reaching muscles, causing the muscles to weaken and waste away. This gradually robs the person of the ability to walk, eat, talk, swallow, and breathe.
In New Zealand, three people a week will receive a diagnosis. A further two people will die from it each week.
The disease can affect adults at any age but most are over the age of 40, with the highest incidence occurring between the ages of 50 and 70 in New Zealand.
In about 90 per cent of cases there is no known family history.
Source: Motor Neurone Disease New Zealand
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.
