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The partner of US actress Sandra Bullock has died following a three-year battle with amyotrophic lateral sclerosis.
“It is with great sadness that we share that on August 5, Bryan Randall passed away peacefully after a three-year battle with ALS,” the 57-year-old’s family shared in a statement.
“Bryan chose early to keep his journey with ALS private and those of us who cared for him did our best to honour his request.
“We are immensely grateful to the tireless doctors who navigated the landscape of this illness with us and to the astounding nurses who became our roommates, often sacrificing their own families to be with ours,” his family added.
Jackson Lee/GC Images/Getty Images
Sandra Bullock and Bryan Randall are seen at ‘Oceans 8’ World Premiere on June 5, 2018 in New York City. (Photo by Jackson Lee/GC Images)
So what is ALS, who does it affect, and how do you treat it?
Amyotrophic Lateral Sclerosis is the most common type of Motor Neurone Disease. It’s a fatal, rapidly progressing disease that affects the brain and spinal cord.
It destroys the nerves that control your muscles and over time people lose the ability to move, to talk, and eat – all while their mind stays intact.
“You are locked in a failing body and there is not a whole lot you can do about it, Motor Neurone Disease New Zealand’s marketing and fundraising manager Laura Huet said.
It was the same disease that Stephen Hawking lived with for more than 50 years, but Huet said his case was “extraordinary”.
The average life expectancy for people with ALS in New Zealand was less than three years.
JOHN KIRK-ANDERSON/STUFF
Jo Cherry talks about living with the knowledge she has the gene mutation for motor neuron disease, the illness that killed her father. (First published October 2020)
Who gets it, and why?
There are about 400 people with Motor Neurone Disease in New Zealand at any given time, the charity said.
An average of three people are diagnosed each week, while two people die.
Huet said there was a misconception it was an older persons’ disease, but in New Zealand 35% of the people diagnosed with ALS are younger than 65.
The youngest involved with Motor Neurone Disease New Zealand was in their early 30s, while the oldest was in their 80s.
“ALS is caused by the gradual death of the motor neurones that allow our muscles to move. But we don’t know why those motor neurones die or how to stop, slow or reverse it,” she said.
Huet said New Zealand had a higher rate of people affected by the disease per capita compared to the rest of the world.
And it also seemed to increasingly affect young people.
Why? Researchers didn’t know.
She said it was “such a complicated disease” and there were still a lot of unknowns despite plenty of time and money being thrown into research.
What are the signs?
People might notice they were stumbling or tripping over their own feet, Huet said.
Another common initial symptom was losing grip in your hands. People might find it hard to hold a pen, with a loss of strength in your fingers.
She said a diagnosis tended to be a long process of elimination, and involved lots of different tests.
This could be frustrating given the rapid progression of the disease and often by the time people received a definite diagnosis, their condition had begun to deteriorate.
How is it treated?
There is no cure for ALS, and the average life expectancy for someone diagnosed in New Zealand was only 34 months.
Current treatments are only able to give people between three and six months, controlling symptoms rather than slowing or stopping the disease.
“It’s about making sure they have the best quality of life and time with families.”
And there were lots of adjustments.
Bruno Vincent
Stephen Hawking lived with ALS for more than 50 years, but his case was “extraordinary”.
“As those muscles stop having that function then you have to go into a wheelchair, and then you have to think about house modifications.
“As the months go on you end up being entirely dependent on other people.”
It was a difficult diagnosis to come to grips with, Huet said.
Most of what the charity did day-to-day was advocate for people on behalf of families, helping them to get fast access to health services and equipment.
Because the disease was so rapidly progressing, the system often couldn’t provide help fast enough.
Researchers often said they would have a cure in this lifetime, Huet said. But current treatments couldn’t offer more than a year.
Motor Neurone Disease New Zealand funded research, and was involved in a handful of projects looking at treatments and the cause.
The charity did not receive funding and was almost entirely dependent generous Kiwis. People could donate here.
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