Thousands raised for ‘horrible’ disease
Greg Douglas’ bucket list is simple: Spend time with his family and enjoy the scenery in the countryside.
The Invercargill man, 67, was diagnosed with motor neuron disease in January 2014 after enduring a couple of years of extreme tiredness.
Since then the breathing muscles in his chest have deteriorated and the muscles in his arms and legs are disappearing, his wife Francesca said.
The disease was a ‘‘terrible horrible thing’’ but she was thankful her husband had a machine to breathe with, which gave him respite.
The couple were among about 1000 people who walked through Queens Park yesterday to raise money and awareness for motor neuron disease research and development.
It was the first Walk 2 D’Feet MND [motor neurone disease] event in Invercargill.
Francesca Douglas said most people lived between two and five years with the disease and her husband had had it for more than four years.
His bucket list consists of getting to Nelson this summer to see his son and spending time with his family and enjoying the scenery on their annual drives to Nelson.
The couple has five adult children and nine grandchildren.
They had planned a retirement with plenty of tramping and biking but that was off the agenda.
It was a privilege to look after him, Francesca said. ‘‘He has been a good husband and he would do the same for me.’’
Their Jehovah’s Witness faith was helping them through.
Motor neuron disease is the name given to a group of diseases that cause nerve cells controlling muscles that enable movement, speech, breathing and swallowing to degenerate and die.
With no nerves to activate them, muscles gradually weaken and waste away, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.
Walk organiser Nicola Leonard said there were about 1000 people who walked through Queens Park to raise money and awareness for research and the development.
Yesterday, about $7363.80 had been raised, but about $14,000 had been raised by Southlanders in total through Facebook and Givealittle, Leonard said.
There had been heightened awareness of the disease since the death of well-known Southlander Peter Ridsdale, but Leonard said
MORE ABOUT MND
MND is an uncommon, but by no means rare, disease. The number of people living with MND at any one time is about one in 15,000
MND can affect adults at any age but most people diagnosed with MND are over the age of 40, with the highest incidence occurring between the ages of 50 and 70.
Most people with MND live for 20 to 48 months after symptoms begin. Five to 10 per cent of people with MND live for 10 years or more.
Each week MND will cause the death of two people in New Zealand.
Walking can become difficult, and everyday tasks can become challenging.
Emotional responses may be affected
Difficulties may be experienced when eating, drinking and speaking, and it can become hard to breathe if the respiratory muscles become affected. * Information from MND New Zealand she believed motor neuron disease was becoming more prevalent in the south.
‘‘There just doesn’t seem to be anything that causes it.’’
Medication was available which could ease the symptoms and slow the disease down a little, but many people chose not to use it because of its side effects, she said.