Walk 2 D’Feet MND event on Sunday
More than 200 people hit the pavement last year to raise money for Motor Neurone Disease (MND).
This year’s annual Walk 2 D’Feet MND fundraiser is back on again, with the 3km circular route heading off from the Napier Sailing Club on Sunday, November 11 at 9.30am.
The walk takes place all over New Zealand to raise money for the MND Association, which supports people living with MND. MND is an uncommon, but by no means rare disease, with more than 300 people in New Zealand living with the disease.
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.
Napier resident Dave Waugh was diagnosed with MND around five years after symptoms began.
“I noticed in late 2011 that after a walk my leg became tired and threw itself in a spastic motion the further I went. That was only the beginning and the doctor looked at likely causes until he began sending me to specialists but they ruled out each one,” Dave says.
He eventually went to a neurologist in 2014 and was sent for MR scans, ECGs and countless blood tests.
“I was passed back to HB Neurology who carried out more tests before sending me to Wellington. They began a series of blood/ protein transfusions that didn’t work and then steroids and mild chemotherapy.”
Dave says after six months they discovered that was a wrong diagnosis and after a three month retraction in 2016, three more neurologists and copious ECGs, it was finally diagnosed in 2017 as a rare strain of MND — PLS.
“This demonstrates the extreme difficulty of diagnosis.”
After researching the disease, Dave found there is no cure. It is a disease that destroys the neurons in the brain that conveys instructions to the muscles so they can function, with ever increasing difficulty with speech, swallowing, and dexterity of balance and manipulation.
“It doesn’t affect the inner cognition function. To put it bluntly, your brain is captured by a body that is forever fatigued and wearing down. It will eventually stop you eating and breathing, and the prognosis is there is nothing you can do about it because we don’t know what causes it.”
Dave believes everyday life for MND sufferers is to get through the day best you can.
“Ideally with the help of a caregiver you try to stretch out the symptoms and live longer than your predictions. It’s a bit gruesome but as Professor Steven Hawkins, who recently died of MND says, humour in the form of skits, puns and teasing exercises the brain and ups the endorphins — which is good for life. It’s surprising that once you have accepted it you don’t become morbid and you can go find memories and stuff to put in your bucket.”
■ Walk 2 D’Feet MND, Sunday, November 11, 9.30am, Napier Sailing Club. Registration and merchandise pick up from 9.30am. Dogs on leads are welcome — they may even like their own T-shirt. Auction, spot prizes and food and drinks available. All Walks 2 D’Feet MND are wheel-friendly for wheelchairs, prams and strollers. Kids are welcome. Wet or fine, we go ahead. Cost $15 or $10 if you do early online registration. Visit https:/ /mnd.org.nz/ or www.facebook.com/ events/2191087927794662
‘To put it bluntly, your brain is captured by a body that is forever fatigued and wearing ’ down. DAVE WAUGH