Twitches first sign of battle with disease
A few years ago Peter Macklow felt twitches in his arms, but now he feels as if his body is dying in his own skin.
The 68-year-old from Waipukurau lives with motor neurone disease, where the body’s nerve cells which control the muscles that enable us to speak, move, eat and breathe slowly degenerate and die.
A former stock buyer for meat companies, Macklow became a full-time farmer in the mid-1990s, running sheep and dry cattle on the farm attached to his Central Hawke’s Bay house, which he shares with his wife Mary.
Five years ago, he began noticing twitches in his arms when he would pull lambs out of his shed, which he said felt ‘‘like shocks on an electric fence’’.
Doctors suggested he may have rheumatic arthritis, but as the twitches spread to other parts of his body and, after the advice of one of his daughters who works in the medical profession, he decided to see a neurologist.
‘‘I sat down and said, ‘tell me straight up, is this what I have?’,’’ he said.
Macklow suspected he had MND, as he was presenting ‘‘similarly’’ to a family friend who had the condition during the time his symptoms were worsening.
His official diagnosis came in February 2015, three months after the consultation, and soon after he was gifted a buggy controlled by a joystick to get around.
But earlier this year, after losing all remaining mobility in his arms and hands, Macklow was forced to move into a wheelchair, which he operates with a button by his leg.
Despite being confined to the chair most of the time and when he is sleeping, he still gets up for short, assisted walks a few times a day.
‘‘It’s quite a slow process. It feels like the body is dying in my own skin. It’s very debilitating, everything you do makes your body tired.’’
In between his district nurse and support worker visits, Macklow now sits and watches his two sons run the farm from behind a window.
He also likes listening to the radio, watching rugby, and spending time on his computer, which has voice recognition software.
Macklow hoped to participate in a Napier charity walk on November 12, Walk 2 D’Feet, to raise awareness for MND.
He had previously taken part two years ago when it was held in Waipukurau, but he was unsure if he would have enough energy to make the 70-kilometre journey to Napier this year.
Whether or not he made the event, Macklow hoped his story would open people’s eyes to what life was like with the condition.
‘‘It can strike anyone at any time, it doesn’t have a preference. It’s a terribly, terribly frustrating disease.’’
Macklow’s advice to other families affected by MND was to always remain positive.
‘‘If I get down, I pull everyone else down with me. I don’t want to do that. Life’s still got to go on and I don’t want to sit around moping all day.
‘‘But don’t be afraid to cry, because we’ve all done it.’’
There is currently no cure for the condition.
Waipukurau man Peter Macklow says MND is a ‘‘terribly, terribly frustrating disease’’. ‘‘Life's still got to go on and I don't want to sit around moping all day. But don't be afraid to cry, because we've all done it.’’