Twitches first sign of bat­tle with dis­ease

The Hastings Mail - - FRONT PAGE - AN­DRE CHUMKO

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.

AN­DRE CHUMKO

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.’’

Peter Mack­low

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