Walk for those who can't

Taupo & Turangi Weekender - - Front Page - Lau­rilee McMichael

“I wouldn’t wish it on my worst en­emy,” says Ron Straw­bridge.

The Taupo¯ 69 year old is talk­ing about mo­tor neu­rone dis­ease, the mus­cle-wast­ing dis­ease that robs a per­son of their strength, their en­ergy, their move­ment, their speech and even­tu­ally, their abil­ity to swal­low and breathe. The only things un­af­fected are hear­ing, sight and cog­ni­tive func­tion. The per­son’s mind re­mains alert, trapped in a body it can no longer con­trol.

Ron knows this lies ahead and it’s not a pleas­ant thought. In the seven months since his and wife Yvonne’s lives were tipped up­side down by the di­ag­no­sis, the for­mer me­chanic turned parts man­ager has de­te­ri­o­rated alarm­ingly quickly and his lungs are the worst af­fected. He was in hos­pi­tal a week ago be­cause he had trou­ble breath­ing.

But although he wishes things were dif­fer­ent, Ron knows he is one of the lucky ones. He is en­veloped in love and sup­port, with his daugh­ter and her part­ner liv­ing next door, his grand­daugh­ter and three chil­dren in Taupo¯, sup­port­ive friends, a car­ing wife and all the help he needs, whether med­i­cal or care from the team at Lake Taupo¯ Hos­pice.

He’s lucky to be here at all. Ron was born with a hole in his heart and was one of the first New Zealan­ders op­er­ated on as a child to re­pair it. Doc­tors thought he might not live be­yond his 50s. But he grew up to be­come a fit man with a love of coun­try mu­sic — a long-time drum­mer in the Taupo¯ Coun­try Mu­sic Club’s band — three chil­dren and an ac­tive life, work­ing un­til he was 67.

A few years ago he no­ticed he was los­ing strength and be­com­ing in­creas­ingly tired. Then one day he couldn’t sign his name. He fell over when he was out with a mate. His brain was telling his feet what to do but they weren’t fol­low­ing. His GP sent him to a neu­rol­o­gist at Waikato Hos­pi­tal. Long, un­pleas­ant tests fol­lowed and the di­ag­no­sis left Ron and Yvonne reel­ing. There is no cure for MND and it is not known what causes it.

Ron says the hard­est things are cramps, tired­ness all the time and the loss of his strength.

“You say ‘I’m go­ing to pick that [thing] up’ but you can’t be­cause you’ve got no strength in your hands.

“It doesn’t af­fect the mind, that’s still as good as gold, it’s just the body that goes.”

He’s frus­trated that the re­tire­ment he had looked for­ward to — “to get out and about, do the things that you don’t nor­mally get to do” — has been taken from him. He can no longer help Yvonne around the house and sec­tion, he can’t pick up his 18-month-old great-grand­son any more, and last Christ­mas he had to give up play­ing the drums.

Ron and Yvonne’s grand­daugh­ter Kassy Wi­neera says it’s hard to watch her beloved Poppa go down­hill so fast.

“It’s lit­tle things like when he’s eat­ing, you want to cut the food up for him.”

Ron says while he doesn’t par­tic­u­larly want to be in the news­pa­per talk­ing about MND, he hopes it will raise aware­ness of the dis­ease — some­thing he had never heard of un­til two years ago — and funds for re­search into its cause, and hope­fully a cure.

Be­cause of his lungs, Ron says, “I could turn my toes up to­mor­row”. But his Chris­tian faith helps.

“I’m go­ing home. I’ve ac­cepted that. What else do you do? You have to ac­cept it. I’ve ac­cepted a lot of things in life and it’s been lovely, I can’t com­plain about my life . . . this is not re­ally how I would have liked the end of it but this is how it is.”

■ Show your sup­port for MND re­search by join­ing Taupo¯’s Walk 2 D’Feet MND, a 2.5km walk around Taupo¯’s Boat Har­bour area this Sun­day, Novem­ber 11. Reg­is­tra­tion opens at 9.30am at the Taupo¯’s Yacht Club in Ferry Rd. Reg­is­ter at mnd­walk.org.nz or on the day for $15 per per­son/$30 fam­i­lies. If you can’t make it to the walk, you can sup­port Ron’s fundrais­ing ef­fort at walk2d­feetmnd2018.ev­ery­day­hero.com/nz/RONS. Half of the funds raised go to­wards pro­vid­ing sup­port for peo­ple with MND and their car­ers. The other half goes to sup­port­ing MND re­search in New Zealand.

Photo / Lau­rilee McMichael

Ron Straw­bridge, pic­tured with wife Yvonne, wanted to spend his re­tire­ment trav­el­ling and re­lax­ing. In­stead, he was given the news that his life will be cut short by mo­tor neu­rone dis­ease.

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