Walk 2 D’Feet MND event on Sun­day

Napier Courier - - News - BY BRENDA VOWDEN brenda.vowden@nzme.co.nz

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


Dave Waugh, Taradale, has Mo­tor Neu­rone Dis­ease.

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