On the road to re­cov­ery

Bay Roberts na­tive shares his strug­gles with vas­culi­tis

The Compass - - HEALTH - BY NI­CHOLAS MERCER TC ME­DIA nmercer@cb­n­com­pass.ca

The Shore­line Her­itage Walk in Bay Roberts rep­re­sents more than just a hike for Dwight Sparkes.

To the Bay Roberts na­tive, it’s a foun­da­tion in his re­cov­ery. Ev­ery step was like lay­ing an­other brick to his re­cov­ery.

“I see it as build­ing a foun­da­tion of get­ting back what I have lost,” said Sparkes. “It’s just an­other piece in the puz­zle of putting it all back to bet­ter again.”

In 2014, Sparkes was di­ag­nosed with Gran­u­lo­mato­sis with polyangi­itis (GPA), pre­vi­ously known as We­gener›s gran­u­lo­mato­sis (WG). It’s a form of Vas­culi­tis that in­flames blood cells, ar­ter­ies, veins or cap­il­lar­ies.

As re­sult, the tis­sues and or­gans supplied by the af­fected blood cells do not get enough blood. This can lead to or­gan and tis­sue dam­age, as well as the pos­si­bil­ity of death.

It weak­ened the 46-year-old to the point where get­ting off the couch was be­com­ing a strug­gle. It’s why the 1.2 kilo­me­tre trail in the east end of Bay Roberts was so im­por­tant.

For Sparkes, ev­ery step was one closer to achiev­ing a sliver of nor­malcy. Be­fore get­ting sick, the for­mer Royal New­found­land Reg­i­ment re­servist could com­plete the hike in just over an hour.

His first crack at the hill after his di­ag­no­sis with vas­culi­tis ended after 10 min­utes. Out of breath by the time he reached the bot­tom of the path to No De­nial Path, Sparkes turned back. It was an­other step for­ward. Even­tu­ally, as Sparkes got stronger, he kept pro­gress­ing and a year later he did the com­plete cir­cuit.

“It’s like when you climb moun­tains,” he said. “When you climb one, you don’t stop. You keep look­ing for an­other moun­tain to climb.”

He’s found strength in a Face­book group for peo­ple around the world af­fected by vas­culi­tis. It’s ther­a­peu­tic for him. “When I win, I share it with them and when I lose I share it with them,” said Sparkes. “There’s al­ways some­one to bounce it off of.”

When it all changed

Head­ing into April 2014, Sparkes had an ear in­fec­tion he couldn’t shake. He’d made a cou­ple of vis­its to his fam­ily doc­tor, but it didn’t go away.

“That was the dis­ease then. It was at­tack­ing my eardrum,” said Sparkes. “Even­tu­ally, what hap­pens you start hav­ing symp­toms sim­i­lar to a re­ally bad flu.

“It wasn’t un­til my (doc­tor) had a hunch that we knew it was vas­culi­tis.”

It baf­fled doc­tors at the Health Science Cen­tre in St. John’s. Dur­ing that time, he lost the sight in his left eye and devel­oped gran­u­lo­mas on his lungs. While his kid­neys weren’t orig­i­nally af­fected, their func­tion had since dropped to 40 per cent as the dis­ease pro­gressed.

“In June and July, I was de­pressed. I was in a very black place,” Sparkes said of the af­fect the dis­ease had on him. “I used to play video games, read and ex­er­cise. It takes a toll on your men­tal well-be­ing. You’re just not in a good place.

“My mind­set. I was sick and get­ting used to the fact that I wouldn’t see again or do the things that I wanted to do. It was that and the dis­ease and the chemo all start­ing to press in.”

How he was af­fected

In the months that fol­lowed his hospi­tal stay, cop­ing with the dis­eases put a lot of strain on re­la­tion­ships with his wife and his fam­ily.

There were times, although spar­ingly, when frus­tra­tions with the way his drug cock­tail was af­fect­ing his body led to loud, vo­cal out­bursts. The same hap­pened when peo­ple were slow to ad­just to the changes in his rou­tine. Sparkes likened it to steroid rage. “Nor­mally, I’m a very pas­sive per­son,” he said. “Lucky enough, the peo­ple around me are very un­der­stand­ing.”

He cut salt and sugar out of his diet and al­tered what he eats dras­ti­cally. A man who loved choco­late, pizza and Chi­nese food sud­denly stopped eat­ing those things.

Sparkes stopped drink­ing and his so­cial life plum­meted. It was eas­ier not to put him­self in sit­u­a­tions where he could be tempted or where he could get sick. With his se­verely weak­ened im­mune sys­tem, con­tract­ing a bug or an in­fec­tion could be deadly.

“You have your life one mo­ment and it com­pletely flips,” said Sparkes. “It’s some­thing I hope no one else that I know goes through it.

“I just stayed in the house like house ar­rest. Then I started walk­ing.”

Get­ting off the couch

Sparkes can pin­point the ex­act mo­ment when he found the iron grip of the dis­ease loos­en­ing just a lit­tle. It was late in July 2014. “I got up one morn­ing and it’s kind of like it flipped,” said Sparkes. “Some­thing had changed. I just felt bet­ter.

“I think it was from that day that I started get­ting out­side.”

Get­ting out­side meant walk­ing. First he went as far as the mail boxes on his street in St. John’s.

Then, go­ing a bit fur­ther than that un­til he was walk­ing like he had be­fore.

Los­ing one­self in hob­bies or ac­tiv­i­ties is one way Sparkes man­ages his well-be­ing. He’s a de­voted viewer of HBO’s Game of Thrones, as well as a slew of other shows.

How­ever, aikido is what re­ally cen­tres him and al­lows him to es­cape for a cou­ple of hours.

Sparkes ap­proached the re­turn to the mar­tial art of Aikido was the same as walk­ing — do­ing a lit­tle bit at a time.

Now, he hopes to pick up his black belt in the near fu­ture.

His hear­ing re­turned and the gran­u­lo­mas cleared from his lungs.

Vas­culi­tis Aware­ness Month was in May. One of the ob­jec­tives is to ad­vance pub­lic aware­ness of this rare dis­ease, as well as the progress in treat­ments and ad­vances in re­search.

Sparkes hopes his story will help some­one strug­gling with some of the same symp­toms. He draws in­spi­ra­tion from Bran­don Hud­gins, an Amer­i­can mid­dle-dis­tance run­ner who has three episodes of WG.

“(Bran­don’s) non-sweat goals are al­ways to in­crease the aware­ness of what we have,” said Sparkes. “I thought it’d be a good idea … to spread the gen­eral aware­ness of the dis­ease. If some­one has it, for them to know they’re not alone. There are other peo­ple in the prov­ince with it.”

SUB­MIT­TED PHOTO

Bay Roberts na­tive Dwight Sparkes (left) is shown here dur­ing a re­cent belt test at his Aikido club in St. John’s. Sparkes was di­ag­nosed with a form of vas­culi­tis in the spring of 2014.

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