‘Now is the time’

Cen­tre­ville na­tive go­ing the dis­tance for Cys­tic Fi­bro­sis Canada

Annapolis Valley Register - - COMMUNITY - Liv­ing By Ash­ley thomp­son Kingscountynews.ca cen­tre­ville ath­omp­son@kingscountynews.ca

When Jim Best de­cided to give back to Cys­tic Fi­bro­sis Canada, he opted to go big.

Best, orig­i­nally from Cen­tre­ville, plans to hit the road on his mo­tor­cy­cle June 25 to em­bark on a cross-canada jour­ney from Nova Sco­tia to Bri­tish Columbia that, he sus­pects, will last about three weeks.

His goal is to raise at least $10,000 for Cys­tic Fi­bro­sis Canada, a non-profit or­ga­ni­za­tion that is near and dear to his heart for many rea­sons. Both Best and his lit­tle sis­ter live with cys­tic fi­bro­sis, a ge­netic dis­ease im­pact­ing more than 4,100 Cana­di­ans.

“I’ve had a lot of friends who have passed away; ac­tu­ally, two of my close friends when I was go­ing through the IWK when I was grow­ing up have since passed away,” the Sackville res­i­dent said in a re­cent phone in­ter­view.

“It’s re­ward­ing to ride for them… that’s why I find the mo­ti­va­tion to do it.”

Best col­lected more than $10,000 in do­na­tions for Cys­tic Fi­bro­sis Canada on his first char­i­ta­ble mo­tor­cy­cle tour that spanned Bos­ton to San Fran­cisco in 2014. In 2015, he raised an ad­di­tional $2,000 for the or­ga­ni­za­tion by rid­ing along the coast of Ire­land.

“Ire­land has the high­est per capita rate of cys­tic fi­bro­sis in the world,” the 34-year-old said, adding meet­ing peo­ple im­pacted by the dis­ease and hear­ing that his jour­ney gives them hope is al­ways a high­light of his tours.

“I en­joy telling them about CF and how it’s changed. When I was born I wasn’t ex­pected to be get­ting out of ado­les­cence.”

Odds are im­prov­ing

He’s happy to re­port the me­dian life ex­pectancy for CF pa­tients is now 50.9 years, in large part thanks to the re­search and de­vel­op­ment work sup­ported by or­ga­ni­za­tions like CF Canada.

“It’s a dis­ease that’s changed quite sig­nif­i­cantly over the past 20 years and I think that’s at­trib­uted to the fact that we have such great health care and ac­cess to the med­i­ca­tions that we’ve had through­out the years.”

But there’s still work to be done.

Best, a phar­ma­cist who has worked in Wolfville, Can­ning, Ber­wick, Mid­dle­ton and Kingston, stresses the im­por­tance of mak­ing med­i­ca­tion ac­ces­si­ble to all CF pa­tients dur­ing his fundrais­ing tours.

“There’s a lot of new med­i­ca­tions coming out to the field for peo­ple with CF to use; the prob­lem is, some­times they have as­tro­nom­i­cal price tags,” he said.

“We have to put them in the hands of peo­ple with CF to make sure they work.”

The cross-canada fundrais­ing tour has been on Best’s mind for five years. In the weeks lead­ing up to the jour­ney, he’ll fo­cus on main­tain­ing his base­line lung func­tion and build­ing up­per body strength for the long ride.

“I wear a mask un­der hel­met and I have to pull over quite a bit and make sure I keep up with my ther­apy,” he said, adding that he’s learned to re­spect his lim­its while liv­ing with CF.

“When I did my US trip, I lost about 20 pounds. It’s some­thing that def­i­nitely takes a lot out of me to do it.”

Liv­ing in the present

Best was too ill to drive his mo­tor­cy­cle across the coun­try in 2016. A com­mon cold, some­thing that might take an av­er­age per­son five to 10 days to re­cover from, can ren­der him out of com­mis­sion for five to 10 weeks.

“You don’t have a choice to take a day off… when you’re at your base­line, you have to work very hard to stay there,” he said, not­ing that he’s ex­pe­ri­enced a sig­nif­i­cant de­cline in lung func­tion in the past five years.

“Ev­ery year, it kind of chips away at you.”

It’s get­ting to the point that, more and more, Best must con­sciously de­cide how to ex­pend his energy. On days he works, he mainly de­votes his time to the phar­macy and his ther­apy. There’s of­ten no energy left for friends or ex­tracur­ric­u­lar ac­tiv­i­ties.

“There’s a lot of days I can’t do any more,” he said.

He’s op­ti­mistic, how­ever, that con­tin­ued ef­forts to com­bat the de­gen­er­a­tive dis­ease will even­tu­ally lead to a cure. And he’ll con­tinue to do his part as long as he’s able.

“In five years from now, I prob­a­bly wouldn’t even be able to con­sider any kind of trips like this be­cause I know my lung func­tion will be low and I won’t be able to en­dure a trip like that,” said Best, not­ing that he’s able to pro­vide of­fi­cial tax re­ceipts for do­na­tions.

“Now is the time that I re­ally have to do it, and I’m ex­cited that it’s all coming to­gether.”

Sub­mit­ted

Jim Best, a phar­ma­cist hail­ing from Kings County, plans to drive his mo­tor­cy­cle across Canada this summer to col­lect do­na­tions for Cys­tic Fi­bro­sis Canada, ad­vo­cate for ac­ces­si­ble med­i­ca­tion and raise aware­ness of the ge­netic dis­ease im­pact­ing more than 4,100 Cana­di­ans. Best, left, is in this photo with his fa­ther, Hal Best.

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