Poker rally brings aware­ness to Trigem­i­nal Neu­ral­gia

Prairie Post (West Edition) - - Bargaineer - BY DALE WOODARD

Some lo­cal residents are hop­ing to one day hold a win­ning hand against a so-far in­cur­able dis­ease.

Rec­og­niz­ing In­ter­na­tional Trigem­i­nal Neu­ral­gia Aware­ness Day, which oc­curred Oct. 7, Jackie An­der­son-Lea, her daugh­ter Macken­zie Lea and some car pool­ers got an early start in the on­go­ing quest to build aware­ness for the neu­ro­log­i­cal dis­ease.

And not even the COVID-19 pan­demic was go­ing to stop them as this year’s ini­tia­tive got be­hind the wheel via a poker rally which started at the Elks Pic­nic Com­pound at In­dian Bat­tle Park Oct. 4.

Mem­bers of Team Ken­zie — named af­ter Macken­zie, who has the dis­ease — drove to var­i­ous stops around the city, ed­u­cat­ing them­selves on Trigem­i­nal Neu­ral­gia and go­ing for the jack­pot in the process during Paint The Town Teal Trigem­i­nal Neu­ral­gia Aware­ness Day, teal be­ing the in­ter­na­tional aware­ness colour.

“We re­ally had to get cre­ative and think out­side the box,” said An­der­son-Lea. “So we had a poker run. There are five stops through­out the city and each stop has a Trigem­i­nal Neu­ral­gia aware­ness sign and a trivia ques­tion. So you have to learn some­thing about Trigem­i­nal Neu­ral­gia be­fore you get your poker card. So it is a lit­tle bit of a trade-off. You hand in your cards and we have en­cour­aged peo­ple to so­cially dis­tance and en­joy the river bot­tom on this beau­ti­ful day while we count the cards and then we have prizes for best poker hand, best dec­o­rated groups and the kid that brings in the most.”

Hav­ing watched her daugh­ter bat­tle Trigem­i­nal Neu­ral­gia for seven years, An­der­son-Lea took ac­tion last year with the first lo­cal aware­ness ini­tia­tive.

“Trigem­i­nal neu­ral­gia is a very rare dis­or­der,” said An­der­son-Lea. “It typ­i­cally im­pacts a se­nior pop­u­la­tion, but my daugh­ter was di­ag­nosed at the age of 15, so that makes it even more rare. Our trigem­i­nal nerve is the fifth cra­nial nerve that comes out of our brain stem and it ba­si­cally con­trols the func­tion­ing of our face.”

An­der­son-Lea said there are two types of Trigem­i­nal Neu­ral­gia, typ­i­cal and atyp­i­cal.

Typ­i­cal Trigem­i­nal Neu­ral­gia is sharp, shoot­ing, elec­tri­cal pain, while atyp­i­cal is more of a long-term, throb­bing type of pain.

“It’s known as the worst pain in med­i­cal his­tory and cur­rent medicine,” said An­der­son-Lea. “So it is a nasty dis­ease. There is also no cure and it is pro­gres­sive. There are med­i­ca­tions that can pro­vide some re­lief, but those pro­vide side ef­fects that are al­most as bad. There are a num­ber of dif­fer­ent sur­gi­cal op­tions that can pro­vide tem­po­rary re­lief, but there’s not a cure.”

The nick­name for Trigem­i­nal Neu­ral­gia is the Sui­cide Dis­ease, said An­der­son-Lea.

“Be­cause so many pa­tients that have it, there is no hope and there is no cure and the pain is so in­tense that’s the only op­tion that they see. So rais­ing aware­ness is so im­por­tant and as a fam­ily and as a com­mu­nity we have re­ally come to­gether. We call our­selves Team Ken­zie and we are the group that has wrapped our­selves around her and have re­ally taken the re­spon­si­bil­ity to raise aware­ness. She’s young and we have hope that we are go­ing to find a cure.”

Macken­zie has had two neu­ro­surg­eries, said An­der­son-Lea.

“But she is cer­tainly not at any level of re­mis­sion or cured. She is on full dis­abil­ity and was very driven. She wanted to go to med­i­cal school and had a whole bunch of goals. She was a dancer and a straight-A stu­dent and her life came to a screech­ing halt.”

On Wed­nes­day, the ac­tual Trigem­i­nal Neu­ral­gia Aware­ness Day, Team Ken­zie had a lantern walk go­ing from the Civic Cen­tre Track in Leth­bridge and will end at city hall, which will be lit up with the colour teal.

The in­au­gu­ral lo­cal Trigem­i­nal Neu­ral­gia Aware­ness Day last year drew 250 peo­ple

with a bar­be­cue and gath­er­ing at Ni­cholas Sheran Park. An­der­son-Lea said she plans to change up the event ev­ery year go­ing for­ward.

Though Trigem­i­nal Neu­ral­gia re­search is on­go­ing, An­der­son-Lea it’s hard to say if a cure will be found.

“So we want to raise that aware­ness and get it out there,” she said. “Trigem­i­nal Neu­ral­gia runs hand-in-hand with mul­ti­ple sclero­sis and some other neuro-type dis­or­ders. As re­search grows there we are hop­ing we can pig­gy­back on that. My daugh­ter is only 22, so we have hope that there is time. It is tough, but we are do­ing what we can.”

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