Meet A Triathlete---With Parkinson's!

           

Carl Ames was told exer­cise could fore­stall PD symp­toms; he went the distance

By Kyle Porter
Carl Ames pulls up on the Seg­way han­dle­bars and the vehi­cle tilts back, then shoots off across the pave­ment – Ames stand­ing astride in his safety hel­met and grin­ning ear to ear.
After demo­ing the quick, adapt­able moves of the Seg­way, he gets off, takes a ten­ta­tive step, then low­ers his eyes to con­cen­trate on the next step. He swings out a lan­yard with his work badge and keys in one hand, and a foot and a leg fol­low. His steps con­tinue until a thresh­old halts his progress, so he leaps a lit­tle and clears the doorway.
The effort Ames puts into a short walk is in sharp con­trast to the ease and speed of the Seg­way. He leans into the lit­tle vehi­cle, and it responds to his light touch. Parkinson’s dis­ease has robbed his body of the abil­ity to respond con­sis­tently to sim­ple com­mands – stand, walk, turn, be still.
He was diag­nosed four years ago when only 46 years old. Besides the tremors most peo­ple asso­ciate with Parkinson’s, Ames expe­ri­ences the loss of move­ment and the loss of con­trol of move­ment that are also symp­toms of PD.
But thanks to the Seg­way pro­vided by the his employer, Knight Trans­porta­tion, he is still able to carry out his duties as oper­a­tions man­ager at its Phoenix headquarters.
More sur­pris­ing by far, how­ever, two years after he was diag­nosed Ames com­pleted his first-ever triathlon. He  recalls that he had no expe­ri­ence as a swim­mer and used a waist-belt flota­tion device in that first triathlon. He also had to develop endurance and his own tech­nique of walk-running to mas­ter the foot race. He bor­rowed a bike for the third leg of the ath­letic event, dis­cov­er­ing that cycling was the eas­i­est part for him.
By March of the next year, he bought a road bike and started cycling seri­ously. Since then, the now 50-year-old grand­fa­ther has com­pleted three sprint triathlons and sev­eral bike tours, includ­ing a 50-mile ride with friends to cel­e­brate his birth­day ear­lier this year.
If the Seg­way allows him free­dom of action now for the imme­di­ate future such ded­i­cated exer­cise may be hold­ing back pro­gres­sion of the dis­ease itself. At least, that is the evi­dence from research car­ried out in recent years.
Dr. Narayanan Krish­na­murthi, assis­tant pro­fes­sor in the Cen­ter for Adap­tive Neural Sys­tems at Ari­zona State Uni­ver­sity and a researcher at Phoenix’s Muham­mad Ali Parkinson’s Cen­ter, high­lighted the nine-month clin­i­cal trial he com­pleted to study the ben­e­fits of exer­cise. PD patients used cross-country ski poles while walk­ing in place for 45 min­utes, three times per week. Though still unpub­lished, Krish­na­murthi says he found def­i­nite ben­e­fits to the effort.
Par­tic­i­pants expe­ri­enced greater range and free­dom of move­ment and felt bet­ter, he says. A follow-up 12 weeks after the trial ended showed the ben­e­fits were sus­tained, and despite some ini­tial com­plaints about how rig­or­ous the exer­cise seemed, many chose to con­tinue, he says.
For Ames, med­ica­tion is cru­cial to main­tain­ing his motor func­tions, and he fol­lows diet rec­om­men­da­tions. In addi­tion, soon after after being diag­nosed early in 2008, he joined a gym and started car­dio­vas­cu­lar and weight training.
His new pas­sion is cel­e­brated with friends and fam­ily – his son Jor­dan fin­ished the last leg of a cycling trip to San Diego when Carl couldn’t ride any fur­ther, and his wife Leisa gath­ered pho­tos of his ath­letic endeav­ors and bound them into a book, “First Cycling Adven­tures –Our Hero!”
The San Diego ride was the cul­mi­na­tion of a cross-country bike ride by fam­ily and sup­port­ers of Parkinson’s patients. The  POPs ride, Pedal Over Parkinson’s, started in St. Augus­tine, Fla., in April 2011 and ended six weeks later in San Diego at the Pacific Ocean. The inau­gural event raised almost $43,000 toward its goal of rais­ing  $1 mil­lion to fund research on Parkinson’s, a dis­ease that so far has resisted efforts to cure it or even diag­nose it early. (See Exer­cise Chal­lenges Parkinson’s.)
By the time it is diag­nosed, the dis­ease usu­ally has destroyed about 70 per­cent of the chem­i­cal neu­ro­trans­mit­ter dopamine, pro­duced deep in the brain, in the sub­stan­tia nigra, accord­ing to Dr. Holly Shill, a neu­rol­o­gist and direc­tor of Parkinson’s research at Ban­ner Sun Health Insti­tute in Phoenix.
Latin for “black sub­stance,” the sub­stan­tia nigra is a mass of neu­rons located in the mid-brain, and the destruc­tion of these cells leads to alter­ations in the activ­ity of the neural cir­cuits within the basal gan­glia that reg­u­late move­ment. The effects of lost dopamine reveal them­selves in many ways.
Bradyki­ne­sia, or slow­ness of move­ment, is com­mon, as is rigid­ity and pos­tural insta­bil­ity. Those affected can be “on” and able to move when their med­ica­tion works, or “off” and nearly immo­bile when it wears off or fails to work. In con­trast, dysk­i­ne­sias are invol­un­tary, writhing, twist­ing or pulling motions that occur as side-effects of the syn­thetic dopamine Parkinson’s patients rely on to move at all.
As for Ames, he says he couldn’t face the chal­lenges of Parkinson’s with­out the sup­port of his wife Leisa and his whole fam­ily. In addi­tion to their son, the Ame­ses, who have lived in Peo­ria for 23 years, have four daugh­ters and two grandchildren.
Friend Ed Smith, who has known Ames for almost 10 years, com­peted with him in that first triathlon after Ames approached him to train together for the event.
“Carl has incred­i­ble deter­mi­na­tion to push him­self even when his symp­toms make it dif­fi­cult for him to walk,” Smith says.
Since his diag­no­sis, he has used acupunc­ture, mas­sage and elec­tronic mus­cle stim­u­la­tion ther­a­pies.  But he feels the biggest ben­e­fits from his reg­u­lar exer­cise and new­found pas­sion for cycling.
“My body is in bet­ter shape now than before I had Parkinson’s,” says Ames, a fit, mus­cu­lar, healthy-looking man who appears younger than his 50 years.
Leisa Ames says she wor­ried that he was phys­i­cally over­do­ing it with the triathlons and bike tour­ing, and says he had some set­backs after stren­u­ous com­pe­ti­tions. But she rec­og­nizes his need to be proac­tive and not give in to Parkinson’s. And Ames’s  enthu­si­asm for cycling keeps him opti­mistic, she says.
“He’s always been a high-achiever,” she says. “Carl doesn’t want to be told he can’t do something.”
Among his many tricks and tech­niques to move when his body doesn’t respond, Ames demon­strated a side­ways shuf­fle that he uses at the start­ing line of a triathlon foot race. After sev­eral slid­ing steps to one side he gains enough momen­tum to pro­pel him­self for­ward and is able to walk-run the course. His friends and fel­low com­peti­tors call him “Bolt” because of his bursts of energy when he’s run­ning or cycling.
Tiled and pat­terned floors help him con­cen­trate on plac­ing his steps for­ward, one by one. The lanyard-swinging trick allows his eyes, then feet to fol­low the for­ward motion.  And he actu­ally likes curbs. He man­ages to walk on the edge and even cross foot over foot, up and down. When his body stops, his face con­veys the will he musters to make his leg take another step.
Neu­rol­o­gist Shill says visual cues such as those Ames uses are help­ful because they engage the brain to coor­di­nate the motor sig­nals dis­rupted by Parkinson’s.
Asked about his feel­ings when he heard the Parkinson’s diag­no­sis, Ames says, “This kind of stinks,” then shrugs his shoul­ders. “Doc­tors told me ‘Parkinson’s is not a death sen­tence, it’s a life sentence.’”
Still, he wishes a data­base of patients’ progress and reac­tions to med­ica­tions could be main­tained by doc­tors or drug com­pa­nies and that they main­tained con­tact with patients. How­ever, he has learned that no one has the fund­ing to tackle such a project. But he’s active in sup­port groups through the Muham­mad Ali Parkinson’s Cen­ter at Phoenix’s Bar­row Neu­ro­log­i­cal Insti­tute, and he serves on a board for its fundrais­ing events.

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