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Scottsdale horse program helps patients with ALS
Fitness studio aids Down syndrome youths
BY ALEX GALLAGHER Progress Staff Writer
For patients who suffer from amyotrophic lateral sclerosis – also referred to as Lou Gehrig’s disease or ALS –a sense of normalcy is elusive.
However, Hunkapi Programs is doing its best to restore the feeling with its new equine therapy program devoted to patients with ALS. “This is the first ever three-year research program that has been supported by the Gila River Indian Community,” said Hunkapi Programs Executive Director Terra Schaad.
“It’s really exciting with our program because we also got to partner with the Mayo Clinic and its ALS research department to research the overall well-being of patients with ALS through therapeutic riding.”
“The ALS lead researcher at Mayo Clinic came to us six years ago and he felt that horses could help improve the overall sense of well-being for his patients,” Schaad recalled.
She loved the idea and began to look for funding but it was not until last year that the money came through.
“We’ve had somewhat of a long-term relationship with Gila River but it wasn’t until last year where we felt it was the time to request the funding for this program from them,” she said, referring to the Gila River Indian Community.
The ALS Association Arizona Chapter also wanted to help the program.
“We got involved about four years ago because one of our staff members is a recreational therapist and she wanted to do adaptive events for our families,” said Amber Montanez, care program services manager with the ALS Association Arizona chapter.
“She loved horses herself and so we reached out to Hunkapi Programs to see if this would even be possible,” Montanez explained. “Once they said it was possible, we knew we wanted to come back over and over.” The next step was to figure out how to make horse riding accessible to people whose balance, muscles and ability to move have been so significantly impacted by the disease.
“We have to take their level of mobility into consideration somewhat, although
Doug Clough rides Hope the draft horse around the arena with spotters, from left, Tina Kovalik, Carolyn Goldfarb and Ted Miller during an equine therapy riding session for people with Amyotrophic Lateral Sclerosis (ALS), Saturday, March 5, 2022, in
Scottsdale, Arizona. (David Minton/Staff Photographer)
seeHUNKAPI page 24
BY ALEX GALLAGHER Progress Staff Writer
Staying fit can be hard – especially if someone looks and functions differently from every other person in a typical gym.
Because of this, GiGi’s Playhouse, an achievement center for individuals with Down syndrome, saw the need for a space where clients could comfortably work out.
With that came the GiGiFIT program, which quickly became a hit and something that provided greater aid than GiGi’s Playhouse realized.
“100% of people who have Down syndrome will have Alzheimer’s disease,” said GiGi’s Playhouse Phoenix’s Executive Director Robin Lea-Amos. “There’s been a lot of cross research about a person with early onset Alzheimer’s disease getting exercise and how that helps them, so it only makes sense.”
Not only does exercise help deter the onset of Alzheimer’s, but it also helps participants increase their cognitive abilities.
“We have done a lot of research on the correlation between cognitive abil-
ity and exercise,” Lea-Amos said. “The increase in cognitive abilities directly increases with exercise.”
Additionally, children born with Down syndrome often have low muscle tone due to a condition known as hypotonia.
“This is one of the reasons that children in Arizona get physical therapy almost from the moment they are born,” Lea-Amos said.
GiGiFIT’s program blends weight training, floor exercises, going for walks and a little yoga.
It became a hit with the kids who rely on the free programs that GiGi’s Playhouse provides.
GiGi’s Playhouse began using its main facility to implement its GiGiFIT program when the pandemic struck. “That area had 15 kids in a class where it was hard for them to be socially distanced and we had a lot of people on a waiting list to be a part of the GiGiFIT program,” Lea-Amos said.
Once Lea-Amos realized the kids were going to need more room, she began writing grants and looking to partners to acquire sufficient funds to purchase a vacant facility next door.
“Part of my job as an executive director is development and raising funds,” Lea-Amos said. “I knew of organizations and we went out and said this was the need, this is what our population needs and here’s how it will benefit the greater Scottsdale area as well as the valley.”
The Scottsdale Charros, Arizona Sports and Tourism Authority and Legacy Foundation all pitched in with grant money to make this happen and the doors of the GiGiFIT Studio opened in February.
Now that the facility has offered a month’s worth of sessions, children, teens and adults have attended inperson and virtually and have learned new skills and received nutritional advice from volunteers who guide the program. “What we do with this is we teach life altering skills for our kids,” Lea-Amos said. “The joy of fitness, social skills, nutrition and drinking water filters over to the entire family which filters over into better health.” Whether the kids attend the fitness programs in person or virtually, this program has created a community where the kids feel comfortable exercising among their peers.
“Just like the traditional gym with people who have no neurological diversity, there is a competitive factor and a peer engagement that is critical,” Lea-Amos said. “These kids are socially motivated and working out with their friends will allow them to do far more than they would at home or with their
Instructor Sandra Row helps Paola Mellado Perez as Colie Engler and Lexi Robertson are guided by Sam Hohs at GiGi’s Playhouse. (David Minton/Progress Staff Photographer)
seeGIGI'S page 24
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we do have some ALS patients who are completely paralyzed,” Schaad said. “The riders also have to have transportation here, have to feel well enough that they are comfortable going outdoors and their lifespan has to be long enough that they can endure an eight-week program.”
There were also considerations that had to be made for the horses.
“The horses need a lot more support, so each rider will have at-least three people around them as they ride along with special saddles equipped with seatbelts,” Schaad said. “We also use gait belts, adaptive reigns and have a wheelchair ramp – which was all funded through Arizona Sports and Tourism Authority.”
Hunkapi Programs worked with the Mayo Clinic on creating a questionnaire to make sure that the individuals had the right size of horse for the right individual along with the right adaptations.
“Being able to assess appropriateness for our horses and riders is really important and it takes time to develop that skill but we want our riders to feel as safe as they possibly can,” Schaad said.
Volunteers also needed to be trained.
“We had intensive volunteer training,” Schaad said. “All of our volunteers are level-two trained through Hunkapi Programs to be a part of this and then they took additional training on their own emotional regulation as well as the support of the animals that it takes to maintain the stability it takes when you’re mounting somebody that has no mobility or muscular strength.”
With funding secured, volunteers trained and equipment in place, Schaad saw the first cohort of riders saddle up to feel a sense of independence on March 5.
“The mobility, the senses of independence, freedom, joy, camaraderie and being able to get out of their homes to do something provides us with a sense of pure joy when the patients mount the horse and their bodies help move the horse,” Schaad said.
However, not everyone in the program is required to put their feet in the stirrups.
“Even for some of our families who may not be comfortable mounting a horse, they can still get interaction with the horse by grooming or feeding them,” Montanez said.
For those who do choose to ride, Hunkapi Programs and the Mayo Clinic will gather research on their experience in hopes to prove the mental and physical benefits of equine therapy on ALS patients. “It’s definitely physical and mental,” Montanez said. “Part of this session and the grant that Hunkapi Programs received from the Gila River Indian Community is to study what the benefit is overall with these families and to have the research to back it up.
“We’re hoping that this reiterates what we already know in that this is a beneficial therapy that can impact families in such a positive aspect.”
Information: hunkapi.org
GIGI'S from page 23
parents.”
GiGi’s Playhouse operators have plans to enhance the facility.
“We’re working to get more equipment,” said Lea-Amos. “We would like to get some TRX bands, a swing for therapies that help kids with sensory issues and we want to increase the use of the space by making a sensory area for kids with autism spectrum disorder.”
This is because there is research that supports the fact that individuals with Down syndrome are twice as likely to fall under the umbrella of autism spectrum disorder. “Kids with Down syndrome are twice as likely to also be diagnosed as falling under the umbrella of autism spectrum disorder,” Lea-Amos said. “We’re trying to meet the needs of that population and provide them a unique space that they’ll really be able to use.”
In addition to enhancing the studio, Lea-Amos hopes this program aids individuals with finding a job as well as how the world perceives individuals with Down syndrome.
“Our bigger goal is to change the way that the world sees Down syndrome,” she said. “We would love for our kids to have an opportunity in the workplace. I’ll go knocking on gym doors or do whatever I have to get these kids in.”
