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Monday, March 25 , 2019, 3:25 am | Fair 48º


Families with ALS Learn to Adapt to Changing Condition

MDA provides support groups and communication equipment to help patients and their caregivers with medical and social outreach

[Noozhawk’s note: Second in a two-part series. Click here to read the first story, about Hal and Fran Finney.]

An ALS diagnosis is life-changing, and the services of the Muscular Dystrophy Association help patients and their families with medical and social outreach. 

Santa Barbara-area families are matched up with the ALS Clinic at the UCLA Medical Center, one of 35 MDA ALS-specific clinics in the country, said Emma Karavardanyan, MDA’s health care services coordinator for the Santa Barbara and Los Angeles areas.

MDA also sponsors local support group meetings, which “allow for ALS families that are in different stages of ALS to network and connect with each other — to learn from each other, basically, and become a support system for each other,” she said.

Amyotrophic lateral sclerosis, or Lou Gehrig’s disease, affects motor neurons in the brain and spinal cord, and can eventually lead to paralysis, according to the ALS Association.

The monthly Wednesday meetings at Goleta Valley Cottage Hospital are well-attended by a group of PALS (people with ALS) and their caregivers, who are usually family members.

Hal and Fran Finney joined last year after Hal’s August diagnosis. Fran is the MDA-hired group facilitator and leads the conversation around the circle so everyone can update the group on their daily lives and new challenges. Caregivers and family members often come even if the person with ALS can’t, as it helps to ask questions and talk to people who understand what you’re going through, Fran said.

ALS affects each person differently, with the speed of progression as well as the weaknesses and strengths. Since it affects one’s voluntary muscle movements, there are some PALS who can walk after years with the disease, and some who lose that ability within a few months.

Federico, a strong-looking man sporting a black cowboy hat and boots, can still walk on his own after five years with the disease. His misleading appearance is difficult to deal with, as people try to hand him gallons of milk to carry at the grocery store, bump into him while walking or ask him to take a picture, he said.

With no treatment or cure for ALS, the priority is to manage and keep ahead of the symptoms.

That’s the one common thread holding all of their stories and challenges together — you never know what’s going to happen next, but you have to prepare for it anyway.

“I’m afraid that I won’t catch things on time,” Fran said.

Four members of the group have died since the Finneys joined last year.

She said she used to think she was a fearmonger, but that she embraces her ability to spot changes in Hal’s condition. Recently, Hal started a clinical trial that administers ceftriaxone, an antibiotic, to see whether it can slow the progression of ALS.

Group members are all dealing with ever-changing conditions, but they make efforts to go about and do activities they enjoy, from grocery shopping to taking a cruise.

“We don’t just sit around and cry,” Hal said.

As talking becomes more difficult, many people with ALS resort to using online communication, such as forums, e-mailing and Facebook.

Hank Wiley wears a touch-screen voice simulator around his neck to communicate, and has programmed an autobiographical explanation of his condition to play to unaware strangers, as well as a few more amusing responses, such as “get a life.”

Hal uses his ever-present iPad for a similar function when he needs to say something quickly or loudly, like, “Fran, don’t drive so fast.”

MDA’s “loan closet program” rents out valuable equipment such as scooters and voice simulators for as long as people need them. It can be difficult to buy expensive equipment out of pocket or to get insurance to pay for them in a timely fashion.

Hal’s insurance won’t OK a motorized wheelchair, for example, as long as he can take at least a single step, and Wiley’s voice simulator is a loaner as well.

The free services provided by MDA are possible because of vigorous fundraising efforts, and it is the sponsored nonprofit for this year’s Santa Barbara International Marathon, set for Nov. 6. Its marathon fundraiser garnered thousands of dollars for ALS research last year, and a group of PALS and supporters walked the last two miles of the race together.

The course runs from Dos Pueblos High School to SBCC’s La Playa Stadium, and the Finneys plan to once again cross the finish line, though Hal will be in his wheelchair this year.

Click here to donate to MDA through the Santa Barbara International Marathon.

Noozhawk staff writer Giana Magnoli can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk or @NoozhawkNews.

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