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Carroll County Times
Carroll County

Area family cares for son with support of community

Jake's physical/occupational/vision therapy program BrainNet includes reading.  Here, family friend Sooze Thornton, right, reads to Jake as part of his therapy while his mom, Donna Armacost, left, supports him and his niece, Melaina Grothe, looks on in March 2013._- Original Credit: Submitted photo

On Nov. 21, the Armacost family, of Upperco, will hold a pig roast and silent auction inside Arcadia fire company's activities building. The evening promises music, food and fun, but it isn't just about entertainment. Proceeds from the event will go toward the care of 19-year-old Jake Armacost, who was the victim of a near-drowning in his family pool at just 16 months old.

Damage to Jake's brain left him with occasional seizures and the inability to walk, talk, or take nutrition without a feeding tube. Now, 18 years after the accident, his family utilizes any alternative therapy that will bring Jake relief and comfort.

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Jake's mom, Donna Armacost, is a part-time school nurse at Sandymount Elementary School. She said the family has tried many different forms of therapy. When something works they continue with it, when it doesn't, they chalk it up as a learning experience.

About four years after the accident they tried hyperbaric oxygen therapy. An enclosed chamber allows the inhalation of 100 percent oxygen and is said to enhance the body's natural healing process.

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It seemed to relax him and give him relief.

Not long afterward, they started Feldenkrais therapy and acupuncture.

"We see a lot of relaxing in his muscles with the Feldenkrais," Armacost said.

Feldenkrais therapy utilizes comfortable, easy movements that gradually evolve into body positions with a greater range and complexity.

"He makes little improvements from these therapies, but those little improvements are a big deal to us," Armstrong said. "He also gets a massage weekly with raindrop therapy. They use essential oils massaged into the back. It seems simple but it makes a difference. Those three things keep him relaxed and help him breathe better. He doesn't swallow often enough so we use a suction machine for secretions. Sometimes he stiffens, but that therapy helps him relax so we can bend his arms. It makes him easier to dress and you can tell he feels better."

Armacost said they also use supplements meant to aid in the production of neural cells. The use of vitamins, minerals and antioxidants supplements began after the family took Jake to see Daniel Amen, a California-based doctor who had an office in Virginia four years ago. Armacost said after she saw him on a PBS program, she sought him out.

"He is all about the brain," Armacost said of Amen. "They did a SPECT scan, similar to an MRI only more brain detailed. It shows the brains in colors and shows what parts are getting oxygen and what parts have what they call holes — where there is little or no activity. With the supplements we almost immediately saw that he was more alert. These little things make a big difference in how we think he feels."

But the treatments he receives aren't conventional medicine, making the financial toll on the family difficult to bear.

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"Most of what really works and keeps him comfortable are considered alternative therapies and they are not covered by insurance," said Holly Grothe, one of Jake's four older sisters. "These therapies make his eyes light up. They make a big difference to his muscle tone and alertness. He also goes to a vision doctor who specializes in children like him. When he has his glasses he will track things. You will see him follow a picture."

To help with the costs of the treatments, the family has held the pig roast and silent auction twice a year for the past 12 years.

The next pig roast and auction will be held from 6 to 10 p.m. Nov. 21. The event will feature music and a menu including barbecue pork, fried chicken, macaroni salad, coleslaw, potato salad, chips and nonalcoholic beverages.

Armacost said friends from her church, St. John's (Leister's) Lutheran Church, and people from Sandymount Elementary have volunteered to work in the kitchen at the event. Many volunteers are also bringing desserts, and homemade ice cream donated by Prigel Family Dairy, in Glen Arm, will be available for purchase, she said.

More than 250 items will be available for silent auction at this event, which has been held for 12 years.

"In those 12 years we have never raised the price," Armacost said with pride. "The silent auction items include a lot of gift cards; seasonal stuff like Christmas items; kid's stuff; sports memorabilia from Great Moments [in Westminster], some of it signed; a weekend stay in Ocean City; tools; gift baskets; lots of things for the ladies like all kinds of jewelry. We expect even more donated items to come in."

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Jake's part-time nurse Elisa Corso, who has been working with the family for nearly a decade, said the pig roast and silent auction is an important fundraiser in helping the Armacost's pay for Jake's care.

"This will help them pay for his special therapies, his communication device, his wheelchair and the special equipment he needs," Corso said.

Tickets cost $15 in advance or $20 at the door, with all proceeds going to help the family with the growing costs of keeping Jake comfortable and helping him thrive at the highest possible level.

Maintaining that level of care has been a labor of love for the Armacost family.

Jake's sister, Margie Williamson, said her dad, sisters and extended family help out but her mom spends hours working with Jake. Williamson said she is always glad when she can help her mom out a little.

"Once a week my husband [Justin] and I go over to their house to do BrainNet physical therapy with Jake," Williamson said of the British therapy form her mom uncovered in research. "It helps him with flexibility, core strength, vision and movement."

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The therapy includes a series of exercises including swinging and spinning plus patterning, vision, reading, and moving the body without force. Williamson said Jake is more relaxed after the sessions.

"He's easier to move around and less likely to startle," Williamson said. "Most of the time he startles quickly, if dishes clatter or there is a loud noise."

Corso said Armacost uses several different approaches for Jake's care.

"Donna has a lot of special people who come to her house to do special therapies for him," Corso said. "She has a massage therapist, an acupuncturist and a lady who does an exercise program called Feldenkrais exercise therapy. She takes him to near Lancaster for hyperbaric oxygen therapy. And while she is there they do cranial sacral therapy."

Cranial sacral therapy, a gentle, noninvasive form of bodywork addressing the bones of the head, spinal column and sacrum, can release compression in those areas, alleviating stress and pain.

"Right now, we are working with Jake with a communication device so he can maybe have more communication or more control of his environments," Corso said. "He may not speak but he definitely understands us. He loves music. If you do activities with him that are music related he smiles. He sometimes becomes vocal and make noises. When [the therapist] comes to do the Feldenkrais therapy, you can tell he loves that. He really smiles. He knows when certain people come in and he can hear what is going on. He is just not able to communicate back."

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Corso said Jake can scroll through music selections on his communication device and choose what he likes.

"He usually works with that about an hour a day," Corso said. "If you didn't know Jake and you saw him you would think he couldn't communicate because there is not a lot of movement, but when you interact with him you know that he does understand. He's a great guy, so easy to get along with and the family are all so nice."

When his seizures increase to the point where the family feels there are too many, they take Jake to Kennedy Krieger or John Hopkins Hospital Center for more help.

Through the support of the community, Grothe said, the family has been able to give Jake more opportunities to live a more comfortable life.

"The community support allows Jake to experience the simple pleasures we often take for granted, including vision, car travel, relaxed muscles with full range of motion, healthy skin as well as learning and daily positive progress," Grothe said. "It's so heartwarming that people do come and support us."

Though the journey may be a difficult one, Armacost said, she feels thankful.

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"We love [Jake] to death and there is gratification there," Armacost said. "On one hand, you are dealing with something that others may not deal with — but on the other hand everyone has something they have to deal with. You do the best you can in life and you remain grateful for all the little things."

If you go:

What: Pig roast and silent auction

When: 6 to 10 p.m. Saturday, Nov. 21

Where: Arcadia fire company activities building, 5415 Arcadia Ave., Upperco

Cost: $15 in advance or $20 at the door

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For tickets or more information: Contact Donna Armacost at 410-967-7748 or 410-848-5486


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