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Adaptive tech connects paralyzed woman to the world: VIDEO























With the flick of her tongue, Carol Spoden can connect with the world.

The Richmond resident is paralyzed from the neck down, a condition that developed from multiple sclerosis.

She can move only her head, her tongue, her eyelids.

But using those assets, she can call her husband Virgil, summon her daughter and caregiver Jill, open the home's door, dim the lights and select that favorite Western available for streaming on Netflix.

How?

Her pal Richard Dreyfuss. Actually, his name is Tom Ardolf, president of Cybermation in Waite Park. (Carol thinks he bears a striking resemblance to the actor.)

His company designed and installed a system that lets Carol control her surroundings through a tablet, controlled with a mouse designed to be moved by her tongue. The mouse is also 3D-printed.

Any drawbacks?

"No, (my mouth) just gets dry," Carol said.

They came up with a solution for that too. Next to the mouse is the end of a hands-free hydration system.

The equipment was made in collaboration with United Cerebral Palsy of Central Minnesota, an organization that hopes to increase accessibility for all people with disabilities, said Jenna Berger, president and CEO.

Assistive technology is any item that can increase access or functionality for people with disabilities. It can be as simple as a propping up a tablet on a lap pillow to highly specialized equipment and computer systems.

Currently, an estimated 15.6 million people in the U.S. either use some type of specialized assistive technology or have reported they would benefit if they did use assistive technology, according to the Association of Assistive Technology Act Programs.

Cybermation first started in 2009 working with digital health care technologies, including assistive technologies and, since 2012, it has become 100 percent of its business.

The setup at the Spoden home helps Carol's caregivers. They don't have to run to the bed every time Carol wants a drink of water. Of course, that benefits Carol's health too. She stays better hydrated.

The system is relatively easy to set up. It's the same system Ardolf has in his home, and anyone could have it installed to automate anything using electricity: locks, lights, entertainment systems and more.

The only difference for Carol is the user interface. In cases like this, Ardolf will assess what a person's strength is. If they can use only a finger, Cybermation will design a device to take advantage of that. In Carol's case, she could move her neck and her tongue.

It's a tactile way to connect to a computer.

This all started because Carol didn't want to miss the beginning of her TV shows. She wanted to be able to change the channel on the hour and adjust the volume as needed.

Ardolf was called. He asked to assess the client. Yes, he could easily give those options to her, but he could also do so much more.

The tablet connects to the TV, the DVD player, the cable box as well as the Internet.

It is all managed from a little black box.

"She now controls her own environment," he said. "If you walk up to the door, she'll open the door for you or close it and unlock it."

Other features could be added, such as climate control.

"It's actually the same automation system I have in my home," Ardolf said. "If you plug it in, I can control it."

It also works off mobile devices, so it can work remotely.

"Once we put a computer in front of her, now she has the power of the Internet," Ardolf said. "It just opens up a world that she never had before and it was all because she wanted to turn up the TV."

So they automated what they could to make Carol more comfortable and independent.

"I'm more independent. It kind of lets me do what I want to do when I want to. It gives me choices," Carol said. She can call or text from the tablet, too.

"That was the empowerment that Carol just wanted, was the ability to turn up the TV volume," Ardolf said. "So I tell people, you think you want more, how about the person who just wants to turn the TV volume up?"

Parts of it uses Dragon speech-to-text software.

Getting the assistive technology to Carol was a collaborative effort.

Stearns County purchased the system from Cybermation, which designed and installed the system along with UCP staff.

Carol qualified for home services through a Community Access for Disability Inclusion waiver. In fiscal year 2015, an average of 18,200 Minnesotans were served with similar waivers each month at an
average monthly cost of about $3,000 in state and federal funds.

The waivers give states a way to obtain federal Medicaid matching funds to provide long-term services and support people in their homes and communities. Stearns County administers the waivers for the state for county residents.

Cybermation contracted with UCP staff for some hardware installation and some of the training Carol received.

Theisen Design & Manufacturing of Waite Park was contracted to build some of the custom mounting hardware, which can attach to her bed and wheelchair. The off-the-shelf equipment didn't position the devices in a way Carol could easily access them.

"It's a pretty comprehensive system that didn't cost the county a whole lot," Ardolf said.

Fifteen years ago, the system would have cost "tens of thousands of dollars" more than it did in 2015. With prices dropping and more than 35 years of experience, Ardolf said he's able to build cost-effective systems — ones that have earned him industry honors multiple times.

"We can put together some pretty unique things," he said.

And that's a bright spot in an otherwise difficult family story. Carol was diagnosed with multiple sclerosis in the late 1990s. Jill lost her hearing gradually and is now completely deaf. One of Carol and Virgil's sons dealt with cancer.

"They always say someone up there is testing you, and I say, I'd sure like to know why,' " Virgil said.

Carol first felt it in her left arm, what she thought was carpel tunnel. But then it progressed and nothing helped. From there, she just started getting tired.

"It got to the point it used to be that there's a lot of stuff that had to get done, and I'd get in there and get it done," Carol said, but then she took a while to recover.

She was diagnosed with multiple sclerosis in the fall of 1997.

"It's kind of nice just to get it named," Carol said.

The MS affected her spine near her neck, which is why she is paralyzed.

"Hopefully, it won't get any worse," Virgil said. The last neurologist said it wouldn't, he said.

And her mind is still there. Before she had the computer, she would count the number of letters in states, and alphabetize the names of her cousins, aunts and uncles.

"That's what I used to do before I got the computer, is memorizing stuff."

The equipment also addresses a safety issue. Previously, Carol had a button under her chin that she pressed if she needed assistance. She would just have to hope it stayed in position as she slept. If it fell, there was nothing she could do until someone checked on her, except holler.

Jill's hearing loss added an extra challenge. So Ardolf rigged a chair to vibrate to alert Jill if she was needed. Carol can also flash the lights in the kitchen if Jill happens to be in there.

Carol has had the devices for several months now.

It took her about a week to learn how to use them. She'll also get more training.

"But she was so motivated to learn. ... So often technology can seem intimidating to people, especially people who are a little bit older, and it doesn't have to be," Berger said.

Berger said people need to shift their perspective and think of assistive technology as a basic need.

"You tell me what part of this is not basic," Berger said. It changes the whole quality of life.

"She can totally run her life, where you were pretty much a prisoner before," Berger said.

Carol could theoretically find employment, Ardolf said.

"Carol's abilities with that computer ... she's basically employable because of that computer and Internet skill set now. She's an asset to the community," Ardolf said.

"You could counsel people from the comfort of your bed and share your experience in life," Ardolf said to Carol. "That's a big deal."

Carol loved her work at Catholic Charities Mother Theresa Home in Cold Spring, an adult foster care facility for adults with developmental disabilities. She helped teach daily living skills to clients, but had to quit when the multiple sclerosis progressed.

Now, she's enjoying her freedom and looking forward to learning more. Next up is teaching Carol to connect through social media.

"I bet I'll never get done learning," Carol said.

Follow Stephanie Dickrell on Twitter @SctimesSteph, like her on Facebook at www.facebook.com/sctimessteph, call her at 255-8749 or find more stories at www.sctimes.com/sdickrell.

Story Source: The above story is based on materials provided by SCTIMES
Note: Materials may be edited for content and length

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