Living with ALS

Wiggling fingers and toes. Speaking at the speed of thought. These are elements of the human experience we often take for granted.

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By: Bailey Pennington

But Tony Solazzo doesn’t. He remembers the first few times his body stopped listening to his brain.

“I started tripping and falling … I’d miss my steps by about an inch.”

Solazzo is one of an estimated 800,000 Americans currently diagnosed with amyotrophic lateral sclerosis, or ALS.  It’s a motor neuron disease which progressively robs its victims of muscular control. Many people know it best from the Ice Bucket Challenge, a social media-driven fundraising craze that brought this disease into the national spotlight last year.

Solazzo knows it by the ways it has modified his everyday life, down to each word and movement. In a motorized chair decked out with Star Wars decorations and a goofy noisemaker (to entertain his grandkids, he says), he describes his feelings … or lack thereof.

“I know where they should be, but I can’t feel my legs. I don’t know where they are.”

With no known cure, ALS takes away the livelihood of those it touches—fifteen new patients a day in the United States. Doctors like Richard Bedlack are determined to give patients back what’s been taken from them.

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“There’s a tremendous sense of hope in the community now,” said Bedlack as he queued up a five-minute film he created on alternate treatments for ALS. His clothes are colorful, and so is his office at the Duke ALS Clinic in Durham. Bedlack says his eye-popping prints and whimsically-decorated surroundings are an intentional choice, meant to bring hope and cheerful diversion from the suffering that often accompanies this condition.

Solazzo is one of Bedlack’s many patients. Bedlack orchestrates hours of physical therapy, ensuring that individualized care and comfort are prioritized. When he’s not treating patients directly, he’s taking their cause one step further. Bedlack runs a website called ALS Untangled, where he talks to ALS patients and helps them research and verify the soundness of alternative treatments. He feels a cure is on the horizon.

“Things are so much better now than they were 15 years ago. We’ve got a ton of small things that we have to offer which add up to make a big difference in the quality of a person’s life and the length of their life,” said Bedlack. He advises anyone with an ALS diagnosis to find their closest specialized clinic to access all the resources available to them. But Bedlack also encourages patients to become a part of the effort to cure this disease.

“Get into as many research studies as you can. Help us find the cure.”

Photo Story:

  • Tony Solazzo, 63, worked at UNC hospitals for over twenty years. In 2007, he started noticing little moments. He would miss a step on the way up the stairs or he would trip slightly when walking to work. After multiple MRIs and cat scans, doctors finally diagnosed him in 2008 with Primary Lateral Sclerosis, a slow-progressing form of ALS that mainly affects the limbs. Many doctors give a prognosis of 2-5 years for patients diagnosed with ALS, but Tony has lived for eight years. His wife, Liz, says, "I could never do this. He has the patience of Job."
  • Liz and Tony Solazzo renovated the basement of their home in Graham, North Caorlina to make a wheelchair-adapted open living space after Tony was diagnosed with ALS. At the beginning of the diagnosis, they often went to support groups. "I thought I was going to go there and everyone was going to be like me," said Solazzo. "No one is the same. They've all been different."
  • Solazzo spends time with his grandchildren as much as possible. Rachel (left) and Emma (right) play ball with him after school in order to try to keep his hands functioning.
  • Rachel spends time with Solazzo in his basement in Graham, North Carolina. She is often over at her grandparents watching movies, having sleepovers, and playing games.
  • LIz Solazzo browses through her travel photos on her Facebook in their home. Their days often fill up with doctors appointments, but they make time for going out to eat and watching UNC basketball. "We aren't in immediate distress," says Liz. "We have been through the acceptance and grief stages."
  • Solazzo watches on as his wife, Liz, and grandaughters, Rachel and Emma, play with the dog and experiment with a digital camera.
  • In 2013, Tony Solazzo decided it was time to move to a wheelchair full time. He fears that his ALS will progress in the next year and he will lose the ability to write , so he has began to write down important family history in notebooks such as songs from his days in the U.S. Marines that he hopes to pass on to his granddaughters.
Bailey Pennington

1 Comment

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