BLOOMINGTON — An accomplished singer, with a rare medical disorder, getting his speaking voice back thanks to an uncommon surgery.

A young boy with dwarfism thriving in therapy and daily life, even though he remains on a waiting list for some therapy because of delays in state payments.

A rural woman who is being called the poster child for medical marijuana even though she never tried marijuana until she began using it to manage severe side effects of chemotherapy for cancer.

The health journeys of dozens of Central Illinoisans have been shared throughout 2017 in The Pantagraph's Health/Life section. Three of those individuals updated us on their journeys since their original stories appeared.

To have a voice

Terry Ludwig spoke to members of The Sound of Illinois Barbershop Chorus on Dec. 12 about the performance at the annual Christmas concert two days earlier.

While his voice was "breathy" and soft, chorus members could understand him.

Just a few months before, he needed to use expressive hand motions to tell chorus members what he wanted in phrasing, tempo and volume.

"I'm thrilled to death with the progress," said Ludwig, director of the Bloomington-based chorus. "It (my voice) is getting better every week and full recovery is expected one year after surgery."

"He can communicate fully by his voice and that's been a real plus for the chorus," said chorus member Jim Waldorf. "We have a clearer understanding of what he wants done with a phrase that he can't show with his hands."

Pantagraph readers were introduced to Ludwig's sad irony on Aug. 18: the accomplished singer and chorus director could no longer sing and could barely speak because of a rare medical disorder.

Ludwig had spasmodic dysphonia (SD), a rare neurological disorder involving nerves that control the vocal cords. Involuntary spasms in the muscles of the larynx cause the voice to break up or sound strained, squeezing the voice to nothing in the middle of a sentence.

"It's almost like stuttering," Ludwig said in August. "What I want to come out is difficult to come out. It feels like someone is grabbing your throat."

Ludwig, 50, who lives in Springfield, began to get Botox injections into his vocal cords in 2007. But the injections were painful and expensive and the relief was temporary. He stopped in fall 2015.

By early 2016, he could no longer sing. By August 2017, his voice was reduced to an interrupted whisper.

Ludwig was approved for an uncommon surgery called laryngeal denervation reinnervation (DeRe), which was performed at UCLA on Oct. 17.

The surgery involved identifying, severing and removing the two nerves (one on either side of the vocal cords) that were sending abnormal signals to the vocal cords, tying back the nerve stumps so they don't reattach and taking and attaching healthy nerves from another part of the vocal cord to replace the two that were removed.

Ludwig showed the six-inch surgery scar above his Adam's apple but said he only needed pain medicine the night following surgery. He returned home Oct. 22 and was back at work at Menards in Springfield and back in front of the chorus a couple weeks later in an emotional reunion.

"I was able to talk immediately after surgery," Ludwig said. "It was weak. It was breathy. But I was able to talk.

"The spasms were gone immediately after surgery. I'd dealt with that for 15 years."

Waldorf said, "When he first came back, his voice was weaker than it is now but it was constant. There weren't the gaps that existed before. There were no longer times when he moved his lips and no sounds came out. It's been getting strong progressively."

"My voice is coming back stronger every week. It's still breathy and an octave lower than I would normally talk and I tire easily. But to sit and have a conversation without any effort is life-changing," Ludwig said.

As the new nerves grow into place, Ludwig's voice is expected to continue to get stronger.

At a dinner on Dec. 10, Ludwig sang a short piece of a song with other chorus members.

"It was a nice moment," he said.

Meanwhile, a benefit concert for Ludwig on Aug. 27 to raise $10,000 helped offset some of his surgery-related expenses not covered by insurance. More than 200 barbershoppers from across Illinois performed for 900 people, exceeding the dollar goal.

"It was amazing," Waldorf said. "I don't think anyone didn't cry at some point."

Any money left after covering medical expenses will go toward a music-related scholarship fund, Ludwig said.

Ludwig's surgeon did say that he isn't optimistic that Ludwig's tenor singing voice will return.

"I told him 'You don't know me very well,'" Ludwig said.

A marathon, not a sprint

Hunter Trefzger has more stamina than he did earlier this year, he can walk for longer periods of time, his handwriting has improved and he's doing well in kindergarten.

"Our progress is slow but he's going great," said his mother, Sarah Trefzger.

Hunter is a 6-year-old Bloomington boy with dwarfism who was without therapy for six months when he got caught up in a state funding crisis.

While some therapy has resumed and Hunter is progressing, he remains on waiting lists for occupational and speech therapy outside of school.

"It's just frustrating," his mother said. "I know there are people out there who can help him. But it's not just him. There are other children out there who need help (therapies) but the funding isn't there."

Pantagraph readers were introduced to Hunter on March 31. His arms and legs are short (he has a 10-inch inseam), his center of gravity is lower, he's not physically proportionate and his speech is slightly impaired.

He has had 40 surgeries to do such things as open his restricted airway and prevent paralysis from the neck down. When he began physical, occupational, speech/feeding and developmental therapy at Easterseals Central Illinois in Bloomington at 9 months of age, he couldn't control his body, recalled his physical therapist Jillian McGriff.

"We worked with him to hold his own head up, to sit independently, to crawl and to walk," McGriff recalled earlier this year.

But, during 2016, Easterseals Central Illinois cut ongoing physical, occupational and speech therapy for children on Medicaid and Medicaid managed care because of increasing state mandates and low Medicaid reimbursement. About 100 children lost services, including Hunter.

"How could the state let it get so bad for people who are fragile?" his mother asked.

For six months, Hunter was without therapy, although his mother tried to keep him physically active.

Marcfirst in Normal hired McGriff and Hunter began services at Marcfirst SPICE in February.

Christy Kosharek, director of Marcfirst SPICE (Services for Parent Infant and Child Education) said that since January the agency has added one developmental therapist, one licensed clinical social worker, two physical therapists, one occupational therapist and four speech pathologists.

SPICE averages 265 children on its caseload, compared with 170 a year ago, said Marcfirst CEO Laura Furlong.

Even so, Marcfirst has 18 children over age 3 awaiting speech therapy, two on a waiting list for physical therapy and eight for occupational therapy, Furlong said. Most of the children are on Medicaid.

"It's never good for young people waiting for services," Furlong said. "The sooner needs are addressed, the better for children's development and to help to prepare them for school."

Marcfirst has added as much staff as it can, she said. While the state has a budget and Marcfirst receives payments for services, reimbursement is 90 days late and rates haven't increased in 10 years.

"I'm very proud of our team for being efficient, responsive and passionate about serving children and adults," Furlong said. "But those issues have got to be addressed on a broader state level."

"When you see Hunter," Furlong said, "that's what it's all about."

Hunter gets physical therapy with McGriff at Marcfirst and is starting aqua therapy and vision therapy at other locations. Hunter has amblyopia, which means he can't see beyond four feet with his left eye.

At Sugar Creek Elementary School, he gets physical, occupational and speech therapy. He said he likes therapy.

"I like school because it's cool," he said. "The other kids always call me dude."

"Everything at school is fantastic," his mother said.

Sarah wishes Hunter also would get occupational and speech therapy at Marcfirst but she understands the agency's predicament.

"This is a marathon, not a sprint," she said.

'Poster child for medical marijuana'

Ellen Shawgo's pharmacist calls her "the poster child for medical marijuana."

She laughs because she gets the irony. Shawgo, who turns 61 on Dec. 30, never tried marijuana until she began using it to help to manage severe side effects of chemotherapy.

"It's helping," she said from her farmhouse north of Mason City. "I would recommend it to anyone who is having problems."

Shawgo's story appeared in The Pantagraph on Feb. 24 but she wasn't a stranger to some readers, working 15 years as a sports writer and copy editor for the Lincoln Courier, then 14 years as a copy editor and page designer for The Pantagraph.

She was healthy until late 2013 when she was diagnosed with stage 3 breast cancer, meaning it had spread beyond the area of the tumor. Chemotherapy was followed by removal of her right breast and some lymph nodes and 28 radiation treatments.

In early 2016, the cancer returned, this time in soft tissue near her collarbone. More radiation followed but the cancer had spread to her lymph nodes.

When she resumed chemotherapy in September 2016, the chemo took away her appetite. She couldn't eat much of anything and what she did eat, she threw up. In a few months, her weight dropped from 203 pounds to 119 pounds.

She talked with her home health nurse and they agreed that she should try medical marijuana to manage her nausea and vomiting and help her to get her appetite back. Her oncologist completed a form verifying her diagnosis, Shawgo completed the state application process and was issued her medical cannabis registered qualifying patient card in October 2016.

From Sept. 2, 2014, when Illinois Department of Public Health began accepting applications for the Medical Cannabis Registry, until Dec. 6, the department approved applications for 28,400 qualifying patients.

Shawgo goes to a medical cannabis dispensary in Springfield, where she can buy no more than 2.5 ounces every 14 days. She swallows one capsule each night and eats one edible each weekday afternoon. It costs her $36 a week.

Her appetite has returned, she isn't throwing up, her energy level has increased and her weight is back up to 158 pounds. The medical marijuana also helps her to sleep and relax.

"I think it's making me stronger. I don't feel great hardly ever," she admitted. "But I feel good enough to go out and do things. Some days, I'm nauseous and lightheaded so I stay home."

Shawgo's most recent scan in November showed no cancer growth. "That was obviously good news. I've been told it (her cancer) is not curable but it's maintainable. We're trying to keep it at bay."

While Shawgo is taking a break from chemotherapy so she can enjoy Christmas, she will resume treatments in January. She continues to wear prescription Fentanyl patches on her shoulder to ease her cancer pain.

"You just take it one day at a time, sometimes one hour at a time," she said. "The good days are worth the bad."

As far as the medical marijuana, "It's not cheap, but it's worth it to me. It can't be any worse than the other drugs (chemo drugs and Fentanyl) I'm putting into my body. I may be taking it forever as long as I continue to feel it works."

Follow Paul Swiech on Twitter: @pg_swiech


Health Reporter

Health reporter for Lee Enterprises Central Illinois.

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