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Cerebral palsy patient’s condition gets worse

Gary Sandberg, 37, has cerebral palsy and uses a motorized wheelchair. He has not been able to get physical therapy for more than three months because of the pandemic. Sandberg lives with his sister, Celina Phelps, left. (Roberto E. Rosales/Albuquerque Journal)

ALBUQUERQUE, N.M. — “I miss my therapy,” Gary Sandberg said in a telephone interview.

Sandberg, 37, spends his days in a motorized wheelchair. He has cerebral palsy and lives at home with his sister, Celina Phelps.

When the COVID-19 shutdown hit in March, the weekly home visits from Sandberg’s speech and physical therapists stopped. He could no longer go to a weekly occupational therapy program outside the home.

Phelps said that missing the weekly physical therapy sessions – one of the services Sandberg receives under the state’s Developmentally Disabled Waiver program – is causing her brother serious problems, including muscle spasms in his back that are getting worse.

He is losing strength and putting on weight, and his posture in the wheelchair is getting worse each week, Phelps said. Those issues add to the back spasms and the pain.

“He’s thinking he needs to call his doctor and get pain medication for his back, Phelps said. “He hasn’t needed pain medication for quite some time, but there is no other option.”

Gary Sandberg’s condition has worsened as he has not been able to get physical therapy for more than three months. (Roberto E. Rosales/Albuquerque Journal)

Medical facilities, including physical and speech therapists, were allowed to reopen weeks ago as long as they follow COVID-19 safety protocols.

But therapeutic services for people on the state’s programs for the developmentally disabled are still restricted to telemedicine.

Phelps said telemedicine isn’t a realistic alternative for her brother.

“The therapist has to get him out of the wheelchair, onto his bed and help him stretch and do other exercises,” she said.

That’s something Phelps and other family members can’t do.

Phelps said her brother’s therapists believe there are safe ways to provide him therapy with home visits, and Sandberg said he was thinking of applying for an exception to the state Department of Health rules prohibiting the therapists from visiting his home.

But only three such exceptions have been granted by the Developmental Disability Supports Division – and all three were overturned by Health Department Secretary Kathy Kunkel.

Sandberg considers himself fairly independent, taking care of himself at home while his sister is at work.

Phelps describes her brother as an introvert who doesn’t miss socializing much. But as the weeks pass, she said, her brother is getting more depressed “because he’s in pain all the time. We have to weigh the risk versus benefits.”

From Gary Sandberg’s point of view, “Nobody’s listening.”

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