Man suffers from Huntington’s, falls through the cracks

BONNE TERRE — Desloge police officers found him living on the streets just a few weeks before Christmas.

He was found sleeping in the doorway of a local businesses. He hadn’t eaten in three days.

He’s 31 years old and suffers from Huntington’s Disease, a disease that will eventually kill him. His mother and brother died of the disease and a sister is living with the disease.

Huntington’s is a genetic neurological disease. Symptoms include jerky body movements and a decline in some mental abilities. The man’s symptoms include jerky movements, occasional slurred speech and trouble walking. Sometimes, he’s not fully alert or aware of what is going on, but he is described as mild-mannered and agreeable.

When Charlene Huskey, chairperson of Shared Blessings Homeless Shelter, found out he had the disease and no insurance, she took him to the East Missouri Action Agency to get Medicaid.

She soon learned he needed a diagnosis for a disability to get Medicaid, so she took him to a mental health clinic and then a local emergency room where he was turned down for care because it was not an emergency.

Huskey found it impossible to find a doctor who would accept a patient without insurance.

“It’s been a nightmare with him,” she said.

She called someone at Parkland Health Center who helped the man get into a Huntington’s unit at a St. Louis nursing home, where he got the diagnosis he needed and then Medicaid coverage.

Unfortunately, after a few weeks, a family member took him out of the nursing home and he went back to the streets. Another police department contacted Huskey when he was caught stealing food from a store.

She said the man had decided he didn’t want live in a place where everyone wore diapers and needed constant care. He wanted to live in his home town near family members. Huskey said he has a stepfather and two aunts, but they are not able to care for him.

She said the shelter, which opened 13 months ago, doesn’t have the resources he needs and he can’t continue to stay there.

Since returning, the man has been assigned a case worker from the Department of Senior Services. He has been denied a senior apartment because of his arrest record.

Using his disability income, Huskey said they plan to move him this week to an efficiency apartment in Bonne Terre. It’s not the perfect solution, but it’s what he wants.

Huskey worries he won’t be able to care for himself. He also has not been able to find a doctor. He needs medicine, which will help his symptoms but not postpone them.

While normally the shelter cuts their ties when someone moves on, Huskey plans to look in on him. She hopes his case worker will also check on him regularly.

Huskey is helping him to get furniture. She believes they have a couch and possibly a bed and table.

She doesn’t know what else to do for him.

This has been one of the hardest cases for Huskey. To her, it proves people can slip through the cracks.

Since opening, they’ve seen all kinds of people. There are people that use the system, she said. But then there are people who are truly homeless and have nowhere to go.

She said they’ve housed 12 to 13 people a night through much of the winter. If a person stays more than a week in the shelter, they have to look for a job and keep their area clean. They are asked to regularly attend an area church service.

Many people stay a month. Some stay 10 days. There was a family of four who stayed three months, which has been the longest stay. The woman was able to get a job and an apartment with the shelter’s constant pushing.

“Jobs are getting harder to get,” Huskey said. “And we are getting more calls. We are getting a lot of calls.”

She said donations from church members are the reason they have gotten as far as they have.

Huskey, the recent recipient of the Bonne Terre Chamber of Commerce Elite Service Award, is hoping the help from the community and several churches will continue.

They will have a community meeting at 7 p.m. Tuesday at Rosener’s in Park Hills. They are trying to get a grant to construct a new building and they need the community’s help.

For more information or to help, call Charlene at 573-358-2686.

The shelter is a Christian-based, non-profit organization.

Teresa Ressel is a reporter for the Daily Journal and can be reached at 573-431-2010, ext. 179 or at tressel@dailyjournalonline.com.