Couple copes with ALS
 

Couple copes with ALS

By Erica Kritt, Times Staff Writer Wednesday, October 17, 2007


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Dylan Slagle/Staff Photo
Naomi and Jay Lowenthal talk about Jay's struggle with ALS, also called Lou Gehrig's disease, in Taneytown Thursday.


TANEYTOWN — Jay Lowenthal didn’t know until he was diagnosed with ALS that there was no support group in Carroll County.

The disease, which has no cure, is also known as Lou Gehrig’s disease.

Gehrig, a member of the Major League Baseball Hall of Fame, had his career cut short by ALS, which causes muscles in the body to waste away.

“Imagine you wake up and can’t talk anymore,” said Jay, who uses a voice synthesizer to help him communicate. “You can’t chew or drink. You can’t go to work, well, you may like that part.”

Jay was diagnosed in September 2006. ALS first attacked Jay’s respiratory system.

Jay and his wife Naomi travel to Johns Hopkins Hospital in Baltimore for occasional check ups and medical care.

Jay said he has between three to nine months left to live. Most people with ALS have between two to five years between diagnosis and death.

“Now, I’m just waiting to die,” Jay said.

Naomi and Jay said they would like to see a support group in the county. There are four support groups in Maryland, but Naomi said traveling and sitting for a long time is not something that is feasible for Jay.

“Get us some help here in Carroll, somebody needs to do something,” Jay said. “Jerry Lewis ain’t coming to Carroll County.”

Christine Kirkley, senior development associate with the DC/MD/VA chapter of the ALS Association said the chapter has limited resources and can’t start another support group.

Kirkley encouraged a grass-roots approach but warned that it would be important to find someone knowledgeable about local resources and the disease to lead the group.

The ALS Association is working on a national registry to find the number of people in the country with ALS.

“We are finding more people every day,” Kirkley said. “We say roughly 300,000 in the [United States] today are living with ALS.”

Six hundred people are expected to be diagnosed in Maryland this year, she said.

Kirkley couldn’t localize the statistics more, but Jay said he knows of others in the community with the disease.

“I know there’s people with worse, but this needs to be brought to light,” Jay said.

Jay and Naomi said they are lucky in some ways. Financially, the community has reached out.

Grace United Church of Christ in Taneytown has started a fund that has raised about $4,000.

Naomi is the director of the church’s day care, but neither Naomi nor Jay belong to the church.

The Rev. Steven Ostendorf-Snell said Naomi and Jay’s religion isn’t important; helping out the community is.

Naomi has taken an unpaid leave to help care for her husband but now has to go back to work so the family can have enough money to get by.

“The church has been so good to us,” Naomi said. “They do for us things people just don’t do anymore.”

Reach staff writer Erica Kritt at 410-857-7876 or erica.kritt@carrollcountytimes.com.
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