Who cares?

By on July 30, 2014

Young Alzheimer’s victim takes matters into her own hands

Sometimes, when you want something done right you do it yourself. That's the approach Mary Read (center) is taking with her diagnosis of Young Onset Alzheimer's. She is pictured here with her sister Diane Shee and mother Mary Jane Howard. (photo by Merriell Moyer)

Sometimes, when you want something done right you do it yourself. That’s the approach Mary Read (center) is taking with her diagnosis of Young Onset Alzheimer’s. She is pictured here with her sister Diane Shee and mother Mary Jane Howard. (photo by Merriell Moyer)

“It was four years ago when I lost my job as a nurse in a doctor’s office. Every time I went into work I got yelled at, laughed at, and called stupid. Finally, they just fired me on a Friday,” Mary Read said.

She was having problems with her memory. It was a frustrating mystery, but the staff at the local doctor’s office was unsympathetic.

“I used to come home crying,” she continued, “and my mom would ask me why I continued to go in, and I said I told her I would not give up. People just don’t understand. I’d been with that doctor for about a year. They would try and explain certain things to me, and sometimes, with me, you have to keep explaining things. I don’t understand them, or it is slow sometimes. But they just kept yelling at me and laughing at me.”

Mary is the victim of Young Onset Alzheimer’s, a version of Alzheimer’s that attacks younger people.

“I was in my 40s when I started having trouble with forgetting things,” she said. “I went to Hershey Medical Center and they said it was either anxiety, or nerves, or depression, or (I lived in Peru for half a year, which is why they came up with this one) maybe it was a virus attacking my brain. So, I never went back to them. I just continued working, but the memory was getting worse and the comprehension was getting worse.”

This is what led to her mistreatment at work and the subsequent loss of employment.

“I had to go for testing then,” Mary said. “I had hours of memory testing, an MRI, and a PET scan. That’s when they diagnosed me with Alzheimer’s. I didn’t pass the memory tests. The PET scan showed that the dye they injected into me for the test wasn’t going up to certain parts of my brain. After the diagnosis, I went into a severe depression for a while.”

Eventually she thought, “Well, this isn’t helping me or anyone else,” so she decided to join the fight against Alzheimer’s. One challenge is the perception that Alzheimer’s is elderly-exclusive.

“Most people, when they hear of Alzheimer’s, they think of little old people in a nursing home in a wheelchair looking out a window waiting to die, but there are younger people who have it too,” she said.

Mary shared a story about a time when her mother accompanied her to an Alzheimer’s support group.

“They looked at Mom and said, ‘She doesn’t belong here.’

“I said, ‘Well, why not?’

“They said, ‘This is for caregivers.’

“I said, ‘She’s my caregiver, I’m the one who has it.’

“They didn’t know what to say.”

Because of the lack of a support system for people with Young Onset Alzheimer’s and the victims of Alzheimer’s in general, Mary decided to create her own.

“I saw that there was a need,” she said. “I started the first Memory Café in Lititz, at St. James, and there are eight or nine of us usually that attend. It’s for the people who have the disease. Their families can come too.”

This led to a partnership with Lancaster General Hospital, as they refer patients from their clinic to the Memory Café.

“There’s another guy, Harry Urban, who is also a mentor and we go talk to the newly diagnosed,” she said. “Right away, when you are diagnosed with Alzheimer’s you think it’s a death sentence. You think you can’t do anything, but in the beginning stages you can do things. It’s aggravating. You forget things sometimes and it’s upsetting, but there are still things you can do.”

Along with the volunteer service she provides to LGH, Mary organizes a variety of fundraising events and is an official ambassador for the Alzheimer’s Association.

“Sometimes you’ll see me set up tables at Stauffers or Oregon Dairy,” she said, “and I’ll have all my brochures out to bring awareness about Alzheimer’s, and people will give donations. Now I’m an ambassador, so I go to Capitol Hill. I’ve gone there a couple of times. I’m an ambassador to Congressman Pitts, actually. I’ve been on the House floor, speaking about Alzheimer’s.”

Mary has also spoken at the annual Alzheimer’s Symposium.

“I speak in Harrisburg every May,” she said. “When I was at one of these symposiums, I saw that doctor from Hershey Medical who said it was depression or anxiety or a virus attacking the brain. She looked at me and she said, ‘I think I misdiagnosed you.’”

Because there still is no cure for Alzheimer’s, Mary continues her effort to raise both awareness of the disease and money to support the Alzheimer’s Association.

“There has been an increase in the cases of Alzheimer’s, both Young Onset and normal,” she said. “There is no cure and they still don’t know what causes it.”

She has two fundraising events coming up in August, one at Isaac’s Deli and the other at St. James Catholic Church in Lititz.

The St. James event is set for Aug. 16 and will feature live music by Sebastian Janoski and the Red Rose City Chorus. Silent auctions and door prizes are also part of the program, and all money raised goes to the Alzheimer’s Association.

Prizes include gift cards for Weis Markets, Stauffers of Kissel Hill, Bomberger’s, the General Sutter Inn and much more. For tickets, or to volunteer to be a part of Mary’s team at the next Alzheimer’s Walk, call 333-0689.

Merriell Moyer is a freelance feature writer for the Record Express. He welcomes your comments at merriell071@gmail.com.


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