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 "A stranger no more" (article on man with LBD) 
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Post "A stranger no more" (article on man with LBD)
This article is from a Canadian newspaper. It's about a man with Lewy body dementia, described below as "rare." (It's the second most common form of dementia in the elderly.) Much of the article focuses on the wife's reactions to her husband's symptoms.

The man has one symptom we don't hear about too much: "His mouth started to clench uncontrollably, like he was chewing gum. He was prescribed a plastic mouth guard but chewed through it in two days. Eventually, Botox injections in his cheeks eased the problem.

A link to this article was posted recently on the LBDcaregivers Yahoo!Group. ... ?e=2906053

The Standard
Updated 5 days ago (December 30, 2010)

A stranger no more
Combination of a rare dementia and Parkinson's disease challenges St. Catharines man

He'd been making chicken fried rice for 20 years or so. It's his signature of sorts. And that's why the day his wife found him standing in front of the dishwasher in their St. Catharines home, looking around, blank, worried, instead of making the chicken fried rice as planned, their whole world changed.

"What are you doing?" asked Ida Mayer.

"I haven't a clue," said Don. "What do I need?"

He couldn't remember the ingredients. The utensils he needed. The steps. Nothing.

Ida had suspected Alzheimer's disease. Both her parents had it; she cared for her mother until her death in 1990.

And she had a bad feeling about Don. But after consultations with specialists, they got a slightly different diagnosis: a rare combination of Lewy body dementia and Parkinson's disease.

Lewy body causes symptoms including a progressive loss of memory, language and reasoning.

"Oh, God, it was hurtful," says Ida, 60.

"He kept saying he was sorry. That he's going to put me through this again."

She assured him it wasn't his fault. They were in this together.

Two years before that diagnosis, in 2006, Don was fighting cancer. A lump was found in his bowel, where the large and small intestines connect. He had surgery to remove the tumours and was just about ready to head back to work at the Hotel Dieu Shaver Health and Rehabilitation Centre as an occupational and physiotherapy aide, when he couldn't stop his left hand from shaking.

He had trouble gripping. Could barely hold a cup. He eventually became too embarrassed to go out to eat. The tremors spread to both his hands, even his legs.

His mouth started to clench uncontrollably, like he was chewing gum. He was prescribed a plastic mouth guard but chewed through it in two days. Eventually, Botox injections in his cheeks eased the problem.

Meanwhile, his brain seemed to have trouble processing information.

"She'd ask me a question," says Don, 63, "and I'd have to stop and concentrate."

Simple actions became complicated puzzles. Getting out of bed. Walking down the stairs. Cutting an onion. Getting up off the sofa.

"I'd have to think of the process," says Don. "Put your hands down. Push yourself up. Get up. And once I'm standing up, I'd have to concentrate on walking. How do I start walking?"

At the kitchen table, he'd stare at his plate. "I'd be sitting there thinking, do I use my spoon or fork? There was a constant debate in my mind. Do I eat my vegetables first? Or the meat?"

Making the bed might as well have been brain surgery. "I'd look at the bed and say, there is the sheet and there is the comforter. Do I grab them both at the same time? Do I grab the sheet first? I have to arrange the pillows. Do I do that next?"

He'd stop at the top of the stairs. "I'd say, 'I know I can do this. But why isn't my foot moving to the next step?' "

And when he walked, his once confident stride was reduced to small, shuffling steps.

While he relearned how to take longer strides at the Shaver, being the patient where he once helped people like himself was frustrating.

"He felt useless," says Ida.

He couldn't return to work and went on long-term disability. Ida continued to work full time at The Bay. Don stopped driving. And for awhile, stopped talking to friends.

"For a man so great with his hands ... he was my handyman," says Ida. "There was nothing he couldn't fix or do."

There was a day when his sons came over to remove a tub-surround in their bathroom in order to install a new one. Don was overwrought that his family had decided he couldn't do it himself. Sheer anger fueled his actions as he ripped it down with his own hands.

"He was so upset and shaking by the time I got home," says Ida. "He kept saying, 'I can do it. This is my job.' "

The following day, Ida took Don to their son's house while the new surround was installed.

"He felt ashamed that his boys had to do it for him," says Ida.

Ida was distraught, weighed down by worry and mental fatigue.

It was at the Alzheimer Society of Niagara that she found comfort and support. It's not only for people with Alzheimer's disease, but related dementias as well.

"I came here," she says. "I didn't know how I was going to do it."

Don began attending programs tailored to people with early-stage dementia. People who can still participate in their own decision-making, yet because of some limitations, might feel uncomfortable in a community seniors centre.

In addition, every week, a volunteer comes to Don's house. They talk. Play Yatzee. And go for walks.

While there are support programs for caregivers, Ida can't take advantage of them because she works. However, through the Caregiver Cafe, she pops in for some pampering. Staffed by volunteers, it offers services for caregivers from manicures to massages.

And over at Hospice Niagara, Don finds comfort in reiki. His shaking stops during the sessions and this often lasts for a couple days afterwards.

"It's the first time I have stopped shaking completely inside and out," he says.

Throughout all of this came a trial-and-error of medications. Just lately, he's been on a new drug that has given them hope.

"This is more of the old Don I've seen in three years," says Ida. She is smiling, squeezing his knee. "My husband is back."

For how long, no one really knows. But they're enjoying it while it lasts.

Dons talks more. He's made two meals in the past three weeks — lasagna and vegetable rice soup. He gives her hugs and kisses. And he holds Ida's hand.

"We've always held hands," she says. "Now he holds my hand back."

He's a part of the family again. When they visit, he takes part in conversations. Seems interested. Before, Ida describes his presence as "a body sitting there. He's coming back out of himself," she says. "It's the little things like that, that bring my husband back to me, that I've missed so much. I look into his eyes, and he's interested in us again. He's not a stranger in our house."

For more information on the Alzheimer Society of Niagara Region and its programs, visit or call 905-687-3914. In January, there will be several forums to help people better understand the disease.

Early stage programs
The following programs are offered by the Alzheimer Society of Niagara and are free.

* Beyond Words. A 10-week, discussion-based support group about talking, sharing and educating. There's a separate group for caregivers to have their own discussions.

* R.E.B.E.L. Group. A once-a-month social group for clients who have advanced through Beyond Words. Participants can express themselves, find support among peers while engaging in meaningful activities.

* Coffee Club. Every other week, a drop-in group for both client and caregiver. Clients interact with peers while caregivers meet separately to share experiences.

* Day Activity Program. A new program that started this summer with Trillium funding. It has a community seniors centre environment where participants can feel comfortable despite cognitive difficulties. They are guided through activities such as making lunch, cooking, reading and reminiscing, making a craft and exercising. Unless there is additional funding, this program will end in April.

Wed Jan 05, 2011 3:57 pm
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