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Facing Alzheimer’s instills fear, and inspires action, for Timmons family

  • Ginny Timmons, 70, is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a %K race for June 23 to raise money for the research. <br/><br/>(ANDREA MORALES / Monitor staff)

    Ginny Timmons, 70, is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a %K race for June 23 to raise money for the research.

    (ANDREA MORALES / Monitor staff)

  • Ginny Timmons, 70, walks with her dog Katrina down the path where the 5K walk/run she's organizing in late June will take place on May 17, 2013 in Northfield. Timmons is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a 5K race for June 23 to raise money for the research. <br/><br/>(ANDREA MORALES / Monitor staff)

    Ginny Timmons, 70, walks with her dog Katrina down the path where the 5K walk/run she's organizing in late June will take place on May 17, 2013 in Northfield. Timmons is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a 5K race for June 23 to raise money for the research.

    (ANDREA MORALES / Monitor staff)

  • Ginny Timmons, 70, is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a %K race for June 23 to raise money for the research. <br/><br/>(ANDREA MORALES / Monitor staff)

    Ginny Timmons, 70, is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a %K race for June 23 to raise money for the research.

    (ANDREA MORALES / Monitor staff)

  • Ginny Timmons, 70, is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a %K race for June 23 to raise money for the research. <br/><br/>(ANDREA MORALES / Monitor staff)
  • Ginny Timmons, 70, walks with her dog Katrina down the path where the 5K walk/run she's organizing in late June will take place on May 17, 2013 in Northfield. Timmons is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a 5K race for June 23 to raise money for the research. <br/><br/>(ANDREA MORALES / Monitor staff)
  • Ginny Timmons, 70, is taking part in studies at Boston University as a part of tackling her Alzheimer's diagnosis head on. She's organizing a %K race for June 23 to raise money for the research. <br/><br/>(ANDREA MORALES / Monitor staff)

Ginny Timmons is a doer.

A former Army nurse and mother of nine, she volunteered as a court advocate for abused and neglected children, and at the N.H. Veterans Home.

She knows how she’d react if a friend or acquaintance shared the news they had been diagnosed with early stage Alzheimer’s disease. She’d do something: “That’s just how people are,” she said.

So shortly after receiving her own early-stage Alzheimer’s diagnosis last fall, Timmons, 70, began organizing a 5K race for this June to raise money for Alzheimer’s research. She printed up business cards with information on the race and sent them out with her Christmas cards. She still keeps a stack with her and hands them to people she hasn’t seen in a while.

“My recent diagnosis of having Alzheimer’s has resulted in an increased focus on mental and physical exercise; socialization; a need for medication and always prayers, and ACTION,” it reads.

She also agreed to participate in a number of studies on the disease at Boston University.

In 2013, caring for the 5 million people with Alzheimer’s will cost Medicare and Medicaid an estimated $142 billion, in addition to costs to families for care and missed work, according to the Alzheimer’s Association.

And for now, Timmons’s worries about losing her faculties, her chatty demeanor and quick, loud laugh, are warranted. Medication can slow the symptoms but can’t stop the disease’s progression. The exact cause of the disease isn’t known, but the clearest indicators of it are two abnormal structures in the brain: plaque between nerve cells made of the protein amyloid, and tangles within nerve cells, made of the protein tau.

There is no cure, and no way to stop the progression of either amyloid or tau. But research at several institutes is promising.

At Harvard University and Brigham and Women’s Hospital, researchers are due to launch a study this fall of a drug that could break up the amyloid plaque in people with mild forms of the disease.

At Boston University, Timmons is working with researchers who are trying to create a clinical test to diagnose or predict the development of Alzheimer’s. Current tests are mostly based on neurological images or cognitive abilities. The BU study is a pilot in the early stages, but also works on amyloid, trying to measure its levels in patients’ blood.

Timmons never saw herself as the type of person who would submit to medical research before, but “I just think there’s such a need,” she said. “It’s the only way they’re going to be able to do anything about it.”

Talking about the disease and raising money for research are Timmons’s ways of breaking through the culture of silence around dementia and Alzheimer’s, a culture that she and her 11 siblings were part of even after both her mother and a maternal aunt died with severe dementia.

“I don’t think we talked about it. Our generation doesn’t talk much more than our parents’ generation did, and before Mom, I don’t think I knew of a single other person with it,” she said.

Now that’s she’s been diagnosed, her siblings and their spouses are more attuned to potential symptoms.

“And my young people,” as she calls her children, “are even better, I think.”

One step at a time

For the next generation, talking about Alzheimer’s may be more acceptable, encouraged even, than in Timmons’s parents’ day. But the fear of the disease can be as paralyzing as the former stigma.

What could you say when two generations before you have been struck with a slow, incurable disease? Not much, said Timmons’s eldest child, 42-year-old Jeanne Timmons of Concord.

Though she and her siblings have been watching over the years as their mom gradually exhibited more symptoms, they’ve not talked much about their own potential diagnoses. Maybe they will someday, but now, just seven months after Ginny’s official diagnosis, is too soon, Jeanne said.

“We are more open than what I understand of her generation,” she said. “Since she was first diagnosed, she has gently said, ‘If anyone is interested, these are things you can do.’ I’m grateful for that, but this year, I think we need to just survive. Then we can work on things beyond that.”

If the clinical drug studies being done now come to fruition as early as possible, it may be too late to stop Ginny Timmons’s disease, but it could help her children.

Jeanne didn’t hesitate when asked what she’d do if the BU research does yield a diagnostic blood test, or if the Harvard work creates a vaccine.

“I don’t know that want is the right word. But I would definitely do it,” she said, knowing two generations of women in her family have faced the disease.

“It is a constant worry. What we know is there is some genetic predisposition, that the chances of my getting it, or any of us getting it, are stronger than the general population,” she said.

The back-and-forth of research touting miracle immunity-boosters – blueberries, pomegranates, word games, exercise – leaves her only more anxious.

“They don’t know. It’s something I hope in the future I’ll address. I’m scared, but I don’t want to live my life by it, because they don’t know,” she said.

Decades younger than either her mother or grandmother were when they started showing symptoms, she and her younger sister still grant themselves freedom to enjoy some gallows humor: “We were trying to remember what we had seen that worried us about Mom initially, and we said, ‘Is it ironic or what that we can’t remember?’ ”

‘Tiny things’

But what they saw in their mom was more than just forgetting names occasionally, although Ginny said that’s been the hardest symptom for her to accept, knowing that people love to hear their own names when they greet a friend.

“It’s more than that, though,” Jeanne said. “There was no earth-shattering moment. It’s these tiny things, things that stick with you, because you know the person, and you know what’s out of character, what’s not Mom.”

And having seen that loss of identity is what inspires her to hope for a cure, to know she’d want to act as soon as she could.

“I don’t know if there’s an afterlife. If there’s a God or if there’s something beyond what we are here. It seems to me though that what we are is in our brain. What we learn, what we keep, how we process the world, that’s who we are and it’s all there in our brain,” she said. “The idea that Alzheimer’s could remove those memories – it essentially removes who you are.”

She says she’s been amazed by her mother’s response to her diagnosis. Organizing the race and participating in the studies “is empowering for her, and while she’s always been a very big advocate for things she cared about, her desire to help other people overcame any desire to be private about something that could have been very private,” Jeanne said.

She had no instinct to withdraw, Ginny said, no desire to keep her diagnosis private, not after seeing families of veterans who struggled through dementia without a broad base of support.

Keeping things quiet “doesn’t help anyone. Put it out there,” she said.

“People I don’t even know that recognize me from the parish, they are so affectionate. They say, ‘We are with you,’ and I know they’ve heard through the grapevine that I have Alzheimer’s. And when they say that, it’s like a double whammy. I feel first, ‘Thank you.’ And also, ‘Yes!’ Because it’s getting out there.

“I don’t mind if I have it across my forehead if it means people are talking about the disease. I’m mouthy now because I can be verbal. I don’t know where I’ll be in a year or two or six down the road. While I can do something, I want to do something.”

To register for the Timmons Team 5K run/walk on June 23, visit thetimmonsteam.com.

(Sarah Palermo can be reached at 369-3322 or spalermo@cmonitor.com or on Twitter @SPalermoNews.)

I am a Senior citizen I am going to blame the Seniors on this issue, here is why 1. People are still waiting for Billion dollar big pharma drug makers to "give" them a drug to stop the illness. Big Phrama wants money and does not care about you 2. Families do nothing but accept an Alzheimer's diagnoses but do not attempt to use natural cures. Instead they feel sorry for themselves or their loved ones 3. Walks for the cure are a waste of time to make money, take the illness into your own hands just google "MAL ALZHEIMER"

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