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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Early Onset

Maria Shriver Looks at Early Diagnosis

17 Wednesday Jul 2013

Posted by Ann Napoletan in Advance Directives, Advocacy and Awareness, ALZ Assn - National, Early Onset, Genetic Testing, Research, Signs and Symptoms

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Source: http://www.today.com/health/life-more-precious-now-why-early-detection-alzheimers-important-6C10647845

Linda Carroll
TODAY contributor

The memory problems started when Nancy Albertson hit her late 50s. Some may have blamed stress or poor sleep for difficulties finding words, but Albertson’s mother had died from Alzheimer’s disease and she knew it the early warning signs.

An articulate woman who taught English as a second language, Albertson wasn’t used to searching for a word and coming up empty.

“I wanted to say something or write something and I thought, I can’t get that word,” she told NBC News special anchor Maria Shriver, who also lost a parent to the disease. “I’m not sure what that word is that I want to use.”

Her family doctor initially assumed there must be some other cause for Albertson’s memory loss. “I think it’s something that you don’t think of in people under the age of 60 very often,” Dr. Gordon Golden, a primary care physician told TODAY.

But then Albertson’s husband, Rick, added some more detail.

“Her husband Rick was very concerned that this was not the same Nancy he had known and loved for years,” Golden said.

Golden referred Nancy to a neurologist who eventually diagnosed her with early onset Alzheimer’s disease.

And just like that Nancy Albertson became one of the faces of a disease that is becoming epidemic. More than 5 million people in the United States have Alzheimer’s and that number is expected to nearly triple by the year 2050, according to the Alzheimer’s Association.

About 4 percent of that 5 million, or about 200,000 people, have early onset disease, just like Nancy Albertson, according to the Alzheimer’s Association.

Because Alzheimer’s is so much less common among people under the age of 65, doctors often assume that there might be another explanation for symptoms.

But there are signs that should ring the alarm, including:

  • Memory loss that disrupts daily life
  • Challenges in planning or solving problems
  • Confusion with time or place
  • Difficult with language or reading
  • Changes in mood and personality

New guidelines being presented at the Alzheimer’s Association International Conference in Boston this week may help doctors more easily diagnose the disease. Other researchers at the meeting are reporting scanning studies that allow doctors to diagnose the disease earlier – even before a patient has any observable signs. The hope is that a treatment will be found that will halt the disease that attacks the brain some 20 years before it causes symptoms.

While there is no cure for Alzheimer’s right now, there are medications that help ameliorate its symptoms. Those medications have helped Nancy Albertson live a more normal life – for now at least.

While some people might shy away from getting an early diagnosis when there isn’t a cure, NBC chief medical editor Dr. Nancy Snyderman says it’s extremely important to find out.

“I can’t underscore enough the need to get family business in order and knowing that you are legally and financially OK,” she said. “And having that conversation.”

The other reason to find out, Snyderman said, is to have an opportunity to participate in clinical trials testing out new medicines.

Once Nancy Albertson knew she had Alzheimer’s, she struggled trying to decide how to tell her four siblings about her diagnosis.

In the end she decided to write them a letter, in which she explained, “one thing I am fortunate for is that I am able to get more help than mom did.”

She also told them that they shouldn’t worry about her. “I feel much closer to God. And between God, my husband, and the medicine, I think my life is better now – because life is more precious now.”

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Pat Summitt stepping down as Lady Vols’ coach

18 Wednesday Apr 2012

Posted by Ann Napoletan in 4M, Celebrities, Early Onset, Face of Alzheimer's, Pat Summitt, Walk to End ALZ

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I was stunned last year when Pat Summitt announced she was suffering from Alzheimer’s.  A strong, independent woman.  Charismatic.  Role model for others. My mom shared these same traits, and I think that makes it even harder to imagine her, like Coach Summitt, falling prey to the disease.   I’ve said so many times over the years that my mom was the LAST person I would have ever expected to suffer its wrath, and I felt the same about Pat Summitt.

Well, today, just eight months after the announcement, at age 59, Pat Summitt told the world she is stepping down as head coach.  On a positive note, the winningest coach in college basketball history – male or female – will assume the title of “head coach emeritus.”  While she will no longer actively coach the team, it sounds like she will continue to be very much a part of the program for as long as the disease allows.

My mom always loved watching women’s basketball and had great respect for Coach Summitt.  Who would have imagined that the two would end up having so much in common?  Pat Summitt – and my mom – remind us that Alzheimer’s can strike anyone, regardless of age, gender, status, or strength of character.  It knows no bounds, and  does not discriminate, which makes is so terribly imperative that a cure is found…

To read more about today’s announcement, follow this link and if you would like to contribute to this year’s Walk to End Alzheimer’s or join Marilyn’s Mighty Memory Makers, visit our team site.

… Until next time… Carpe diem…

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