Category Archives: Genetic Testing

Alzheimer’s Round Up – Nov 2018

12 Monday Nov 2018

Posted by in Advocacy and Awareness, Be Brain Powerful, Brain Health, Celebrities, Children and ALZ, Events, Face of Alzheimer's, Genetic Testing, Research, Round Up, Treatments and Therapies, USAgainstAlzheimer's

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Greetings, friends. It’s time for an Alzheimer’s Round Up. As always, thank you so much for reading. Stay tuned for some tips as you prepare for the upcoming Thanksgiving holiday.

Until then…

Be Brain Powerful

This past week, the Be Brain Powerful campaign launched in NYC. This WomenAgainstAlzheimer’s campaign aims to bring awareness to women’s brain health and “ignite a cultural transformation in the way we care for our brains.” We talk about taking care of our bodies, but why don’t we talk about taking care of our brains? Be Brain Powerful will be a formidable health and wellness initiative, and Marilyn’s Legacy is proud to be a partner in this movement! If you had to choose one word to explain what brain health means to you, what would it be? Mine would be, independence.

Alzheimer’s Talks – Nov 20

Coming up at 1pm ET on November 20, UsAgainstAlzheimer’s hosts AlzTalks: A Biomarker Test – Now and in the Future.  During the call, Scott Lewis, Director of Alzheimer’s Disease Diagnostic Pathway at Biogen, will discuss techniques used today to diagnose Alzheimer’s and what diagnosis might look like in the future. In addition, Melissa Bianchi, an expert in patient protections and partner at law firm, Hogan Lovells, will share thoughts on how families should prepare for receiving biomarker confirmation. The call is free, register by clicking here.

Keep Asking Questions

Retired Justice Sandra Day O’Connor, the first female ever named to the U.S. Supreme Court, recently disclosed she has been diagnosed with dementia, most likely Alzheimer’s disease. O’Connor retired from the Court in 2006 to care for her husband, John, who also had the disease. In his touching article for Psychology Today, Greg O’Brien shares the story of meeting Justice O’Connor in Arizona back in the 1970’s and the mentorship and friendship that ensued. Click here to read Greg’s article.

Exciting Research at West Virginia University

Judy Polak was diagnosed with Alzheimer’s in 2014 and is now the only person in the world to undergo a new procedure using ultrasound waves in an attempt to slow the disease. The key is temporarily opening the blood-brain barrier, allowing antibodies from the immune system to pass into the brain and break up the plaques. You can read more about the trial, overseen by Dr. Ali Rezai, Executive Chair of WVU’s Rockefeller Neuroscience Institute, by clicking here.

An 11-Year Old Making a Difference

Hailey Richman is a force to be reckoned with! Her grandmother was diagnosed with Alzheimer’s when Hailey was just four, and that experience sparked her passion for helping others. Noticing there wasn’t much support available for kids, she started Kid Caregivers, a website providing support and encouragement to children affected by the disease. To learn more about how Hailey is using puzzles to help thousands who are living with Alzheimer’s, click here.

 

 

 

 

 

In Alzheimer’s News: Weekly Roundup

17 Friday Jul 2015

Posted by in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Family, Genetic Testing, Pharma, Round Up, Sandwich Generation

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Familial Alzheimer’s at Age 34

Image Source: Montgomery Advertiser

Carrie Richardson – Advocate Extraordinaire Heads to DC. (7/16)

“She’s a 34-year-old single mom of three from Montgomery, who was diagnosed more than two years ago with Early Onset Familial Alzheimer’s, plans to head to Washington, D.C., on Friday to bring awareness to a disease that has taken the life of her grandmother, father, uncles and cousins. All were diagnosed in their 30s.”  ~Kym Klass, Montgomery Advertiser

To read the full article, visit –> http://www.montgomeryadvertiser.com/story/news/2015/07/15/mom-alzheimers-treks-dc-bring-awareness/30207805/

Coming to a Pharmacy Near You: Namenda Generic!

At last, a generic form of Namenda (aka Memantine) is finally on the market. This means significant cost savings for families who have had no choice but to pay the exorbitant price for the brand name drug! Bob DeMarco of the Alzheimer’s Reading Room shared more in his July 15 post.

“When Aricept (Donepezil) went generic the price immediately fell from $280 for a 30 day supply to $153. Six months later when other generic drug makers were permitted to offer the drug the price fell to less than $10 for a 30 day supply.” ~Bob DeMarco

To read the full post –> http://www.alzheimersreadingroom.com/2015/07/generic-namenda-is-now-available-for.html

Lost and Found in the Land of Dementia

Image Source: http://www.knopps.com

This is an excellent opinion piece from the NY Times (7/11). I can relate to so much of what the author describes. Once we learn to drop expectations, we begin to see through the Alzheimer’s fog, realizing how much of our loved one is still there. Different, yes, but very much still there. Lost ..and then found. A good characterization.

“I stopped concentrating on the content of her words and, instead, went along with every twist. Once she said she wanted to go somewhere for a picnic. ‘Why, Mom?’ I asked. She said: ‘So we can boil the chicken.’ Rather than grilling her about what she meant, I asked what kind of chicken we should boil and where we should hold this picnic.” ~Steve Knopper

To read the full article, visit–> http://www.nytimes.com/2015/07/12/opinion/sunday/my-mother-lost-and-found.html?smid=fb-share

Missing Jim: The Reality of Alzheimer’s

If you aren’t a follower of Karen Garner’s blog, Missing Jim, I highly recommend it. Jim Garner was diagnosed with younger onset Alzheimer’s in 2011. He wasn’t even 50 years old. Karen had noticed changes when Jim was 45 and she was just 37; at the time, their children were 3 and 6. Difficult to even fathom, isn’t it?

Now as Jim’s declines, Karen juggles the roles of full-time caregiver to her husband and mother of two young kids still at home. Earlier this week on her blog, Karen shared an update on the frightening turn of events that occurred when Jim recently visited his parents in another state.

As I read her last two posts (7/8 and 7/16), I found myself wondering how I would have handled the situation – I fear it would not have been pretty. Reading about their experience is a stark reminder of just how cruel and unpredictable Alzheimer’s can be.

“Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone.” ~Karen Garner

Maria Shriver Looks at Early Diagnosis

17 Wednesday Jul 2013

Posted by 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.”