• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Research

Early Diagnosis: Which Side Are You On?

26 Monday Aug 2013

Posted by Ann Napoletan in Advocacy and Awareness, Diagnosis, Early Onset, Research, Ruminations

≈ 8 Comments

Tags

alzheimers, alzheimers research, diagnosis

beach-footprintsOne of the more controversial subjects surrounding Alzheimer’s is whether or not it makes sense to push for early diagnosis. After all, this is a disease with no cure and no proven treatment, right? So, what good could come of knowing sooner than later?

Preclinical Diagnosis

A study recently published in the Annals of Neurology has found a link between the amount of mitochondrial DNA in one’s spinal fluid and the likelihood of developing Alzheimer’s. The research shows that asymptomatic patients as well as those already experiencing symptoms have lower levels of mitochondrial DNA, and perhaps most important is the fact that this can be detected up to 10 years before symptoms appear.

Professor Ramon Trullas, head of the study being conducted at CSIC Institute of Biomedical Research at Barcelona, explains that these findings could lead to viable treatment options in the preclinical stages – something that simply doesn’t exist today.

Younger Onset

The medical community believes that the sooner treatment begins, the more likely it is that symptoms can be controlled or delayed. Imagine receiving a younger onset diagnosis in your 40’s or 50’s. For those families, truly in the prime of their lives, a few years can make a significant difference not only in planning and preparation, but in the amount of quality time they have together.

Clinical Trials and Support

Early diagnosis also allows patients to enter clinical trials much sooner, giving researchers an opportunity to study the brain in the earliest stages of the disease. The hope is that this early research will lead to treatments that can halt Alzheimer’s long before symptoms begin to manifest themselves.

Another important aspect of early diagnosis is that it gives families a chance to engage meaningful support from the very beginning. I believe that alone can be immensely helpful. With my mom, one of our greatest mistakes was allowing denial to take over.

I remember well how defensive she was; I never wanted to rock the boat, so we didn’t talk about it.  Looking back, I think about how we could have handled things differently if we had faced reality at the first sign something was wrong. Building a support network would have been extremely beneficial.

More Questions Than Answers

At the end of the day, we all have to make our own choice. This is one of those situations where there’s really no right or wrong decision. Each of us is influenced by our own past experience, and although I had always been of the mind that I didn’t want to know, that changed as I watched my own mother slip away.

It will be interesting to see what happens over the next five years. Will insurance companies begin to cover PET scans and spinal taps to assist in the diagnosis of Alzheimer’s? If so, how many people will line up for the tests? Or will fear of becoming uninsurable force people to remain in the dark for as long as possible?

Lots of questions, not so many answers…  I suppose only time will tell.

I would love to hear your opinions. Leave a comment to weigh in on whether or not you think early diagnosis of Alzheimer’s makes sense.

 

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

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

≈ Leave a comment

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.”

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...

Week in Review…

05 Friday Jul 2013

Posted by Ann Napoletan in Advocacy and Awareness, Alzheimers.net, Blogging, Caregivers, Caregivers.com, Events, Films, Genetic Testing, Helpful Resources, Inspiration, Research, Tips, Walk to End ALZ

≈ Leave a comment

fireworks

Hope everyone had a wonderful Fourth of July! If yours was dry, that was a bonus! The Midwest is on day #14 of rain… but on the “bright” side, my plants are thriving!

Angel’s Perch

There’s been lots going on, but the thing I’m most excited about is the strong possibility of hosting a screening of Angel’s Perch right here in Columbus! The feature length film about a West Virginia family’s struggle with Alzheimer’s premiered last month in Charleston, and it’s been receiving rave reviews.

Set in scenic Cass, WV, this indie film which began as a Kickstarter project is the brainchild of J.T. Arbogast. The story is loosely based on his own family’s experience, and for Arbogast and his wife, Kim Dilts, it was a labor of love from start to finish.

For the Alzheimer’s community, it’s a wonderful way to promote awareness. In a recent  Charleston Gazette article, Arbogast was quoted as saying, “…I think it opens up that dialogue in a safe place. For the Alzheimer’s community, I think it’s a different way for them to engage their constituents.”

At present, I’m working with the great folks at Tugg.com on getting a screening arranged for sometime in August. Things are looking good, and I hope to receive final approval very shortly. Assuming it comes to fruition, our event will serve as a fundraiser for this year’s Walk to End Alzheimer’s, but I’ll share more on that later. Stay tuned!

Clinical Trials

This week on Alzheimers.net, I focused on the topic of clinical trials. Here’s a question for you: If you had genetic testing as part of a research study in which disclosure of results was optional, would you want to know the results? I was surprised to find my answer much different than it would have been a year ago.

Doing the research for this piece also reminded me that trials and research studies come in many flavors. Although we tend to immediately think of experimental drugs when the subject is mentioned, there are studies on diet, exercise, and other alternative treatments as well. The article includes links to some great resources you can visit to learn more. It’s definitely a thought-provoking topic.

Lotsa Helping Hands

Friday on Caregivers, we take a look at Lotsa Helping Hands – a powerful (free) web service and iPhone app created by Barry Katz. This tool provides caregivers with an easy way to ask for help when they need it and allows volunteer helpers to match their available time and talent with requests for assistance. Essentially, the site lets users build their own “caregiving communities” where they can share updates, store vital information, post requests, events, photos, blogs, and much more.

Perhaps most interesting is the story of Mr. Katz and how this service came to be. It’s a truly inspiring testament of how one can take heartbreaking tragedy and “make it count” for something.

That’s all for the moment. I’ve got lots of irons in the fire and good stuff to come, so stop back soon. For now, enjoy a safe and happy holiday weekend…

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on Pinterest (Opens in new window) Pinterest
  • Share on Reddit (Opens in new window) Reddit
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Share on Tumblr (Opens in new window) Tumblr
  • Email a link to a friend (Opens in new window) Email
Like Loading...
← Older posts
Newer posts →
© Copyright 2025
All Rights Reserved
The Long and Winding Road

Marilyn, BA (before Alzheimer's)

Contributor

Contributor

Recent Posts

  • The Latest Alzheimer’s Research Developments
  • National Caregivers’ Day: February 21, 2025
  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 443 other subscribers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 143,901 hits

Meta

  • Create account
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Monday ... on Caregivers
  • Telling the Story
  • Hiding In the Canned Goods Aisle...and Other Stuff
  • Walking a mile in his shoes...
  • CGSN: Focus on YOU!
  • Look for me on VoiceQuilt!
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness

Recent Comments

  • Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s | The Long and Winding Road… (alzjourney.com) | Ann Campanella on Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s
  • Betty Trimble on Film Review: Angel’s Perch
  • Carol on Caregiver PTSD: Fact or Fiction?
  • (3) Ritamae Reichardt on When Caring Takes Courage: A MUST HAVE Caregiving Guide
  • Mary Jo George on June 7, 2021: A Historic Day

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • R E S I S T Resources
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Subscribe Subscribed
    • The Long and Winding Road...
    • Join 443 other subscribers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d