The Face of Alzheimer’s: Michael Ellenbogen

03 Thursday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Books, Early Onset, Face of Alzheimer's, Helpful Resources, Mom, Ruminations, The Early Years

≈ Leave a comment

Tags

alzheimer's books, alzheimers, alzheimers story, dementia, early onset alzheimers

book I recently read Michael Ellenbogen’s book From the Corner Office to Alzheimer’s and found this poignant account of living with the disease to be touching, heartbreaking, and eye-opening to say the least.

Ellenbogen, a former IT exec and self-proclaimed workaholic, was diagnosed with Early Onset AD in 2008. At that time, he was just 49-years-old and had noticed his earliest symptoms ten years earlier – before his 40th birthday. His forthright style helps us to understand what it’s like – from noticing the initial subtle changes, to trying to keep the wheels on the bus, so to speak, and live a “normal” life, to the search for a diagnosis, and beyond.

Yesterday, Ellenbogen wrote an enlightening post on katiecouric.com. When you have a few moments, pop over there and read My Name is Michael, and I Am Living with Alzheimer’s.

Stories like this not only serve to help crush the stereotype and stigma surrounding dementia, but they allow us – the family members, friends, and caregivers – to understand what it feels like to be that person.

In those early years with my mom, we didn’t know what was happening, and even once we did, we tended not to talk about it to avoid upsetting her. Maybe we thought if we buried our heads in the sand, it would go away. We spent years living in denial. I so wish we’d handled it differently.

Courageous people like Michael Ellenbogen who are willing to share their story are helping today’s families see that it’s okay to talk about it. In fact, it’s really only through talking that we have any chance of solving the problem…

Learn more about Michael by visiting The Michael Ellenbogen Movement on the web.

The Face of Alzheimer’s

24 Tuesday Sep 2013

Posted by Ann Napoletan in Advocacy and Awareness, Children and ALZ, Early Onset, Face of Alzheimer's, Inspiration

≈ 3 Comments

Tags

alzheimers story, alzheimers video, dementia, early onset alzheimers, eoad, younger onset alzheimers

In this lovely 7-minute long video, Ashley Bornancin shares her journey through Alzheimer’s. Imagine being a carefree 17-year-old, full of joy and excitement about what life holds in store for you.

And then, your mother is diagnosed with Alzheimer’s. In an instant, your world is turned upside down.

Watch and listen as Ashley tells her poignant story, and please share with others – let’s help the world understand that the face of Alzheimer’s isn’t always what we might expect.

Thank you, Ashley, for so beautifully and courageously sharing your story…

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-footprints One 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.