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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Advocacy and Awareness

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.

 

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Walking to #ENDALZ

17 Saturday Aug 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, ALZ Assn Central Ohio, Events, Facts & Figures, Mom, Walk to End ALZ

≈ 2 Comments

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Walk to End Alzheimer's

banner_walktoendalz2Well, it’s that time of year again. The Walk to End Alzheimer’s has moved from June to September, and apparently that has thrown me off! I’m just now – with the Walk less than a month away – starting my fundraising in earnest, so I have a lot of catching up to do.

4M Strikes Again!

mom1This year’s event will take place on September 14, one day shy of 9 months since my beautiful mother was set free of this horrible disease. Last year, we raised $2,670, and I would love nothing more than to honor her memory by beating that – even if by just one dollar! If you can help, please visit Marilyn’s Mighty Memory Makers on the web to donate.

This is a disease that can strike any family – it doesn’t discriminate, and almost all of us have been or know someone who has been personally touched by its wrath.

The Numbers Don’t Lie

Consider this ….  By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 7.1 million—a 40 percent increase from the 5 million age 65 and older currently affected. By 2050, the number of people age 65 and older with Alzheimer’s disease may nearly triple, from 5 million to a projected 13.8 million, barring the development of medical breakthroughs to prevent, slow or stop the disease.

Based on those numbers, there’s no question that time is of the essence. Researchers are making advances every single day, but funding is just not there yet. In 2011, the NIH spent $3 billion on research into AIDS, $4.3 billion on heart disease, and $5.8 billion for cancer…  Compare those figures to what is being spent annually on ALZ research… less than $500 million.  

Mortality Rates are Rising

rib-purple_endalz_sm

Yet ALZ is the only cause of death among the top 10 in America without a way to prevent it, cure it or even slow its progression. Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases, including the number one cause of death (heart disease), decreased.

If you would like to help, please visit Marilyn’s Mighty Memory Makers on the web. It only take a few clicks to make a contribution, and every little bit helps.

Thank you!!!

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Emotions, Milestones, and Change

16 Friday Aug 2013

Posted by Ann Napoletan in A Place for Mom, Advocacy and Awareness, Alzheimers.net, Blogging, Caregivers, Caregivers.com, Grieving, Helpful Resources, Life After Caregiving, Mom, Ruminations, Saying Goodbye

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That faceAh, it feels good to stop for a bit and just sit back and breathe. The past couple of weeks have been emotional. I’ve made some difficult decisions, felt some great triumphs, sobbed uncontrollably, and felt overwhelmed with joy. Wow, talk about a mixed bag. No wonder I’m tired! (((smile)))

Another Milestone

Yesterday marked the 8-month anniversary of Mom’s passing. Truthfully, I can’t believe it’s August, and I really can’t wrap my head around the fact that she’s been gone eight months. How can that be? It was just about a year ago that Rodney came to Eason House and sang that beautiful song to her… one of my favorite memories. So bittersweet.

It was the end of August last year when things started to decline rapidly. A year ago. Four months later, she was gone. The other night, I wrote a piece titled, And in the Final Analysis, for Caregivers. I struggled with it initially, and then the words flowed easily and freely, like clear crisp water trickling down a gentle stream … It took me to some places I hadn’t been since those absolutely dreadful last three weeks of her life. Ultimately, I think it speaks to where I am right now – in my head and in life.

A Change in Direction

And that brings me to a decision I made a week or so ago. I’ve been writing for A Place for Mom for a year now, and have enjoyed every second of it. The team out in Seattle has embraced me as part of their group and I’ve learned so much and grown a great deal as a writer. Perhaps most importantly, those same folks I’m pleased to call my friends have given me the confidence to go forward and continue reaching out to others through my writing. It’s without question one of the most fulfilling things I’ve ever done.

But, all of that said, I’ve decided to step back and slow things down a bit. Yesterday’s Caregivers post was my last as a contract blogger for APFM. I hope to contribute as a guest from time to time, but I’m going to focus my attention on redesigning this blog and making it what I know it can be – a comfortable, compassionate place where families traveling this Alzheimer’s/dementia journey can come for support, solace, and information from someone who has been there.

A Note of Appreciation

So… all of that said, I hope you will continue to follow me here on The Long and Winding Road and spread the word to others who may be interested. In return, I will do my best to provide insightful posts from the heart, as well as the latest news, links to other valuable resources, and much more.

As I mentioned, I also hope to do some guest posts for APFM and others, so I’ll keep you “posted” (no pun intended) on that. In the meantime, I sincerely thank everyone who has taken the time to read my writing, whether here or over at Caregivers or ALZ.net. Being able to connect with other caregivers and family members has helped me through what has been a very difficult year. And just the fact that you care enough to keep coming back is beyond humbling…

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Marilyn, BA (before Alzheimer's)

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