Showing posts with label young onset. Show all posts
Showing posts with label young onset. Show all posts

Monday, March 28, 2016

Genetics and Your Risk of Alzheimer's


In my classes and support groups, I am often asked how family history affects the risk of Alzheimer's Disease (AD).  It's not a cheerful topic since we cannot change our genes, but it's a fair question that certainly deserves some discussion.

Keep in mind, what do you do if you are genetically considered a higher risk?  Will you change your lifestyle to reduce your risk? Will you live with life to the fullest and take more chances?  Will you plan your future more carefully to make the best of it?

I am not a geneticist, so it's my pleasure to reintroduce Dr. Frank Longo from Stanford who first appeared in the actionable blog post on employing regular exercise to halt brain shrinkage.

In Alzheimer's, it is known that there are two categories:

1. Early Onset AD (or Young Onset or Familial)

  • Less than 2% of all AD cases
  • Development of AD before age 65; onset in 40's and 50's

2. Late Onset AD

  • More than 98% of all AD cases
  • Development of AD at 65 or older

Genetic Risk: Young Onset 
Dr. Longo uses the novel and film "Still Alice" as a popular reference of Young Onset AD. In the story, Alice develops AD symptoms at the age of 50.  For a person with Young Onset, their children have a 50% chance of developing the horrible disease.

He goes on to discuss the more probable Late Onset AD. I will explain the handy dandy slide that is pictured below.




Genetic Risk: Late Onset 
Keep in mind that we all have 23 pairs of genes for a total of 46. The 2 ApoE genes can vary between the E2, E3, or E4, with E4 associated with Alzheimer's Disease.

No Family History (hx)
The left box on the above slide, as you can see, is for those individuals with no parent, grandparent, etc., with AD.  My grandfather Milton experienced symptoms of dementia, but we suspect that it was related to alcohol damage rather than AD.  There is no way for me to know for certain.
  • Average risk of 15% over lifetime
  • Without the infamous "E4" version of the ApoE gene, a 9% risk
  • With the E4 version, a 30% risk

One Parent with AD
Following the chart, Dr. Longo offers three options when having one parent with AD:
  • You have no copy of the E4, 30% risk
  • You have 1 copy of the E4,  45% risk
  • You have 2 copies of the E4,  60% risk
Do You Want to Know if You Have the ApoE4 genes?
There are tests to find out if you have the E4 version of the ApoE pair of genes.  Dr. Longo mentions the company 23andMe who will allow you to send a sample of alive for a genetic analysis.  At the time of the presentation in 2015, 23andMe was shutdown by the FDA. Even though they are now allowed to resume genetic testing, they will not offer analysis of the ApoE gene pair if you are from Canada.  If you would like to see a Canada ApoE sample report with plenty of disclaimers, click here.

While I am currently not interested in knowing if I have the E4 version, I can see how some would like to know.  It's important to consider your potential benefits and potential disadvantages.  A clean diet and regular exercise are two prudent ways to potentially reduce the risk of AD and many other diseases. 

Now you...I'd love to hear your comments - would you want to know what variants of the ApoE gene that you have and what drives your answer?

In Peace, 

Matt 

*PS- Subscribe and share this blog article (then let me know at Matt@CarePartnerMentoring.com) and I'll email you links to more videos and information on genetics and dementia.   

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here. 









Sunday, March 20, 2016

Could the Key to Reversing Dementia be Challenging but Attainable?

In 2014, Dale Bredesen, MD published a paper documenting a study of 10 people following a non-pharmaceutical regimen to improve their "memory loss associated with Alzheimer's disease (AD), amnestic mild cognitive impairment (aMCI), or subjective cognitive impairment (SCI)" (Bredesen 2014). Among the many elements of the regimen, included a low grain diet, 8 hours of sleep nightly, exercise most days of the week, and several over-the-counter supplements.

Let me point out that this is considered an anecdotal study even by Dr. Bredesen, meaning that it was not designed with the scientific rigor of a prospective randomized control trial (RCT).  I discuss RCTs in this post on the positive impact of exercise on your brain health. In his summary, Dr. Bredesen mentions the need for more research in this area, including a controlled trial.

Of the 10 study participants, all of whom exhibited symptoms of memory challenges, 9 of them showed "subjective or objective improvement" after 3-6 months (Bredesen 2014).  Six of the participants who had to exit the workforce because of their condition were able to return to work after treatment. One person of the nine showing improvement never left the workforce and continued to work effectively.  Three of the ten were not working and did not seek employment. The one person who did not show improvement had severe dementia.

The diet described in this novel study sounds very close the Primal Blueprint (PB) diet from Mark Sisson of Mark's Daily Apple.  This lifestyle encourages eating similar to what our ancestors consumed prior to processed foods.  The diet includes wild-caught fish, grass-fed animals and their products, healthy fats, vegetables and fruit, a night's good sleep, and exercise. Of course, there are other popular diets that have a similar sugar-limiting feature.  I just know the most about the PB.

It's March of 2016 and there is no significant treatment for Alzheimer's or related dementias.  I encourage you to bring the article to the attention of your physician and discuss how it may help you.  My hope is that he or she encourages you, given the fact that there are little to no side effects to sleep, exercise, and a diet absent of processed foods.  The no- or low-grain part can still be controversial as well as healthy fats, but I encourage you to do your own research as I have, and choose for yourself.  After all, I am not a dietician.

This lifestyle described in Dr. Bredesen's study is challenging to follow, but I am excited to see how future studies will inform us.  It seems to me that this has the potential to reverse cognitive decline in dementia for some people, and perhaps be a key to prevention or a reduction in risk for many of us.  This has motivated me to modify my eating habits for the past 40 days. Losing excess body fat and feeling better...I'll take these as side effects.
Bredesen, D. E. (2014). Reversal of cognitive decline: A novel therapeutic program. Aging Aging, 6(9), 707-717. 

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In Peace,

Matt

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.


Sunday, February 7, 2016

Book Review: A View from Within: Living with Early Onset Alzheimer's

A Review of "A View From Within: Living with Early Onset Alzheimer's"


Author: Dr. Thaddeus M. Raushi, Ph.D.

Publisher: Northeastern New York Chapter of the Alzheimer's and Related Disorder's Association, Inc. 2001

What is it like to have probable Alzheimer's Disease? Not just what are the signs, but what is it like? How does it feel? When he wrote this powerful book, Dr. Thaddeus Raushi was in the early stages of probable Alzheimer's at age 57 (which is young for AD), as well as someone with Waldenstrom's macroglobulinemia (an incurable lymphoma cancer) since age 55. Until retiring because of his condition, Dr. Rausi was a college counselor. After retiring and at the time of writing this book, he continued to coordinate regional cancer support groups and served as a volunteer with the Alzheimer's Association.

Who will benefit from this book?  First, persons who are experiencing dementia, especially those experiencing Young Onset/Early Onset, may feel validated when reading Dr. Raushi's experiences.  Care Partners of all types will also benefit by gaining insight into what AD is like for one person.  These insights could foster understanding of a disease that is so hard to appreciate from the outside.

A View From Within is heartfelt and well-written. I imagined as though I was next to Dr. Raushi having a dialogue with him. He would share a concept or example, I would think of a follow up question, and he would answer it in the next sentence or paragraph. This made the book very easy to read.

Some of the most meaningful topics to me include:
  • Blessing of being diagnosed while he could still plan his life and care wishes
  • What conversations with others are like and the exhaustion after trying to keep up
  • What not to say when someone says they memory challenges
  • The difference of forgetting keys-like everyone does-versus probable AD
  • The unfortunate "Labeling" of AD and moving from "person to patient" ( p 62-63 )
  • The need to grieve losses in order to deal with them appropriately, rather than to deny them
  • Why he does not pray to have the disease removed
There are many more insights I could share, but the best person to do this is Dr. Raushi in his own words.

At the moment, this book is out of print and according to staff at the Northeastern New York Chapter of the Alzheimer's Association, there may be a few copies around the office. It is my intention to connect with the Chapter and encourage them to republish it in Kindle and other media. The book is worth finding used on Amazon.  If I learn of more copies and any interest in a Kindle version, I will update you.  I hope you will sign up for updates to the blog for the new developments.

Special thanks to Dr. Kathleen Rusnak, Ph.D. who brought it to my attention as I listened to the CD audiobook of her lecture "Before They Forget: Maximizing the Spiritual Possibilities of Alzheimer's" (2005 The Brick Wall 2, Inc.).

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In Peace,

Matt 

Matt Estrade, MBA, CAPS is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.



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