“ACTing on Alzheimer’s: Live Well With Hope

The Lakes Area Memory Awareness Advocates Education Forum 2014 was a great event; well implemented in a wonderful environment with excellent speakers and vendors providing beneficial information in a user friendly format! I didn’t take any pictures but if you check out the LAMAA facebook page I’m sure you’ll find some there. “Like” LAMAA! lj

Lakes Area Memory Awareness Advocates (LAMAA)

The Purple Angel Project Goes To NAPA April 29th 2pm EST

My experiences over the past few years have proven to me the most valuable effort with regard to dementia is sharing our journey and allowing others to share theirs. We have no cure. We can help each other when we share and do all we can to secure funding for more research to find the cause and a cure for these dreaded diseases that rob us of our loved ones while they are still alive.

Alzheimer's Speaks Blog

mICHAEL_ELLENBOGEN_SPEAKINGMichael Ellenbogen will be presenting to NAPA Committee (National Alzheimer’s Project Act) asking them to get behind and support the Purple Angel symbol which is the new global symbol for dementia.  No longer is it acceptable for countries, organizations or individuals to be divided on this issue.  The disease touches far too many people, both those diagnosed as well as their family, friends, co-workers and communities.

Please send emails to support the Purple Angel Project to

napa@hhs.gov

after 2 PM eastern time on the 29th of April.

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It is in the worlds best interest to join forces and use one symbol to describe and help raise awareness for the various types of dementia:  Alzheimer’s disease, Lewy Body Dementia, Frontotemporal Dementia, Vascular Dementia and all the others.

Lori La Bey Founder of Alzheimer's Speaks Lori La Bey Founder of Alzheimer’s Speaks

Lori La Bey, founder of Alzheimer’s Speaks is asking our readers to send emails…

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Upcoming Speaking Engagements

Easter is my favorite time of year, not just because it’s finally time for the snow to disappear and the green to show up but because of what it means to me spiritually. This is the most glorious time of year for Christians and also a time of great sadness as we reflect upon all that had to take place for us to be free from sin and live in His Grace, eternally. We are truly blessed.

Yet sometimes we forget the blessings as we struggle with the challenges of Alzheimer’s Disease. Our loved ones may or may not recognize us, they may be angry and confused, they may not even appear to have a real thought process going on any longer. BUT, they are our loved ones and we must always remember them as the loving, caring, vibrant, creative precious people we knew and loved before the disease that has so devastated our lives. We must treat them with the dignity and respect they deserve; keeping in mind that our good LORD treats us with His Grace, regardless of what we may deserve. He loves us and is always there for us in all circumstances and illnesses as well as in our moments of joy and success.

As I write today I’m reflecting on past speaking engagements that have resulted because of my journey with my Dad. I never imagined such heartache could be the instrument of such healing, support and the ability to help others as a tribute to the memory of my Dad.

Now I”m thinking about the two upcoming speaking engagements and praying for God to use me as an instrument of His love to share my journey for the benefit of others at these next to events. The first one is at Fairway Pines in Sauk Centre, May 1st, 2014 at 6:30 PM and it is open to the public.

Lakes Area Memory Awareness Advocacy (LAMAA) is hosting their annual educational forum May 20, 2014 and I have been invited to speak about my journey with Dad through Alzheimer’s Disease. This year the forum will be held at the Arrowwood Lodge in Baxter, MN. The theme is “ACTing on Alzheimer’s: Live Well with Hope”. Registration begins at 8:00 AM with the program beginning at 8:45 AM and ending at 3:00 PM. Registration is $15.00 and includes lunch. You can register at memoryadvocates@gmail.com or by calling Cassandra 218-822-5573.

I hope you’ll save these dates and I look forward to seeing you in either Sauk Centre or Baxter in May. In the meantime, “Live well with hope”. Lj

It’s Time To Expand Our Views On Dementia

Remembering each individual as he or she was prior to their journey with AD will go a long way toward helping family members deal with the devastation that is Alzheimer’s Disease or any dementia. Remember them while recognizing the uniqueness of their journey and yours as caregiver and/or family member and friend.

Alzheimer's Speaks Blog

It’s Time To Expand Our Views

By Lori La Bey founder of Alzheimer’s Speaks

Lori_040_1LQSoftCroppedIt is a common statement to hear someone say, “When you’ve met one person with dementia, you’ve met one person with dementia.”  I believe we need to expand this statement and also understand and accept that “Once you’ve met one care partner, you’ve met one care partner and that each and every environment we are in with a person with dementia is constantly changing.”  Nothing is a given.  We must be prepared for that.  We must develop a toolkit which can offer fluid and spontaneous tools to shift perceptions and reactions to care.  It it time to stop being limited by our fear of failure and instead switch to an attitude that we should be afraid of not trying!

My personal motto is, “It’s about progress, not perfection.”  We waste an awful lot of time, energy…

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First Post of 2014 by Michael Rafii M.D. Ph.D

Driving on an empty road towards the setting sun 2014In this first blog of 2014, I would like to review some of the highlights from the world of Alzheimer’s disease research in 2013, as well as the new directions that we will likely be heading in 2014.

Advances in Brain Imaging 

Advances in brain imaging, specifically amyloid PET scans, have led the way towards earlier identification of Alzheimer’s. Their widespread use in larger studies has made it possible to visualize the presence of beta-amyloid deposition in individuals with no symptoms.

The year began with the publication of additional data showing that amyloid deposition in the brain leads to atrophy, or shrinkage, of specific brain areas, even before patients develop memory loss. Research groups in France, Australia and the United States reported longitudinal studies of amyloid deposition in the brain, demonstrating that its presence predicts subsequent brain atrophy and cognitive decline.

Additional developments in brain imaging were made with results of Avid’s Tau tracers, both of which allow for visualization of the abnormal Tau protein that contributes to the formation of the neurofibrillary tangles of Alzheimer’s. Tau PET scans will undoubtedly become a critical tool in Alzheimer’s research during the next few years, much like amyloid imaging has been so important since the first papers were published on its use nine years ago.

Understanding Alzheimer’s in People with Down Syndrome

In the spring of 2013, the National Institutes of Health held a meeting focusing on Alzheimer’s disease among people with Down syndrome, bringing researchers together to discuss ways to develop a consortium with an aim to understand Alzheimer’s in this highly susceptible population.

– Every person with Down syndrome (DS) will develop AD pathology by age 40

– Half of the Down Syndrome population develops dementia by age 60

The Down Syndrome Biomarker Initiative (DSBI) pilot study was launched this year as a feasibility study of a planned large-scale study to discover indicators of Alzheimer’s disease in Down syndrome, with the ultimate goal of better understanding brain aging and Alzheimer’s in adults with Down syndrome.

Economic Impact of Dementia

A major publication in the New England Journal of Medicine by the RAND Corporation estimated the economic cost of dementia to the United States was approximately $203 billion in 2010. This paper garnered major attention, as it was a well conducted analysis of the economic impact of dementia. The sheer dollar amount is greater than the cost of any other disease faced by our society and is expected to rapidly increase in the next decade.

Trials and Tribulations

2013 was also the year when the long awaited results of the phase III IGIV study were presented, which were unfortunately, negative. Additionally, researchers studying the drug Bexarotene were able to replicate some, but not all of the previously reported effects of this drug on memory and beta-amyloid in mouse models of Alzheimer’s disease. Nonetheless, a placebo controlled clinical trial of Bexarotene was launched this year for the treatment of Alzheimer’s. Results are expected mid-year in 2014.

Prevention and Early Intervention

Perhaps one of the biggest events in the Alzheimer’s research world this year was the launch of the first clinical trial to prevent Alzheimer’s dementia in the general population. The trial, Anti-Amyloid in Asymptomatic Alzheimer’s Disease, or A4, is a three-year study looking at the effectiveness of a drug given to subjects who have absolutely no outward symptoms of memory loss but have positive amyloid scans of the brain. Much will be learned when this study is completed about how soon intervention can be offered in efforts to prevent Alzheimer’s disease.

G8 on Dementia

And finally, global focus on dementia was raised at this year’s G8 summit. All G8 nations made commitments to develop an international action plan for research, share information and data across the G8 countries and to provide unprecedented collaboration. The G8 plan includes open access to all publically-funded dementia research, the introduction of a new global envoy for dementia innovation, and the ambitious aim to “find a cure or disease-altering therapy by 2025.” This plan parallels the U.S. National Alzheimer’s Project Act (NAPA), with a goal of “preventing or effectively treating Alzheimer’s” by 2025.

What Is on the Horizon in 2014?

There are an unprecedented number of clinical trials now running with the aim of preventing Alzheimer’s. As data from recent studies suggest, it may only be through early intervention, before the symptomatic stage, that we can truly affect the course of AD and even consider preventing its dementia stage.

We anticipate more discoveries this upcoming year with Tau imaging, as well as the use of biomarkers in asymptomatic individuals. New data is also expected from large-scale whole-genome studies, which are revealing other Alzheimer’s susceptibility genes. We also look forward to data from some of the new mouse models created with these newly discovered mutations to understand how they contribute to the development of Alzheimer’s, and perhaps represent treatment targets.

We look forward to keeping you updated on the world of Alzheimer’s research in the upcoming year and are optimistic that there will be great developments in 2014.  Stay tuned.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Play with a Fidget Blanket/Apron

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Fidget blankets or aprons are way to keep the hands busy of those with moderate to severe Alzheimer’s disease. They feature different textures to feel and simple activities to do, such as zipping and unzipping a zipper. Some people prefer to use blankets, which feel “natural” to keep on their lap for someone with Alzheimer’s disease. Others like to use aprons because they can be worn, and tend to stay in place better than blankets, especially if the person with memory loss likes to get up and move around a lot.

You can purchase them online at stores that cater to Alzheimer’s patients or if you’re crafty, you can make your own using your imagination or as your guide. If you are of the crafty persuasion, some ideas to include are:
1. Different textured fabrics, such as velvet, faux fir, chenille, even burlap or sponges!
2. Zippers
3. Lengths of…

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Read a Book

Alzheimer's Speaks Blog

Read a Book

By: Michelle Remold

One of my favorite past times is reading. I enjoy reading anything by John Steinbeck and have two lists of books I am trying to read my way through. During my undergrad however, I discovered a new literary area that I enjoyed reading. This area was made up of personal accounts from those who had first hand experiences with Alzheimer’s and dementia.

I have read non-fiction books before, but they haven’t really been anything that sparked my interest. Within the last couple of years however, I have found that reading personal accounts of Alzheimer’s and dementia are a strong interest area for me. It provides a glimpse into someone else’s experience with the disease.

Reading personal accounts provides the opportunity to find comfort in similarities of the disease and the differences increases my compassion for those dealing with the disease while increasing  my knowledge. While…

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Lakes Area News

I’m pleased to have been interviewed will sharing our story at Ecumen Bethany Community by our Local TV station. Visit them and like them at http://lakesareanews.tv/watch-now/broadcast and watch the broadcast. My interview is about 6 minutes into the broadcast and I think Chelsea did an excellent job of condensing and relaying our story. I think you’ll find it moving.

I continue to accept speaking engagements as invited and have actually received speaker fees for most of them along with appreciation and gifts and the opportunity to sell my books as others share their journey with me. This truly has become a ministry for me and a tribute to my Dad, Mom and the many loved ones of family members suffering this devastating diagnosis. I pray we find a cure SOON! But until then, lets keep sharing with and loving one another as we remember our loved ones as they were before the disease. lj

My next speaking engagement is at the Lakes Area Memory Awareness Advocacy http://www.memoryadvocates.org/ May 20th.

Check out their 4th Annual Forum information to register to attend http://www.memoryadvocates.org/#!annual-forum

Updated Blog by Deleting Several Posts

I just went through the previous posts and deleted many that are no longer relevant.

We’ve had a wonderfully blessed and busy Christmas Season with friends and family and are now looking forward to 2014 with great anticipation. We were recently blessed with the addition of our first and second great grandchildren and await a third great grandchild in June. Very exciting times for us, the respective parents and Grandparents of these beautiful babies, one girl, one boy and one unknown as of this writing.

Over this past year, since the launch of my book, “His Name Was Merle – Our Journey through Alzheimer’s Disease, I’ve learned a lot about other people’s journeys as well as the best venue for my books to be helpful. I’m finding that “book signings” by themselves are not as beneficial as speaking engagements for specific audiences. When the two, book signings and presentations, are combined it’s a win, win. We usually have great conversations following my presentation about our journey and we sell a few books which helps greatly to cover my expenses so that I can continue to share our story and hopefully help others on a similar journey.

I’ve updated my calendar for 2014. So far we only have 2 speaking engagements but I anticipate more and will post as they are confirmed. Sometimes I’m invited to speak at support groups which I appreciate being a part of but I don’t post those on the calendar as they are specific groups and not generally open to the public.

Please feel free to contact me if your group or organization would be interested in my presentation or my participation at a round table discussion for your support group. It is my goal to do whatever I can to help Alzheimer’s Disease be better understood by family members engaged in the battle with this dreaded disease.

Looking forward to 2014 with hopes of eradicating AD I am sincerely, Lj

Too hot and too wet!

Erika, Lynda, Jeanne and Maurice who replaced Anita for one day. I didn't get a pic with Anita - I'm sorry!

Erika, Lynda, Jeanne and Maurice who replaced Anita for one day. I didn’t get a pic with Anita – I’m sorry!

This past weekend was the huge and wonderfully well attended Little Falls historic craft sale in Little Falls MN. They hosted over 600 vendors and the owner of Good Books offered a group of authors a space in front of her Christian book store. Most of us have done book signings for her/Marge at “Good Book”  but none of us had ever previously met.

In spite of the weather and a lower than normal turn out, I suspect because of the weather, the weekend was an opportunity I never anticipated. We authors now refer to ourselves as the “survivor” authors. Our books ranged from cancer survival to Holocaust survival.  We bonded immediately and shared our publication journeys as well as our survival stories….between visiting with attendees.

As I reflect on the weekend, and the awful weather, over 95 above all day on Saturday and albeit much needed, RAIN all day on Sunday, I was truly blessed to spend time with these authors and Marge. Imagine if you can, spending hours with a family and breast cancer survivor, a Holocaust survivor, and a survivor of ethnic cleansing, an under-reported historical tragedy, all of whom are women and authors willing to share their journey in the hope their survival will inspire others to fight the hard fight and never, ever give up hope and faith in God! Amazing. I have again been truly blessed because I chose to share my story in a book about our journey with my Dad and Mom.

I sincerely hope you’ll find their books and take time to read them all as soon as possible. They are:”Trapped In Hitler’s Hell” by Anita Dittman with Jan Markell; “The Will to Live” and “Silent No More” by Erica Vora and “The Chosen One by Jeanne Kremers.  They are all available at Good Books in Little Falls, MN or at their respective websites and Amazon.com along with my book of course.

As I participate in these types of events, which are not specific to an audience wanting to learn more are enduring the challenges of Alzheimer’s Disease, I am always curious about the attendees who cringe when they realize my book is about “Alzheimer’s”. I hear expressions like, “I don’t want to know about that” or ” I’m not affected by that”  or something similar. Trust me, if I had a choice I would like nothing better than to never had the need to learn about Alzheimer’s Disease much less travel the journey. Having said that, the “Journey” has brought me to places and people I never would have experienced which and whom have greatly enhanced my life.

So for those who never want to know about Alzheimer’s Disease I can only say, “Thank God you’ve never had to and I pray you never will; In the meantime, if you’re ever curious visit my website and know that I’m available to answer any questions you may have, if I can, based on my experiences”.

May God Bless you all every day. Lj