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Memories of the earlier days of my mother’s illness flood my mind as I gradually approach the age when her initial memory problems began.  I think about how confidently she had conducted her life for so many years after our dad became ill and how she was able through careful management to build and furnish a family home which we all took pride in.   She had completed her bachelors degree, a few courses at a time, and was regarded an excellent elementary school fifth grade teacher for over 25 years, her favorite subjects being math and science.

With her keen intellect she was able to mask her memory difficulties for quite a while.  But eventually as bills piled up and the checkbook became more confusing, she confided in my brother that she needed his help.   And so it went, gradually over time — the loss of that independent spirit and drive to accomplish that had been an integral part of who she was.   At some point her self confidence became compromised as she suffered a broken hip and became unable to care for herself as she had in the past.

Nursing facility caregivers did not see her as a former fifth grade teacher, the wife of a former Methodist minister.  They saw her as a patient.

I had just created the first Memories from My Life photo poster for her,  which included enlarged photos with captions of her early life and the people and places that marked significant life occasions.  When I placed that poster in her room at the care facility, it was amazing how her feelings about herself changed seemingly overnight.

When her caregivers entered her room, there was meaningful conversation with our mother.  She was only too happy to identify the persons in the photos and describe the events behind them.  Those caregivers seemed to regard our mom in a much different light — she was not just the elderly patient in Room 113; she was Christine Wagner who loved life and had a family who loved her!

Over time as her dementia deepened and she lost the ability to speak, that poster remained a reminder to her of who she used to be and the people who loved her — a real comfort at any time of day or night.

Click here to visit MemoriesfromMyLife.com to create a poster for your loved one, reminding them of how they used to look and the people who continue to love them.

 

 

 

 

Reading Beyond Dementia

Marlena Books is a Canadian-based company that creates dementia-friendly books to empower persons living with Alzheimer’s and dementia to continue reading. At Marlena Books, they believe individuals with dementia should have access to age-appropriate, dignifying, adaptive recreation and to continue reading beyond dementia.

Marlena Books was inspired by founder Rachel Thompson’s grandmother, who lived with dementia and enjoyed reading throughout her life.  As her dementia progressed, Rachel noticed that her grandmother read less and less, until she no longer continued with one of her favorite hobbies. Her grandmother could read large text, such as newspaper headlines, but struggled with reading books and articles that were available to her.

This was when Rachel realized that it wasn’t that her grandmother could no longer read, but what was given to her did not meet her new needs.  So Rachel went online to purchase some dementia-friendly books for her grandmother and realized there were no available options.

After realizing such a large gap existed, Rachel decided to create dignifying, mature, short-stories for persons living with dementia to read.  Marlena Books incorporate dementia-friendly features, such as page turning prompts, Canadian National Institute for the Blind’s approved font, and a research-based layout.

marlenabooksmedia

 

While Marlena Books have been well-received, many customers have inquired about more accessibility features, such as offering books in different languages and audiobooks.  In the fall of 2018 the Marlena Books App was released, a platform that offers access to all of the Marlena Books, with numerous accessibility features that keep persons living with Alzheimer’s and dementia reading longer.  The Marlena Books App has been designed with and for persons living with dementia and their care networks.

The app offers accessibility features such as automatic page turning, personalization features, and audio reading.  To learn more about Marlena Books and to check out their products and resources, please visit www.marlenabooks.com (and yes! They do ship to the U.S.)

To download the Marlena Books app on the App Store, please visit https://itunes.apple.com/us/app/marlena-books/id1423314247?mt=8&ign-mpt=uo%3D2

 

A few weeks ago my friend Gail and I, classmates and friends from the Class of ’59, drove together down to Florida with the express purpose of visiting one of our classmates, who happens to be residing in Memory Care.  We had been considering this visit for months.

This friend was not any ordinary friend.  Over many years she had generously entertained us and others from our class at family homes in Paris and in different locations throughout the US.  I remember what a wonderful host she was, going all out to ensure we were comfortable wherever we were and making sure that we enjoyed excursions to the most interesting of places.  With these memories of happy times she had made to happen for us, we wanted to give back in a small way.

We had not been able to speak or communicate with our good friend for over a year since she entered Memory Care.  Each of us had our own fears about what to expect:  would our friend recognize us; would she be able to talk with us; would she even want to see us– and on and on.  Communication with our friend’s family had been very sparse.  For months we did not even know where she was.

But what propelled us to jump in the car for the drive to Florida was a successful talk with our friend’s daughter, who gave us the name of the Memory Care facility where she was and giving her permission for our visit.  However, we were warned that we were only to stay an hour, and that we were not under any circumstances to take her out of the facility.

So on a lovely, bright Sunday morning in early January we pulled up in front of a beautiful facility.  We had thought about what our friend might enjoy.  I remember how my friend Gail had kept beautiful scrapbooks from our school days.  And that’s what Gail packed – four large scrapbooks from schooldays in the ’50s.

I brought her a few gifts, such as a bracelet that was easily opened, and a cotton sweater in the style that I remember she might have enjoyed.

We walked in but decided to omit our arrival time on the sign-in book in case anyone might be keeping tabs.   Uneventfully, we were escorted directly to our friend’s room where a beautiful green Christmas wreath was still hanging on the door.  (Our friend by profession was an interior designer.)

After several knocks, the door opened and we were met with first a bit of puzzlement and then a wide grin and utter joy as we hugged in delight.  She always loved cats and had her two cats in her room as company.  So we were careful not to let the kitties get out.

With our friend it was just like old times, each of us talking as if we had not ever been apart.  Gifts were opened, and the bracelet was put on immediately.  The package was opened and enjoyed.

And then next, out came the first scrapbook.  It was as though time had never stopped as our friend recognized every person in every photo, remembering details that Gail and I had forgotten.  Her recall was amazing.  And that went for each book we browsed through.

Our visit did not last one hour; it lasted over four hours!  As we left to return to our hotel, our thoughts were that maybe our friend was misdiagnosed.  Maybe she had just been depressed.  We then decided the test might be whether she will remember our visit when we return tomorrow.

And that’s what we did.  Sadly, as she opened her door to greet us on the second morning, it was as though it were her first time to see us.  She did have on the bracelet I had given her.  But she wore the same clothes as the day before, and her hair could have used a wash.

We took up where we left off the previous day, but this time entered uncharted territory of the most recent stay we had enjoyed in one of her homes two years ago.  Sadly, that memory was absent.

So this begs the question:  Should one visit a relative or friend who may not remember your visit after you leave.  In our minds (my friend Gail and myself) the answer is a resounding YES.  We knew that deep down our friend remembered us and her feelings of friendship shared had never left.  We were so happy to enjoy the memories still intact and to appreciate the good moments together.

 

 

Dear Readers,

You are invited to hear four world-renowned physicians, researchers, and advocates working on this critical healthcare issue.

Information follows:

WHAT:            Webinar discussing the latest research and advances being made in the fight against Alzheimer’s and Dementia with a special emphasis on prevention.

 

WHEN:            January 7, 2019, from 10:00 – 10:50 AM (EASTERN)

 

WHO:              Four world-renowned physicians, researchers, and advocates working on this critical healthcare issue. The webinar is being hosted by Chuck Stetson, the head of the Stetson Family Foundation. The panelists include:

  • Paola Barbarino, CEO of Alzheimer’s Disease International.
  • Professor Miia Kivipelto, lead researcher in the FINGER study, from the Karolinska Institute, University of Eastern Finland, and Imperial College London.
  • Dr. Howard Fillit, Chief Science Officer of the Alzheimer’s Drug Discovery Foundation.
  • Dr. Ken Cooper dementias, Founder of the Cooper Clinic.

 

HOW: To register for the webinar, please go to www(dot)globalbetterhealth(dot)com

 

DISCUSSION TOPICS:

  • The latest research being conducted by the World Health Organization (WHO).
  • Projected findings from the continuation of the FINGER study – now being conducted in the U.S., Europe, China and Singapore.
  • The Cognitive Vitality Program, Diagnostic Accelerator, and The Cooper Institute’s 8-Point Plan.
  • The lack of discussion in the public domain about Alzheimer’s and Dementia.
  • Recommended actions to start today to significantly reduce the risk of Alzheimer’s.
  • Next steps in the battle.

 

MEDIA CONTACT:      Joe Duraes, 917-687-6419 (mobile); joeduraes@optonline.net

Air Force veteran Juan Reyes was diagnosed in the fall of 2015 with ALS, an incurable, progressive, neurodegenerative disease that can cause patients to lose their ability to walk, dress, write, speak, swallow and eat.

An estimated 5,000 to 6,000 Americans are diagnosed each year with ALS.  Veterans are twice as likely to develop ALS as people who haven’t served in the military.  It is estimated that approximately 4,220 veterans in the United States have amyotrophic lateral sclerosis with initial symptoms like muscle weakness, loss of balance, and slurred speech, which can be subtle at first; and it can take up to 12 to 14 months to be accurately diagnosed.  The majority of people with ALS die within two to five years of receiving a diagnosis, but progression of the disease can vary significantly.

For those people dealing with ALS, having a caregiver eventually becomes a necessary part of life.  Juan Reyes is married with four children in San Antonio, Texas, and he spends a great amount of time with his sister Angie, who has become his primary, in-home caregiver since his symptoms began progressing.

Juan and his sister Angie Ramirez graciously agreed to do an interview with me in November.  Although my voice is barely audible, I have uploaded the interview.  At least you will be able to hear Juan speak about his experience.

To view the interview, click here.

 

JuanReyes2 Juan ReyesJuanReyes1

 

 

 

 

When is Enough Enough?

Many of my readers have probably faced this dilemma with your loved ones — doing all you can to promote healing and as good a quality of life as possible and reaching a point where you are not sure whether what you are doing is in your loved one’s best interest.

As you may know, I have been guardian and power of attorney for my dad’s sister, Aunt Eunice, for over ten years.  (My mom took care of her needs as long as she was able.)

Aunt Eunice has been a resident in skilled nursing care for the past 27 years.  Exactly a year ago in October the facility where she had lived for 26 years closed down and she then was moved to the town near where she grew up near Falls Mills, Virginia.  The move severed the good friendship with her roommate of many years, Juanita.

Now, looking back over this troubled year, I realize that Juanita not only kept my aunt as good company but put the spark in her life to keep on living.  Juanita, 30 years my aunt’s junior, now is happily adjusted to assisted living in a new facility.

My aunt, on the other hand, never adjusted, and at age 91 has been dealing with complications from bed sores for over three months.   She remains in the hospital after a second debridement procedure.

Her diet has been next to nonexistent for a couple of months.  She was subsisting on orange sherbet when I agreed during the first debridement procedure for her to receive tube feedings, hoping the nourishment would promote healing.

She continues to refuse food.  I ask myself am I really doing her any favors.  She is legally blind and bedridden.

 

InvestAcure Headliners

MaxTokarskyimageInvestAcure Founder and CEO Max Tokarsky will make a keynote presentation at the 14th World Summit on Alzheimer’s Disease in Boston on August 31st.  InvestAcure is building a spare change investment platform to help millions of people impacted by Alzheimer’s invest in companies working on a cure.

Dr. Pierre N. Tariot, MD, Director of the Banner Alzheimer’s Institute, has joined the scientific advisory board of InvestAcure to provide guidance in both educational programming and in developing a strategic vision for advancing the development of treatment and cure for Alzheimer’s disease.

“Dr. Tariot is one of the world’s leading experts in translating cutting-edge science into treatment and cure.  Having him join our scientific team helps build a solid foundation for realizing the InvestAcure vision in the fight against this horrible disease,” said Max Tokarsky, the CEO and Founder of InvestAcure.

Dr. Tariot decided to join the InvestAcure effort because, “I have devoted my career to the care and study of people with or at risk for Alzheimer’s disease, and their families.  I witness the devastating toll that this disease takes on my patients as each one gradually loses his or her very identity and ability to function.  All the while, progress in developing promising treatments is slowed by difficulties in securing industry investment. ”

You will remember a previous article on this site introducing InvestAcure.  InvestAcure has developed an innovative plan that promises to fundamentally change that previous dynamic and help accelerate efforts to find new treatments so that yet another generation is not lost to this terrible disease.

 

About Pierre Tariot, MD

Dr. Tariot is the director of the Banner Alzheimer’s Institute in Phoenix, one of the leading Alzheimer’s research centers in the world.  Over his long career he has led efforts in investigating the diagnosis, therapy, and prevention of Alzheimer’s disease, publishing over 350 papers on these topics.  Several of these studies have led to Food & Drug Administration (FDA) approved treatments.

Together with his colleague Eric Reiman, he serves as co-director of the Alzheimer’s Prevention Initiative, an NIH-funded international program to study experimental therapies that may delay or even prevent the symptoms of Alzheimer’s in people at high imminent risk.  He is a Research Professor of Psychiatry at the University of Arizona and a Fellow of the American College of Neuropsychopharmacology.  His research affiliations include the NIA, the NIMH, and the Alzheimer’s Association.

 

About InvestAcure, PBC

InvestAcure is a Public Benefit Corporation with a vision to see a world where drug companies are owned by millions of spare change investors committed to curing Alzheimer’s.  To realize this goal, the company is building a spare change investment platform to enable those impacted by Alzheimer’s to partner in the search for a cure by rounding up day-to-day transactions and investing the spare change in clinical stage pharmaceuticals, working on promising drugs.  this would help transition investment leadership from a narrow group of profit-driven investors to a much larger and stable investor base motivated primarily by the search for a cure, leading to more clinical trials, more drugs and drug combinations tested and progress to a cure.