Feeds:
Posts
Comments

Wake-up Call

I had gone for some time (years) without a wellness checkup with my family physician, only making an appointment when I had a specific problem. Then six months ago I was informed that this physician was not going to be seeing general patients any longer but would be restricting her practice to skin care and plastic surgery.
That prompted my move to another practice, to a physician whose focus was more on family medicine. That meant getting caught up on a number of tests that are part of a workup, among them blood work.
I have always regarded myself as rather healthy, mostly running on good luck, and not really thinking about what constituted a healthy lifestyle. Pretty good for a 76-year-old, right?
Well, when I was recently told I was prediabetic and my kidney function left a lot to be desired, I decided I’d better get serious about paying attention to my health.
And when I then ran across a research study linking diabetes and dementia, that really scared me. My information comes from Professor Stephen Wharton through his research grant at University of Sheffield, England.
According to Professor Wharton, “Diabetes and obesity are two ticking time bombs. Understanding their contribution to dementia is of immense importance.”
The following information is taken from Professor Wharton’s article, “Investigating the Relationship Between Diabetes and Dementia.”

WHAT IS ALREADY KNOWN: Diabetes can increase the risk of developing both Alzheimer’s disease and vascular dementia. This is thought to be because the mechanisms behind diabetes development can damage small blood vessels in the brain, which is likely to contribute toward vascular dementia. It is also thought that diabetes-related blood vessel damage could lead to a reduced blood flow to the brain, which may be a factor in Alzheimer’s disease development.

According to Professor Wharton, diabetes mechanisms may also directly cause damage to brain cells. He intends to use this research project to further investigate the molecular reasons behind the apparent link between diabetes and dementia. The project will also determine whether a common condition called metabolic syndrome can influence dementia development. Metabolic syndrome encompasses a group of symptoms including obesity, high blood pressure, impaired blood glucose processing and impaired metabolic processes in cells.

The research project will look at several aspects of diabetes and metabolic syndrome and how these could link to dementia development. This includes investigating the potentially harmful effect of raised glucose levels in the body, a hallmark of diabetes. The project will also investigate the levels of other nutrients known to be altered in diabetes and determine whether this has an effect on dementia risk.

The research will also focus on the effect of the hormone insulin, which does not function correctly in diabetes. There is a growing amount of research that indicates that brain cells cannot use insulin properly in Alzheimer’s disease and this project will add to that understanding.
While diabetes is currently understood to be an important risk factor for dementia, not much is known about why this is the case. Understanding the relationship between diabetes and dementia will be important to tease apart the risks and causes that lie behind these two conditions. The study may help to define potential new mechanisms in disease development, including the role of diabetes in relation to brain cell damage.

The study has the potential to give insights into dementia prevention and to identify those at a higher risk of dementia due to diabetes-related mechanisms. This extra understanding will allow those affected to access the information that they need to manage their condition and reduce dementia risk.

WHAT ALL THIS HAS MEANT FOR ME: I am taking my prediabetic diagnosis seriously by making diet changes. Over this past weekend I met with a friend who turned his prediabetic reading around. Here are some diet suggestions he gave me:

Don’ts:
1) Avoid bread and white potatoes.
2) Desserts, alcohol, candy
3) Artificial sweeteners
4) Anything with more than 5 grams of sugar

Do’s:
1) Flatbread buns or for a sandwich use one slice of bread instead of two
2) Cereals:
a) Quaker oats
b) Grape Nuts Flakes
c) Cheerios
d) Shredded wheat
3) Veggies and fruits (except white potatoes)
4) Honey
5) Salty crackers
6) Yogurt plain or Carb Master Yogurt/Zero yogurt

AND: Walk 30 minutes a day.

Advertisements

Recommended Reads

For caregivers the luxury of personal time for reading comes at a premium. However, I want you to know about two reads I found worthy of recommending: Dancing Around the Chaos by Tracie Bevers and Finding Grace in the Face of Dementia by John Dunlop, MD.

Dancing Around the Chaos:

Since more than five million Americans are living with Alzheimer’s disease, most of us know someone whose world it has invaded. Alzheimer’s is a rough journey with many unexpected twists and turns, and it’s nothing like what most of us imagined for our future.

Dancing Around the Chaosseeks to bring the experiences surrounding Alzheimer’s out into the open so that we can learn from one another, instead of struggling to figure it out alone, dreading what the next day will bring but too exhausted and afraid to think beyond the present. This book chronicles a sweet and tender love story, a story that really happened, whose characters are real people. Passionate and deeply moving, it shares lessons learned, hope, and inspiration for others on the same long road.

When Reta was diagnosed with Alzheimer’s disease, her husband Joe became her caregiver, giving tender care to his bride of 50 years. He lived the marriage vows that so many of us recite, without imagining what they truly mean…until death do us part. He cared for her until the end of her earthly life, even as he himself began to lose the battle with the same disease. He grieved deeply for her when she was gone, continued the battle alone, not remembering or understanding many things, but never forgetting his true love. Others who witnessed this journey longed for a love like theirs…rare and precious.

To obtain a copy of Dancing Around the Chaos, go to https://traciebevers.com.

Finding Grace in the Face of Dementia by John Dunlop, MD:

Experienced geriatrician Dr. John Dunlop wants to transform the way we view dementia — showing us how God can be honored through such a tragedy as we respect the inherent dignity of all humans made in the image of God.

Sharing stories from decades of experience working with dementia patients, Dunlop provides readers, particularly caregivers, with a biblical lens through which to understand the experience and challenge of this life-altering condition. Finding Grace in the Face of Dementia will help us see the purposes of God as we love and care for those with this disease.

About John Dunlop<strong: (MD, Johns Hopkins University School of Medicine) has practiced medicine in Zion, Illinois for 37 years and currently works with the geriatrics group associated with Yale Medical School. He is board certified in geriatrics and has a masters degree in bioethics from Trinity International University, where he serves on the adjunct faculty. He is the author of Finishing Well to the Glory of God and Wellness for the Glory of God.
Go to Amazon.com to order a copy of
Finding Grace in the Face of Dementia.

Since 2015 Memories from My Life has been rated a top Alzheimer’s blog by Healthline!

Beginning with the first blog post back in 2009, my desire has been to make a difference for Alzheimer’s caregivers. During my mom’s lifetime the posts were written from personal experience. In more recent years the posts have focused more on new technology, healthcare, and research supporting Alzheimer’s treatment and advances.

Healthline.com happens to be a go-to online site for health information. I am told that over 85 million people turn to Healthline every month.

Whether you want to learn more about a health condition, research a medication, tap into one of their communities, or get some tips for a healthier lifestyle, Healthline is your answer. I have found the content informative, easy to understand, and engaging.

You’ll also find a compassionate team of professionals who genuinely care about people.

You may have read recent articles related to the long-distance caregiving of my aunt.  The uncharted waters of frustration about the care she has been receiving — and also not receiving has been very stressful, and I have not known really how to deal with it.

At a networking meeting of healthcare administrators I met Dr. Annette Ticoras, M.D., who founded Guided Patient Services – Patient Advocacy & Navigation in Columbus, Ohio. As I learned a bit about her services, I felt I had finally connected with a service that might be a resource in caring for my aunt.

Here is what GPS does:

Guided Patient Services provides patient advocacy and navigation to clients of all ages who are facing new or challenging healthcare issues.

 

We are your “Doctor in the Family”

GPS-Compass

Guided Patient Services supports you through your healthcare crisis at whatever level you need us. Whether you’re looking for full support, a one-time consult or anything in between, Guided Patient Services provides direction and understanding to confusing, time-sensitive healthcare decisions.
It’s our honor and privilege to be entrusted with the care of our patients and families. When you choose us, you can depend on us to be:

​• Your translator. We understand medical language, and we have experience with complicated diagnoses, procedures, and treatment plans. As your patient advocate, our job is to explain these concepts to you using layman’s terms, as many times as you need us to, so you can make informed decisions.

• Your coordinator. We know that arranging healthcare appointments, surgery, or hospitalizations is time consuming and overwhelming. We will help get your appointments scheduled and make sure you are prepared when the day arrives. If you are unfamiliar with where to go or where to park, we can accompany you there, making sure you are at the right place at the right time, and that all your questions are answered. We’ll stay by your side as long as you need us.​

• Your liaison. We provide coordination of care with multiple health care providers, which is especially common if you require surgery or a hospitalization. We ensure your whole health care team is on the same page and working together for your best possible outcome.

• Your representative. We attend inpatient and outpatient medical team conferences on your behalf. We listen, ask questions and relay your input to everyone involved with your care. Then we’ll explain to you what was discussed during the conference, and answer any questions you have. If you desire, we can serve as the communications contact for other family members, so everyone is up to date on your healthcare journey.

Service Disclaimer

The services provided by Guided Patient Services, Inc are currently not covered by Medicare, Medicaid or any other insurance plans. Payment for agreed upon services will be billed and provided as detailed in the Client Services Contract.

Services provided by Guided Patient Services do not include medical, financial, legal advice or recommendations. Guided Patient Services does not provide medical diagnosis or any form of medical treatment. All clients must continue under the care and supervision of their licensed healthcare providers.

 

The directory of advocates nationwide is:  http://www.advoconnection.com.

You may feel as I used to feel after each visit with my mom.   I always wanted more for her – that she be able to continue enjoying her life and that she have refreshing new experiences.  My way of achieving that was taking her out for walks in her wheelchair and excursions in the car.

But ten years ago in that day and time, few elders were comfortable using computer technology.  Thankfully times have changed!!

I am pleased to introduce the Birdsong Tablet, pre-loaded with hundreds of hours of music, videos, games, travel and even therapeutic content – all easily accessible by your loved one with one push of a button.   And here’s the source:

Built on an award-winning research study about the impact of personalized computers upon the daily life of seniors and adults with dementia, Westminster Canterbury on Chesapeake Bay in Virginia Beach, Virginia is teaming with the French-based company TMM Groupe in the launch of the Birdsong Tablet.

The Birdsong research study conducted in 2015 at Westminster-Canterbury showed that simplified in-room digital technology and curated content can improve life and brain health for older adults.  The study was conducted among residents of Westminster-Canterbury’s Hoy Nursing Care Center with Eastern Virginia Medical School and Virginia Wesleyan University.  The project received the 2016 Excellence in Research and Education Award from LeadingAge, a Washington, D.C.-based association representing 6,000 non-profit aging services organizations.

I had a question about the learning curve for seniors, especially seniors with dementia.  I was told that the Birdsong Tablet is so designed to serve all cognitive levels.  Icons in the first row on the screen are appropriate for everyone, while icons in the bottom row are more appropriate for residents with higher cognitive functioning.

BirdsongTabletphoto2

The photo attached is of Westminster-Canterbury on Chesapeake Bay in Virginia Beach, Virginia resident Ken Scott using his tablet.  This photo is courtesy of Westminster-Canterbury on Chesapeake Bay.

Along with the pre-loaded content, the device also provides a user-friendly family app that makes it easy for residents and their loved ones to connect with video chat and messaging. The tablets are available through senior living communities.  A cloud-based home version will be available in coming months. Please see below for complete details.

Contact Scott McCaskey, 757-625-2518, ext. 3 or scott@goldmanandassociates.com  for more information or to set up interviews with all parties.

 

Back when my brother and I were sharing the caregiving of our mom during years 2007 – 2011, I did not own a SmartPhone and had never texted.  Most of our communication was via live chats by cellphone.  Fast forward to 2018 and care has intensified for aunt Eunice, who is almost 91, a resident at a nursing facility in Southwest Virginia, a five-hour commute from Columbus, Ohio.

As I told you in an earlier post, our aunt had to leave the facility where she had been a resident for almost 28 years when it closed its doors.  As her guardian and POA, I made the decision to move our aunt to the town near where she grew up and where she has some family.

The move proved to be very difficult, partly because she had trouble understanding why the move was necessary and also because her vision is severely compromised due to macular degeneration.  And my assumption that she might connect with family and friends has been slow to materialize.

Her seemingly only choice for pushing back was to be combative and argumentative with her new caregivers.  That behavior caused her to become medicated to the point where she became relatively helpless, unable to lift a cup to her lips for water or feed herself.

Regrettably, I was recovering from emergency surgery when the move took place and it was weeks before I was able to go and check on her.  By that time she was sleeping much more than she was awake.  In fact the first time I visited her after her move, I had trouble waking her.

When our aunt left the original nursing facility she was feeding herself, getting dressed every day (with some assistance), and able to maneuver her wheelchair throughout the facility and communicate easily with her roommate and with other residents.

Since her arrival at the new facility in late October she has now lost approximately 50 pounds and developed a bedsore on her heel.   Our efforts at bringing attention to her needs through the nursing manager have gone unheeded.  With perseverance I found the doctor’s location and phone number, but requests for a call back went unheeded.

With the support of my daughter-in-law, who has been a nursing home administrator, the director of nurses was apprised of our aunt’s condition, and she pulled the medications that had been sapping our aunt’s energy.

Thankfully, she is now more awake and aware of her surroundings; and the best part is she is gradually getting back to enjoying the taste of a few foods she liked in the past.

And another change has been instituted:

The family has hired a sitter to come and be with our aunt for a couple of hours each day, Monday through Friday.  This sitter has proved to be an angel in some ways.  Yesterday the sitter brought her two chicken drumsticks from KFC – a favorite food from the past.  And the sitter is engaging our aunt in conversation, offering her the comfort and pleasure of personal attention.  The sitter calls each day from our aunt’s room, updating us as to our aunt’s progress.  I cannot say enough good about this lovely lady who has come into our lives.

Two other basic needs, we are continuing to wrestle with:  keeping our aunt hydrated and keeping her turned regularly.  As they say, “The squeaky wheel gets the oil!”  Every loved one in a facility needs an advocate!

 

 

A Piece of the Action

           After years of communication with my readers, there is one thing I know we have in common:   more of us fear the specter of Alzheimer’s than cancer, stroke, or any other debilitating condition combined.  And we have become frustrated, wondering if the hard shell of Alzheimer’s prevention and a cure will ever be cracked.

I would like you to know about a most amazing idea that came across my desk recently, which I am excited to share with you.  The idea happens to be a bold initiative to ensure a cure for Alzheimer’s in time and for each of us to have the opportunity to claim a small piece of its ownership.

To view a brief description of the initiative, click here.

The article, “Alzheimer’s:  The Shocking Truth About the Search for a Cure,” was authored by Max Tokarsky, Founder and CEO of InvestAcure, a Fin Tech Public Benefit Corporation startup based in Brooklyn, New York.

The entire article follows with my interest in receiving your feedback.

Alzheimer’s: The Shocking Truth About The Search for A Cure

Wall Street Math Behind Pfizer’s Decision and A Bold Initiative To Ensure A Cure In Time

by Max Tokarsky

Today at the office, we were calculating the Alzheimer’s death toll worldwide and figured out that every 38 seconds another life is claimed. With Pfizer following other Big Pharma in downsizing or closing their Alzheimer’s research divisions, it is clear that due to the high cost and unpredictable nature of clinical stage research, the investment business model for Alzheimer’s drug discovery is simply broken.

Many drugs have shown potential in restoring brain connections and memory, and leading scientists believe that Alzheimer’s can be cured. Yet, with scarce investment in clinical trials, progress has stalled and countless millions may perish as a result.

In laboratory experiments Alzheimer’s can be prevented and even reversed

In their thought-provoking article in the prominent blog, The Hill, founding members of the Global CEO Initiative on Alzheimer’s Disease; Andy Sieg and George Vradenburg write that according to a September 2014 study from Merrill Lynch and Age Wave, more Americans fear the specter of Alzheimer’s than cancer, stroke or any other debilitating condition combined. They go on to raise the alarm, that before Baby Boomers reach their 70s, generating a massive wave of new Alzheimer’s patients, we need a dramatically new approach to the way we fund research and development of new medicines and therapies for the disease. Within ten years, the government estimates that more than $2 trillion will be spent on care for those with Alzheimer’s, having a massive impact on the economy.

Dr. Hugo Geerts, who formerly headed Alzheimer’s drug discovery at Johnson & Johnson Belgium and who has now joined our Scientific Board at InvestAcure, described the situation best. ‘We can cure Alzheimer’s in our mice every week, but when it comes to clinical research where real progress needs to be made to cure people, there is simply no funding available.’

A single early-stage clinical trial can cost $10 — $30 million or more. Each trial just tests one potential component of a cure. With each trial, we learn vital lessons and come a step closer, but hundreds of trials are needed to test countless combinations and compounds. High-risk Venture Capital investment models need some degree of predictability. If you know that 9 of 10 startup companies fail, you can still make money as long as you make 20X profit on the 1 successful outcome. With the high cost and unpredictable nature of clinical stage drug discovery for a complex disease like Alzheimer’s, there is no way to create a sound mathematical model to forecast when a cure will be found or the amount of investment needed. This makes consistent Venture Capital investment impossible to sustain and has culminated in the current investment scarcity.

A comprehensive study of financial models for Alzheimer’s drug discovery, conducted by Andrew Lo, Director of the Laboratory for Financial Engineering at MIT, puts this in stark terms ‘our portfolio simulations show that the risk-adjusted return on investment of (Alzheimer’s) parallel discovery is insufficient to attract private-sector funding.’

What about charitable organizations and government funding?

The largest Alzheimer’s charity, the Alzheimer’s Association, raised about $300 million in 2016 and gave $29 million to support 159 research projects, almost all of which were pre-clinical. It goes without saying, that donors received zero equity in the research. It’s important to note that the Alzheimer’s Association does extensively benefit the public good by providing support to caregivers and advocacy, but their impact on advancing clinical stage research is rather small.

This is an inherent problem with a non-profit solution for this kind of social impact. Donors can be attracted to give with ads promising a particular impact which may legitimately be one of the missions of the non-profit. Once their donation is given, however, the non-profit can legally use those funds to support other related missions included in its charter. Donors do not own stock equity with their donation; they can’t sell their equity and get their money back. If the intended impact involves the development of a product which is eventually sold, the donors have no share in the revenue from that product, which seems both inherently unfair and builds in a lack of transparency leading to an inefficient impact model.

What about taxpayer-funded research?

In 2016, the U.S. National Institutes of Health (NIH) allocated $929 million for Alzheimer’s research. These funds were distributed in 1768 grantsaveraging a few hundred thousand dollars each and given mostly for pre-clinical research conducted by university labs. With the cost of clinical stage research in the tens of millions for a single study, this wide and shallow distribution of funds has little impact on clinical stage drug discovery and hence the process seems highly unproductive.

It is also hard to imagine that there were 1768 great ideas funded and much more probable, that as with much else in government, political motivations were involved. It goes without saying, that taxpayers had no direct say in how their money was spent, they also receive no stock equity when the government invests in private sector research.

A bold solution to end Alzheimer’s

We believe that InvestAcure’s Public Benefit Corporation model can solve this investment bottleneck by enabling the millions impacted by Alzheimer’s to power clinical stage research with affordable, automated, spare change investment.

Science relies on trial & error to make progress — with each clinical trial funded, we come one step closer to a cure!

The mechanics of the model are similar to other online investment platforms such as Stash and Acorns. InvestAcure is set up as an SEC-approved Registered Investment Advisor (RIA). Users download an app, set up an online investment account and give InvestAcure permission to purchase stock on their behalf. They then connect the credit cards they use for day-to-day transactions. Now, every time they spend money, the system automatically rounds out their transaction to the nearest dollar and deposits the spare change in their investment account. Guided by a panel of leading scientists, InvestAcure then invests those funds in companies spearheading research.

The motivation for this investment is not profit, but rather a feeling of doing one’s best to address a legitimate fear, investing a reasonable amount in a way that makes sense. Much like the motivation for buying term life insurance, you do not expect to die in the next 10 years, however, it makes sense to spend $50 a month to feel secure in the knowledge that you have done your best to protect your family in case you do. Similarly, if you know that you have a 30% chance of getting Alzheimer’s, it makes sense to spend $50 per month to have a reasonable chance for a cure.

Public Benefit Corporation model vs nonprofit

A Public Benefit Corporation is responsible to its shareholders in prioritizing a mission of a specific social good over profit. In the case of InvestAcure, our mission is finding a cure for Alzheimer’s and eventually, other deadly diseases. Unlike a charity or government taxes, the Public Benefit Corporation model is inherently fair and accountable, with each investor receiving fair equity in the outcome and putting investment to work directly in funding companies with specific trials, vetted by a world-class scientific board.

Why spare change investment?

The idea of spare change roundup investment is not new. A company called Acorns, has in a short time attracted two million users to an investment platform offering spare change investment as a way for Millennials to save a bit for retirement in a psychologically painless way.

While spare change doesn’t seem like a lot, automatically rounding up one’s transaction adds up to about $50 per month on average. 26% or 70 million Americans have a relative with Alzheimer’s. If just 1.5% become spare change investors, that’s $600 million annually, $3 billion over 5 years. That would have 30X the impact of Bill Gates’ recently publicized $100 million commitment to Alzheimer’s research. At a 15% participation rate, the number jumps to $6 billion annually or a staggering $30 billion over 5 years! That’s enough for countless clinical trials and a reasonable chance for a cure.

Just think about it, does it really make sense for millions of people to wait around to die from a horrible disease, simply because one can’t make a profit developing a cure?

Doesn’t it make more sense to invest our spare changeregardless if we make money or lose it, but so that we have a pretty decent chance for a cure in 5, 10 or 15 years?

In the words of Dr. George Perry, a world renowned Alzheimer’s scientist and editor of the Journal of Alzheimer’s Disease, who has recently joined the InvestAcure board, ‘InvestAcure has developed a formidable financial plan to end the roadblock imposed by insufficient capital to fund clinical trials necessary to discover effective cures for Alzheimer Disease. With so many major pharmaceutical companies leaving the space, it is even more imperative that we activate this approach immediately if we are to bring cures to families.’

Such encouragement is gratifying and gives us the confidence to believe that the InvestAcure solution can work. It also means that the sooner we launch and scale, the sooner new studies can get funded. The sooner a cure is found and people stop dying!

This realization is probably both the most awesome feeling of purpose any human being can hope to experience and the heaviest possible responsibility. To think that every day, every hour, every minute, if we could just work a bit harder, a bit faster, a bit smarter, another life could be saved.

It reminded us of that scene at the end of Schindler’s list, when Oskar Schindler, surrounded by the 1100 people he saved from the Nazi death camps, is given a parting gift of a ring. It’s inscribed with the words from the Talmud ‘Whoever saves a single life, saved the whole world.’ He takes a gold pen from his jacket pocket and breaks down crying realizing that with just that pen, he could have saved another life.

So, to keep ourselves accountable we decided to put up an office clock, which counts down every 38 seconds and reminds of another life lost. If our idea makes sense to you, join us and together we can stop that clock 38 seconds sooner!

Over the past six months since we quit our day jobs and began working on building InvestAcure full time; a lot has been accomplished:

  • We have built a demo of our investment platform and are about six months away from official launching of a full working model.
  • Received approval from the SEC for our plan, with InvestAcure now an official Registered Investment Adviser (RIA)!
  • Most importantly, we assembled an incredible team, which includes some of the world’s leading Alzheimer’s scientists, who believe that this solution offers the best chance for a future when Alzheimer’s will be cured.

Right now, we are working to raise our Seed round, so that we can finish building the investment platform and launch in the next six months. If you feel, like we do, that working on an idea which could save countless lives is just about the most meaningful thing one can do in life, the good news is that there is plenty of room to get involved:

  • We need as many people as possible to sign-up to download the app when it is launched, this saves precious time once the app becomes available and let’s our investors, who are helping us develop the platform, know that there is strong base of people who care! Go to http://www.investacure.com to sign up today!
  • We need volunteers to spread the word to their local community, answer questions nd galvanize support. We simply can’t do this alone. If you are a natural leader and want to help build the InvestAcure community, email us at info@investacure.com Please put the word Volunteer in the subject of your email.
  • Finally, if you have the financial means to become a Seed investor and partner in building the InvestAcure platform faster, so that more lives can be saved, please email me at mtokarasky@investacure.com and we can schedule a time to speak.

Max Tokarsky is the Founder & CEO of InvestAcure, a FinTech Public Benefit Corporation startup based in Brooklyn, New York. He can be reached at mtokarsky@investacure.