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It all began for me with pre-admission testing prior to scheduled thyroid surgery a few weeks ago. When my doctor was going through her list of questions at my exam, one of them was, “Do you snore?”

At that I let out a brief laugh, remembering the night before my younger granddaughter Nikki remarking to me, “Grandma, you’re snoring!” So I had to answer that, “Yes, I guess I do.” (And over the years my husband has remarked about same.)

My doctor was not smiling when she responded, “Pat, you are going to have to pass a sleep study before I can okay you for surgery.” I was told that older people with sleep problems sometimes endure complications arising from undergoing anesthesia.

I had less than a week before the surgery date and time was of the essence, so I went full speed ahead to get scheduled for the sleep study. My doctor’s staff went the extra mile on my behalf to get me in with a private sleep medicine practice the following evening.

Here is how it went. After a lengthy consultation and gathering of medical history in the afternoon, I reported at the sleep study lab that evening around 7:30, bringing with me pajamas and toiletries for the night. A pleasant nurse/tech showed me to my ‘bedroom’ and had me dress for bed. My first thought was how in the world was I going to be able to fall asleep at 10 in the evening, when my normal bedtime is not before midnight. Then and there I began to feel a bit uneasy.

The next step was being taken to an examining room where I got my first glimpse of the many electrodes that would soon be attached to my head and body via a gooey glue paste. The wires were attached to a board that would enable mobility, should I need to get to the bathroom during the night.

I was given an hour or so to ‘relax’, sitting at a desk beside my bed and thumbing through some very out-of-date magazines. Around 10 the tech reappeared, asking me if I were ready for bed. (I really felt more like running around the block a few times than hopping into bed.) But I answered, “Okay.”

I was told that the monitoring equipment was down the hall, but I could call my tech’s name at any time and she would hear me. To pass the test I was told I had to have 15 or fewer breathing lapses during sleep. And should I go over the 15, I would be immediately placed on a CPAP machine for the remainder of the night.

CPAP stands for continuous positive airway pressure. Its function is to provide a continuous mild air pressure to keep an airway open, typically used for people who have breathing problems such as sleep apnea. I was told the CPAP is the most effective treatment for obstructive sleep apnea, which I now know I have.

I had absolutely no idea I had this condition until I undertook the sleep study. However, I do remember my mother’s interrupted breathing and my tensing, waiting for her next breath.

Getting back to my sleep study experience, once the light was turned out, my room was pitch black except for the red outline of the video camera trained on my head. Even though the bed was most comfortable, sleep would not come. How does one fall asleep on command?

After a half dose of Ambien, calling for a glass of milk, and consuming a few munchies I had brought along, mercifully I did drift off around 2:30 or 3:00, I learned. When I awoke sometime around 6:00, I realized I was not wearing the CPAP mask and felt good, believing I had passed.

But around 3:00 that afternoon I learned from the sleep doctor that I had a very poor showing, averaging 45 breathing lapses per hour and a blood oxygen reading down in the lower 60s. My doctor was not going to certify me for surgery; and what more, I had not slept long enough to try out the CPAP machine. Hence, I was scheduled for a redo of the study the following week.

I went through the second night of sleep study four nights ago, using the CPAP the entire night. Again, falling asleep was a challenge. This time, however, I had an average of only 18 breathing stoppages per hour, but my oxygen level fell again to the low 60s. Yesterday I met with the sleep doctor to discuss the second study results.

I was told that wearing the CPAP did help. I will be given a CPAP machine. It will be calibrated to run on Auto — that is, the air pressure will increase automatically as my breathing need warrants. My oxygen reading will also be monitored at home for a couple of days. Should I need it, I will receive a CPAP that also delivers oxygen.

You may be wondering why I am going into such detail about the sleep study. Since all of this began, I have learned that recent research suggests that ongoing sleep deficits can take a considerable toll on the brain.

From the article “Sleep Well” by Amy Paturel, M.S., M.P.H., appearing in NEUROLOGY NOW (Feb/Mar 2014) I read that, “Recently, scientists have started to link longer waking time with increased risk of cognitive impairment and a higher risk of developing Alzheimer’s disease.”

From the same article I read that, “In a 2009 study of mice published in the journal SCIENCE, researchers found that sleep deprivation increases the concentration of harmful plaques in the brain.”

Further quoting from “Sleep Well” in NEUROLOGY NOW (Feb/Mar 2014), “For centuries scientists and philosophers have debated what our brains do during sleep. Now, for the first time, researchers have solid evidence that a good night’s sleep may literally clear the mind. In a study published in the journal SCIENCE, researchers found that the space surrounding brain cells — called the interstitial space — may increase during sleep, allowing the brain to flush out toxins that build up during waking hours. Previous research shows that proteins linked to neurodegenerative diseases, including beta-amyloid, build up in the interstitial space.”

According to Dr. Adam Spira, Ph.D., assistant professor in the department of mental health at the Johns Hopkins Bloomberg School of Public Health in Baltimore, MD, “These findings provide a potential mechanism for the link between poor quality sleep and greater cognitive impairment,” (again quoting from “Sleep Well”, NEUROLOGY NOW from Feb/Mar 2014).

Same article, quoting Dr. Rashid Deane, Ph.D., research professor in the department of neurosurgery’s Center for Translational Neuromedicine at University of Rochester Medical Center in New York, “The restorative function of sleep may be due to the switching of the brain into a state that facilitates the clearance of waste products that accumulate during wakefulness.”

Again, credit for the article, “Sleep Well” in NEUROLOGY NOW from Feb/Mar 2014 goes to Amy Paturel, M.S., M.P.H. I hope you will access this article and do further looking on the relationship between sleep deprivation and buildup of beta-amyloid.

How many of us have sleep apnea and do not realize its possible ramifications!

As most of you know, one of the big issues for our loved ones who are dealing with dementia/Alzheimer’s is a problem with balance.

Falling is a terrible hazard for people affected by dementia. My mother had numerous falls. She was living independently in her own home in rural Virginia. One particular time she fell at the edge of the driveway. She was wearing her Alert necklace at the time but could not process that she could press the button for help. She yelled as best she could until her sister down the hill could hear her.

Another time she fell taking some food scraps to the edge of her woods (yard). Calling was to no avail. She crawled to the house several yards. It goes on and on. One time I happened to be visiting her and she lost her balance within feet of me. I could not reach her in time. While visiting my brother she lost her sense of direction during the night, trying to find the bathroom, and fell, breaking her hip. That was the end of her ability to walk and the beginning of life in a nursing institution.

I would like to share with you some timely tips on preventing home accidents, which I have obtained from Dr. Mario Trucillo, Managing Editor at The American Recall Center.  Dr. Trucillo writes:

“Did you know that falls are the second-leading cause of unintentional death? Not many people do. Since June is National Safety Month, we’ve made it our mission to educate and encourage safe behavior with hopes to help prevent slips, trips, and falls. In doing so, we’ve created a graphic that outlines a few simple tips on how to prevent these type of accidents from occurring.

You can read more about it here: http://www.recallcenter.com/prevent-slips-trips-falls/

Together we can limit safety hazards and encourage healthy living among our friends and loved ones.”

The flurry of Christmas preparations and family visits just over, my husband and I made a trip to Cleveland, Ohio for overnight just after New Years 2007.  We had enjoyed a terrific concert by the Cleveland Orchestra and splurged with a lovely meal and night’s stay at Stouffers. 

The call came early next morning.  Now, my aunt rarely if ever called me and certainly not early on a Sunday morning.  Her voice was urgent and her words were serious.  “Patsy, your mom overdosed on her medicine again.  Our family can’t keep going on this way, worried about her and trying to take care of her.  She needs more than we can give.” 

I remember thinking after that call my life as I knew it was about to change.  My step up to the plate was about to begin. 

On February 1st of that year we brought my mother back with us to Ohio.  I must say I did not know what lay ahead or how we would manage.  But day by day, sometimes hour by hour, we managed.  This was in part thanks to caring support of a neurologist who specialized in gerontology and an Alzheimer’s support group that I attended each week plus respite breaks provided by my brother.

I have never mentioned much about my husband in the care-giving arena.  He was enjoying his retirement and happy with life, pursuing a hobby of ancient history.  Characteristically impatient and sometimes with a short fuse by personality, he could have been a big problem in this new threesome. 

However, he never hesitated when I broached the subject of my mom coming to stay with us.  Over time I was deeply affected by his gentleness and general good company to my mom over the year and a half that she resided with us.

We care givers, I believe, become a bit more sensitive and perhaps more empathetic to friends and family going through similar experiences.  This adjustment, sometimes very sudden, that may require more than we ever thought we could give, I am going to call “stepping up to the plate.” 

I want you to know about two families that I know, who have encountered their own challenges in this area.  The two sons in Family A are both fully employed.  One is single, having moved back home from another state to be with his mom after his father passed.  Living in the home, he has been an eye witness to the gradual changes in his mother that required more care and supervision. 

Since his mom is a good friend of mine, I have seen him stepping up to the plate, gradually modifying the way he communicated with his mom – developing his own way of heading off conflict.  His brother, who at first hedged against too much interaction, gradually came to see that his brother can’t shoulder everything alone and then stepped in for emergencies.  There were many trips to the emergency room for their mother’s chronic respiratory problems.  As time has passed, the second son (who has a family) has also stepped in to support his brother and mom.  The brothers are now a team.

The second family, I will call Family B, a mother and her three adult children.  The daughter in this family has lived with her mom all her life except for a few years.  She has gradually assumed the full care of her mom, who has been slipping into dementia over the past two years.  She has part time assistance from Home Health for her mother four days a week. 

For the daughter to assume her mother’s care has been comfortable and seamlessly normal for her brothers.  Her one brother lives a fourth mile away and will sit with his mom for a couple of hours at a time.  After a few hours, however, he starts calling his sister, asking when she plans to be home.

Her second brother lives out of state and comes once a year for a visit.  This leaves the daughter with no easy options.

What can other family members or friends do, who want to help. One option can be to step in for a few days, shooing the daughter out of the house for a much needed respite. Will her brothers step up — to be continued.

Painting Juliana

I want to share with you a newly published book written by Martha Louise Hunter as a tribute to her father who dealt with Alzheimer’s disease.  Parts of Juliana’s story, her longing to know her father better, resonated for me in my relationship to my own dad.   Here is a synopsis of the book as given in the author’s own words:

 

“Painting Juliana came out on May 20th by Goldminds Publishing out of Nashville, Tennessee.  This book is really about what the children of Alzheimer’s patients can learn that will make an impact on their own lives.

 Juliana Birdsong, the book’s main character, borrowed things from my life, primarily the open-ended yearning to have a relationship with my own father on a personal level,  who I never really knew. The ultimate “strong, silent type” and emotionally cut off, now he was suffering from Alzheimer’s disease and my chance to finally get to know him was running out, just like his memories.

 I asked him one day, “What’s happening?” I was shocked when he answered  me from another time in his memory  – over 40 years ago – as if we were lost inside a time machine.  I hoped he’d tell me about something that had made him truly happy — something scandalous maybe. That he was living a double life — it didn’t matter, just so it was something that had made him completely and truly happy. But, no – all he talked about was his work, the area of his life that had always consumed him.

So, Painting Juliana developed a fantasy, really. I wanted to inject some happiness into his past.  By doing that, maybe I could learn how to inject happiness into my future. 

The cruel disease took my father and we lost him. Not long after he died, I began writing Painting Juliana, though it didn’t have a title yet.  When I’d be anxious or confused about issues in my life, “Read the Book,” would invariably go through my head. I knew that Juliana Birdsong and I were both on a journey and that we’d be arriving at the destination together, right on time.  And I also knew that my father was guiding me somehow.

 Painting Juliana is a story about so many things. It’s the story of a woman’s spiritual journey toward self-discovery, acceptance and forgiveness. The book also represents people’s abilities to change their outcomes and recognize their creative potential, not limited to the arts, such as being a painter, cook, musician or writer. It’s about creative living. 

 Most of all, Painting Juliana is a healing book, one that I sincerely believe will help people. That is my goal.”

 

For more information on the book go to http://www.marthalouisehunter.com.

 

Readers:

 

Please note a new address for Posters As Therapy:  

 

http://www.memoriesfrommylife.com

 

My apologies for problems accessing the Posters As Therapy site.  We are working to bring the site back for creating posters.  I will let you know as soon as everything is back in shape.  Right now you may visit the site and enjoy the Homepage video, using the new web address http://www.memoriesfrommylife.com.

 

A free teleconference series offered by USAgainstAlzheimer’s Network covering a wide range of topics with leaders in the Alzheimer’s community.

 (Your author was privileged to listen to this recent teleconference.)
 

LATEST TALKS

May 2014: Important Alzheimer’s Blood Test Research

Researchers have discovered a first-of-its-kind blood test for Alzheimer’s disease that can predict – with 90 percent accuracy - if a healthy person will develop this cruel disease within three years. Dr. Howard Federoff, the Executive Vice President for Health Sciences at Georgetown University Medical Center and Executive Dean of Georgetown University School of Medicine, led the team and briefed us on why his biomarker study is a potential game-changer.

This call was made possible by the generous support of the Zickler Family Foundation. 

Highlights from our Alzheimer’s Talks with Dr. Federoff

The biomarker study led by Dr. Howard Federoff, of Georgetown University Medical Center, is a potential game-changer in our mission to find a cure. Here are a few
key points from our conversation that stuck out:

1. The blood test Dr. Federoff and his team have described predicted if a healthy person would develop Alzheimer’s or mild cognitive impairment within two to three years with more than 90 percent accuracy.

2. Several hundred healthy people ages 70 and older were recruited into the study, and researchers examined the metabolites (fats or lipid) in their blood.

3. Over the next three years, the participants’ mental health was tracked. Eighteen of the once healthy participants were diagnosed with Alzheimer’s disease or mild cognitive impairment. When the researchers compared their blood with 53 cognitively normal participants to determine what was different, they found 10 lipids that were abnormal in the group who became cognitively impaired.

4. To make sure what they found wasn’t random, the researchers looked to see if the exact same blood test would spot those who had developed Alzheimer’s disease in a separate group of 41 study participants. It did so with a 90 percent accuracy rate.

5. Researchers believe the test will allow them to identify patients who have very early disease (clinically silent) who might be appropriate for clinical studies examining medicines that could be effective when given before clinical symptoms appear.

6. While there’s still a lot of work to be done, and the test won’t be available to patients for several years, it could eventually replace more invasive and expensive testing methods, such as those involving PET scans and spinal taps. An advantage of a blood test is that it is so simple, and samples could potentially be drawn at doctors’ offices around the country.

7. Dr. Federoff and his team are planning further studies on this blood test, and he anticipates other researchers within the medical community will contribute papers on this topic over the next year.

8. Parameters are being finalized for a follow-up study with potential opportunities for volunteers. Stay tuned.

The possibility that we could treat people before symptoms appear would change everything. The key to stopping this cruel disease rests on being able to identify who’s likely to get Alzheimer’s so researchers can investigate possible treatments and prevention before it’s too late. It’s one of the most crucial missing pieces from our quest to find a cure by 2020.

See more at: http://www.usagainstalzheimersnetwork.org/alzheimers-talks#sthash.FwJ7kx5v.dpuf

You can learn more about the study by visiting the Georgetown University Medical Center’s website, which includes a video and additional background on Dr. Federoff’s research team.

 

 

- See more at: http://www.usagainstalzheimersnetwork.org/alzheimers-talks#sthash.FwJ7kx5v.dpuf

I feel compelled to share with you some appalling facts regarding how little money goes toward Alzheimer’s disease research.  While the United States spends $200 billion annually on costs related to Alzheimer’s, less than 1 percent of this actually ends up furthering the cause of studying it.

The information for this article was passed on to me from Jeff Anderson, a representative of Alzheimers.net, which is a community and informational resource for Alzheimer’s patients and their caregivers.

Read on to find out how we as caregivers can make a difference:

 

Alzheimer’s Research Spending vs. Annual Care Costs

Alzheimer’s disease affects more than 5 million Americans. It’s the fifth leading cause of death in the United States overall, and care costs for Alzheimer’s patients exceed $200 billion. But somehow the government hasn’t made research into this disease a top priority. 

Alzheimer’s Facts

In a year’s time, Alzheimer’s affects more people than cancer, heart disease and AIDS combined. As the infographic shows, only heart disease, the country’s number one cause of death, tops it in terms of annual care costs. (Heart disease costs are $264 billion; Alzheimer’s are $203 billion.)

Alzheimer’s falls not only among the top 10 causes of death in the country, but it’s the fifth leading cause of death for people aged 65 and over. In fact, one in every three seniors dies with Alzheimer’s or another form of dementia.

Over the next decade, cases of Alzheimer’s are projected to increase by 40 percent, barring a medical breakthrough. Yet the U.S. government spends less than one percent of its budget on Alzheimer’s research.

If research dollars remain unavailable, Alzheimer’s will affect nearly 14 million seniors by the year 2050, nearly triple the number of people it affects today.

Alzheimer's Research Spending VS Annual Care Cost

Alzheimer’s Compared to Other Major Diseases

Death Rates From Alzheimer’s On the Rise

Between 2000 and 2010, death rates from Alzheimer’s disease increased 68 percent, as the infographic illustrates. However, deaths from other major diseases (cancer, heart disease and AIDS) decreased during that time.

Unfortunately, Alzheimer’s is unique in that it has no cure and no way to slow its progression.

Government Costs for Alzheimer’s

Nearly 30 percent of people with Alzheimer’s and other forms of dementia are on Medicare and Medicaid, compared to 11 percent of people not suffering from these diseases. Per-person Medicare costs for Alzheimer’s and dementia patients are triple that of people without Alzheimer’s. Per-person Medicaid costs are 19 times higher.

It’s clear that research into treatment and prevention could help lower costs for the country. That’s just speaking in financial terms.

Alzheimer’s Caregiver Costs

Family caregivers often give their time for no pay. In 2012, over 15 million caregivers provided more than 17 billion hours of care for no money. Those caregiving hours were valued at $216 billion.

And caregivers often suffer ill health as a result of their caregiving duties. According to the Caregiver Action Network, stress associated with caring for a person with dementia increases a caregiver’s chances of developing a chronic illness. They don’t go to the doctor when they should, tend to have poor eating habits and exercise less than they did before becoming caregivers.

Investing More in Alzheimer’s Research

Alzheimer’s is mysterious. We don’t know what causes it, and we can’t stop it. Some suggest that if it doesn’t affect a family, the family assumes it’s not their problem.

But a recent article in USA Today explains why this isn’t true. Those high Medicare and Medicaid costs affect anyone who pays federal taxes. If that isn’t enough, the statistics indicate that this disease will soon touch a far greater number of families in the near future.

Advocacy and involvement with the Alzheimer’s Association and similar groups can help lead to achievements in research. Until members of congress make Alzheimer’s a priority, however, chances are strong that the costs to the nation will continue to soar.

Making phone calls, writing letters, visiting with congress people and sharing personal stories would be a good step toward drawing attention to the need for Alzheimer’s research funding. It won’t be easy or immediate. Nonetheless, showing politicians the personal side of Alzheimer’s can inspire them to make it a top priority.

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