Thursday, July 18, 2019

Nevada joins other states in Healthy Brain Initiative Planning Lab

by News 4-Fox 11 Digital Team Reno, Nevada July 18, 2019
The Nevada Department of Health and Human Services participating in the Healthy Brain Initiative Planning Lab along with eight other states, according to the Association of State and Territorial Health Officials.
Health officials say the planning lab is designed to assist states as they develop strategies to address Alzheimer’s disease and other dementia as chronic conditions.
DHHS will be able to collaborate with other states and build a coordinated public health program that can integrate with existing programs in Nevada.
“The inclusion of Nevada in this planning lab will be a great benefit as we work to develop a statewide public health response to the Alzheimer’s epidemic. It is a chance to build partnerships with providers and those living with this disease,” said Richard Whitley, director of the Department of Health and Human Services. “I am proud of the team at DHHS for their work on this public health concern, and I offer my thanks to the Association for including Nevada in this opportunity.”
The Healthy Brain Initiative Planning Lab is a collaboration between the Association of State and Territorial Health Officials and the Alzheimer’s Association with support from the Centers for Disease Control and Prevention.

Monday, July 15, 2019

Got My Tickets for Hilarity for Charity, 2019!

Hilarity for Charity, 2014. 
Scott Kelley, Seth Rogen & Brooke Westlake-Kelley 
It's official! Hilarity for Charity  
(a nonprofit movement, lead by Seth Rogen and his lovely wife Lauren Miller Rogen) are hosting their 2019 amazing fundraisers to raise awareness, inspire change, and help accelerate the progress of Alzheimer's care, research and support through the engagement of millennials. (And the rest of us young folks) who have been affected by this awful disease that is now the newest healthcare disease epidemic.

Hilarity for Charity, 2016. 
Brooke M. Westlake-Kelley & Lauren Miller-Rogen

Want to join me and the rest of the people who will be going? Below is the link to get tickets. They are on sale now! Come on! Join the fun! You know you want to! And you know you want to go to this amazing comedy/ party because your are also going to be helping kick Alzheimer's in the %#$@!!!!…

Click here to get tickets:
Hilarity for Charity, 2016. 
Nikki & Ken Dodson with 
Brooke M. Westlake-Kelley
Date:  Saturday September 14th, 2019
Location: ROW DTLA, Los Angeles, California.
Theme: HFC County Fair
Time: 7pm to 11pm

Now, onward with planning my trip to L.A. I am super excited!!! 

Hilarity for Charity, 2015.
Miley Cryrus, performing live on stage. 
(Yes, I took a selfie. You are welcome :)


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Sunday, April 21, 2019

First National Study for Alzheimers and Brain Imaging

Alzheimer’s Diagnosis, Management Improved by Brain Scans

A first-of-its-kind national study has found that a form of brain imaging that detects Alzheimer’s-related “plaques” significantly influenced clinical management of patients with mild cognitive impairment and dementia.
The study revealed that providing clinicians with the results of positron emission tomography (PET) scans that identify amyloid plaques in the brain changed medical management – including the use of medications and counseling – in nearly two-thirds of cases, more than double what researchers predicted in advance of the study. The technique, known as “amyloid PET imaging,” also altered the diagnosis of the cause of cognitive impairment in more than one in three study participants.
The multicenter study of more than 11,000 Medicare beneficiaries, published April 2, 2019, in the Journal of the American Medical Association (JAMA), was managed by the American College of Radiology and led by scientists at the Alzheimer’s Association, UC San Francisco, Brown University School of Public Health, Virginia Commonwealth University School of Public Health, Washington University School of Medicine in St. Louis, UC Davis School of Medicine, and the Kaiser Permanente Division of Research.
Gil Rabinovici, MD, lead author and principal investigator.
“We are impressed by the magnitude of these results, which make it clear that amyloid PET imaging can have a major impact on how we diagnose and care for patients with Alzheimer’s disease and other forms of cognitive decline,” said study lead author and principal investigator Gil Rabinovici, MD, Distinguished Professor of Neurology at the UCSF Memory and Aging Center and member of the UCSF Weill Institute for Neurosciences.
“These results present highly credible, large-scale evidence that amyloid PET imaging can be a powerful tool to improve the accuracy of Alzheimer’s diagnosis and lead to better medical management, especially in difficult-to-diagnose cases,” added Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer and a co-author of the study. “It is important that amyloid PET imaging be more broadly accessible to those who need it.”
Alzheimer’s disease is characterized by the accumulation of both amyloid protein plaques and tau protein “tangles” in the brain, the presence of which are required for a definitive diagnosis. Until recently, amyloid plaques could only be detected by postmortem analysis of autopsied brain tissue. With the advent of amyloid PET – which involves injecting patients with “tracer” molecules that stick to amyloid plaques and can be used to visualize their location in the brain – it became possible to detect plaques with a brain scan and therefore more accurately diagnose people living with the disease.
Though there is no cure for Alzheimer’s disease, early diagnoses enable physicians to prescribe appropriate symptom-management therapies, counsel families on important safety and care-planning issues and direct people to clinical trials for promising new drugs. It also allows people with the disease and their families to plan for the future, including legal and financial issues, and accessing resources and support programs. PET imaging results that reveal no signs of amyloid buildup in the brain rule out Alzheimer’s disease as the cause of memory loss, which can prompt an evaluation for alternative and sometimes reversible causes, such as medication side effects, sleep or mood disorders and other medical conditions.
However, despite FDA approval of amyloid PET tracers, use of amyloid PET imaging to assist with the accurate diagnosis of the cause of someone’s dementia is currently not covered by Medicare or health insurance plans, making it unavailable to most people.
Launched in 2016, the four-year Imaging Dementia – Evidence for Amyloid Scanning (IDEAS) study was developed by a team of scientists convened by the Alzheimer’s Association to determine whether learning the results amyloid PET imaging would change medical management and health outcomes of people with memory loss and cognitive decline. IDEAS recruited nearly 1,000 dementia specialists at 595 sites in the U.S. and enrolled more than 16,000 Medicare beneficiaries with mild cognitive impairment or dementia of uncertain cause. Under their Coverage with Evidence Development policy, the Centers for Medicare & Medicaid Services (CMS) reimbursed amyloid PET scans conducted at 343 facilities and interpreted by more than 700 imaging specialists as part of this clinical study.
“This was a uniquely real-world study that looked at the impact of amyloid PET imaging in community clinics and other non-academic settings, and demonstrates for the first time how much impact this technology has in real-world dementia care,” Rabinovici said.
The newly published results from the first phase of the IDEAS study focused on how amyloid PET scans altered physician diagnosis and treatment plans for the 11,409 participants who completed the study. As the study’s primary endpoint, the scientists collected data on how physicians altered participants’ medication prescriptions and counseling about safety and future planning. As a secondary endpoint, the researchers evaluated whether PET imaging results caused physicians to alter participants’ diagnoses. Finally, several exploratory endpoints included physician decisions about referrals to Alzheimer’s clinical trials.
The newly published data reveal that physicians changed their clinical management of more than 60 percent of patients in the study, more than double the number the authors had predicted in advance.
In participants who joined the study with mild cognitive impairment and whose brain scans revealed the presence of significant amyloid deposits, clinicians were twice as likely to prescribe Alzheimer’s drugs following PET imaging (~40 percent prior to imaging vs. ~82 percent following imaging). In those with dementia and significant amyloid buildup on PET scans, prescriptions of these drugs rose from ~63 percent to ~91 percent after the study. Doctors discontinued the use of these drugs in some patients whose scans revealed little amyloid deposition. In addition, for approximately one quarter of study participants, physicians changed non-Alzheimer’s drug prescriptions and counseling recommendations based on PET imaging results.
PET scans that revealed no significant amyloid buildup led physicians to rule out Alzheimer’s disease for approximately one in three patients who had previously been given an Alzheimer’s diagnosis. On the other hand, PET scans that showed significant amyloid plaque buildup led to a new diagnosis of Alzheimer’s disease in nearly half of patients who had not previously been diagnosed with the disease.
The researchers also discovered that one-third of participants who had previously been referred to Alzheimer’s clinical trials showed no sign of amyloid buildup based on PET imaging, which generally rules out Alzheimer’s disease as the cause of their cognitive symptoms. Based on the imaging results, physicians were able to ensure that nearly all patients referred to Alzheimer’s trials were amyloid-positive (93 percent), which is critical to these trials’ success.
“Accurate diagnoses are critical to ensure patients are receiving the most appropriate treatments. In particular, Alzheimer’s medications can worsen cognitive decline in people with other brain diseases,” said Rabinovici. “But perhaps more fundamentally, people who come into the clinic with concerns about memory problems want answers. An early, definitive diagnosis may allow individuals to be part of planning for the next phase of their lives and to make decisions that otherwise would eventually need to be made by others.”
The IDEAS team is currently analyzing data on the study’s second phase, which will examine how amyloid PET scans affect health outcomes following the scan. The researchers are using CMS claims data to document hospitalization rates and Emergency Department visits for IDEAS participants, and comparing them to participants with similar neurologic problems but who did not undergo amyloid PET. They plan to publish their findings in 2020. In addition, the researchers are developing a second study (known as New IDEAS) to include more people with both typical and atypical clinical presentations of Alzheimer’s and recruit a study group that better reflects the racial and socioeconomic diversity of the national population.

Monday, March 11, 2019

Hilarity for Charity Shares Grandma Bev's Story

My husband and I have been supporters of Hilarity for Charity since 2014. This non-profit was created by actors Seth Rogen and his wife Lauren Miller-Rogen.  I love their mission statement.

"Hilarity for Charity® (HFC) is a nonprofit movement, led by Seth Rogen and Lauren Miller Rogen, dedicated to raising awareness, inspiring change, and accelerating progress in Alzheimer’s care, research, and support through the engagement of millennials."

Seth and Lauren have worked hard to raise money and bring awareness to fight this awful disease that has personally affected them both.  More recently they had sent out an email asking their followers and supporters to share their personal Alzheimer's story. I saw the post and submitted the story about my late Grandma Bev. This doesn't encompass Grandma Bev's life story.  It is the unique outcome of what transpired with Grandma Bev's illness, until her passing in 2012 from Alzheimer's.

If you get a moment, please go check out the story I shared.

Don't forget to  check out the Hilarity for Charity website!

Hilarity for Charity has several ways individual can donate to help fight Alzheimer's. Check back often to see when they will have there next annual variety show fundraiser. I cannot wait to go this year! The shows are always funny and they raise money for a great cause. To kick Alzheimer's in the ballz!

Special thanks to Hilarity for Charity and Lauren Miller-Rogen and Seth Rogen for letting my story be told.  Keep up the wonderful work that you both are doing.

Thursday, February 28, 2019

Alzheimer’s protein higher in women, may mean higher risk of symptoms

Older women with normal cognition had higher measures of tau, an Alzheimer’s-related protein, than men, a new study finds, indicating that women have a possible higher risk of developing symptoms of the serious brain disease. The NIA-supported study was published online Feb. 4, 2019, in JAMA Neurology.
Previous studies have shown that women are at greater risk for developing Alzheimer’s, and that a greater share of women than men have the disease. However, the reasons for this difference are not well understood. The new study, led by researchers at Massachusetts General Hospital, Boston, found that levels of one defining protein seen in Alzheimer’s disease—tau in the entorhinal cortex, an area of the brain involved in memory—were higher in women than in men. The findings add to growing evidence of sex differences in the biological underpinnings of Alzheimer’s.

The researchers examined positron emission tomography (PET) brain scans from two studies, the Harvard Aging Brain Study and the Alzheimer’s Disease Neuroimaging Initiative, with a total of 296 older adults, including 173 women (average age, 74). All subjects demonstrated normal cognitive function when they first received a brain scan to measure tau. They also had PET scans to measure beta-amyloid, another Alzheimer’s-related protein.
Experts believe that people with more beta-amyloid also have more tau, and that these proteins interact early in Alzheimer’s disease progression—years before memory loss and other symptoms appear. The study suggests that this interaction may be stronger in women than in men. Compared to the men’s scans, the women’s scans showed significantly higher tau deposits in the entorhinal cortex in individuals with high beta-amyloid levels. There were neither strong male-female differences in beta-amyloid levels alone nor evidence that APOE ɛ4, a genetic risk factor for Alzheimer’s, interacts with sex to influence tau.

More work is needed to gain a better understanding of sex differences in the biological processes of Alzheimer’s. Small studies such as this one are limited by recruitment procedures and survivor bias (the effects of women generally outliving men). But having similar results across two studies is intriguing and a promising direction for future research.

This research was funded in part by NIA grants PO1AG036694, RO1AG053509, P50AG005134, K23AG049087, and K24AG035007.

Monday, February 25, 2019

7 Years without You.....

Dear Grandma Bev,

You earned your angel wings 7 years ago on February 24, 2012. I held you as you left and made your way to heaven. You were an amazing woman whom I loved to laugh with and talk about my future with. Guess what? I inherited your strong independence and your fierceness for pursuing my interests. You loved to hear about what I was “doing next”. Since your departure, I have had two sons who are adorable. You would have loved to hold them and play with them as a great-grandma. I remember how you loved to take me to see your mom & dad (my great grandma and grandpa Orr). I had the pleasure to get to know them as I got older. It saddens me that you did not get the same opportunity to meet your great grandchildren. Since you departed I have been an Alzheimer’s advocate in the fight to help bring awareness. Your story is one that you shared alone on your journey before you left, but now families and friends are talking about this disease. There is no more shame, there is a story to be told by all who are living through Alzheimer's, or who caretake for a loved one with Alzheimer’s. I have traveled to Washington D.C. and spoken with senators to get bills passed so more money can be donated to for research funding to help find a cure.  I have supported my local Alzheimer's chapter for our annual fundraiser walk to end Alzheimer’s. I have supported Hilarity for Charity, which raises money as a 5013c. I have started a blog about this awful disease. I have shared your story/our story and the tragic ending that unfolded. I have cried dozens of tears over your loss. Visited your gravesite several times in Idaho. I have buried your son (my father) who died 3 years after you. I have been angry that you suffered for so long, but I have been happy that you are no longer suffering. Through your guidance on the other side of this life, I have come to terms with your loss, but think of you all the time. I have met some incredible people during my Alzheimer's advocacy journey including Seth Rogen and Lauren Miller-Rogen, Samuel L. Jackson, Maria Shriver, Senator Harry Ried & Chris Maloney. I have met other amazing family and friends that are on the same journey that I was once on before you left. Nikki and Ken Dodson & Carmine. I have won over-all Platform Awards for Woman of Achievement. for my Alzheimer's work. I have made earrings and magnets named after you called Beverly’s angels. They are purple. I sell most of them at a non-profit in Elk City, Idaho. I am currently finishing my masters degree in Criminal Justice at the University of Nevada, Reno. The new viewpoint I brought to this topic was the amount of inmates that are not diagnosed with Alzheimer's and who are more prone to Alzheimer’s. I won a preliminary 3MT speech award last year on the topic thesis topic of Alzheimer’s and Inmates. The next thing I would like to do is create an annual fundraiser in my hometown. It will take work, but I am looking forward to that being my next accomplishment for Alzheimer's advocacy. Thank you for your inspiration. Thank you for being in my life. My journey here is not complete yet. There is much more work to be done. But until we meet again, I just wanted you to know that I miss you and I love you. I hope your getting some good laughs up in heaven.

Love you Grandma Bev.

Love, Brooke

#endalz #alzheimers #grandmabev #purpledignity #purple #grandma #alzheimerssucks #kickalzintheballz #remembermyphoto

Thursday, October 25, 2018

"Where did they go?": The faces of Alzheimer's in Northern Nevada

by Kim Burrows & Photojournalist Brad Horn

According to the Centers for Disease Control (CDC), Alzheimer’s disease is an irreversible and progressive kind of dementia that affects an estimated 5.7 million Americans. Here are some startling statistics:
  • It is the sixth leading cause of death among all adults and the fifth leading cause for those aged 65 or older
  • Causes of Alzheimer’s disease and other dementias are not completely understood, but researchers believe they include a combination of genetic, environmental, and lifestyle factors
  • In more than 90% of people with Alzheimer’s, symptoms do not appear until after age 60. The incidence of the disease increases with age and doubles every 5 years beyond age 65
  • Alzheimer’s disease affects mainly older adults, and the growth in the number of older adults is unprecedented. In 2016, 49 million adults living in the United States—15% of the population—were 65 or older. By 2060, that number is expected to climb to about 98 million, or nearly one in four US residents
  • In 2017, total payments for health care, long-term care, and hospice for people with Alzheimer’s and other dementias are estimated to be $259 billion
Alzheimer's robs the brain, steals loved ones from their families, and devastates everyone it touches.
While Alzheimer's is a cruel thief, it does not always steal away life, survival -- or hope.

"It's hard to see what's happening to her."

A doctor gave Shellie Morcom the dismal diagnosis a decade ago when she was only 57 years old. He said she had Frontotemporal Dementia. They suspect she got it in her 40s. Now Shellie, former nurse practitioner, who was known for her ability to take care of others -- now relies on others to take care of her.
Shellie doesn't talk much these days but something interesting happens when Mike sings to her. She will mouth the words and even sing a few of the words. Her husband says he misses hearing her voice.
"We have fun together, we sing together. She doesn't communicate verbally, but she does with her smile and definitely through her eyes," Mike Morcom said. "It breaks my heart, I cry at night. It's hard to see what's happening to her."

Mike knows he is slowly losing his wife to dementia. He just moved her into Brookdale Senior Living, an assisted-living home, so she could get better care and he can sleep easier.
"I don't feel like I'm as stressed as I had been. It's less work for me, but the house is so lonely. It's hard. Nights are always the worst," he said.

Hitting close to home

45,000 Nevadans currently have Alzheimer's and that number is expected to grow to 64,000 by 2025. There's a good chance you probably know someone who has it or you will in your lifetime.
Most people who have dementia or Alzheimer's are typically older.
Cathy Maupin's mom Drusilla passed away at the age of 95. Her mom had the disease for 20 years and spent about a million dollars for her care.
"It's been one of the most heartbreaking things I've ever had to endure. It's broken the hearts of my children to watch their grandmother," Maupin said. "There's a lot of grieving before someone passes away. I said, 'it's death by inches.' It's literally death by inches. I have been living with her dying for a long time. "
But Maupin doesn't focus on how destructive the disease can be, instead she is able to see the brighter side of this dark diagnosis.
"You don't know how many days you really have, and that's why it's really important to live each day fully, joyously, beautifully," she said. "I live more in the moment now, I live a joyous life."

"I kind of feel like they got the wrong guy."

Dick Tatro knew something was wrong. He was doing some odd things.
"I started doing wacky things. I would go the wrong way on the golf course," he said.
A doctor gave him the bleak news: He had Posterior Cortical Atrophy, a variant and rare form of early onset Alzheimer's Disease.
"I kind of feel like they got the wrong guy."
Dick was just 52 years old.
"Anyone who hears the word Alzheimer's thinks of their 90-year-old grandmother who has Alzheimer's. That's not the case. There are many young families who are dealing with it, as well," Mona Tatro, Dick's wife, said. "Every day is a struggle but we're learning. We try to laugh as much as we can."
Dick was the key speaker at the Walk to End Alzheimer's 2015. He wanted everyone to know how tough it's been for him, his wife, and then 9-year-old son. News 4 has followed the Tatro family for the past two years and seen Dick slowly lose his words and slide into the disease.
"I'm so proud of both of them. Mona has just taken over," Dick said. "Charlie is great... I can just feel the love of that kid. He's really awesome."
Dick was unable to hold on to his job. Mona has taken on the role of caregiver and financial provider.
"He left work in October (2014) and never went back, so we lost his income. I lost my husband. I don't really have a partner anymore that helps me with running our house," she said.
Charlie, who is now 12 years old, is slowing losing his dad.
"It's been hard because instead of him taking care of me it feels like I have to take care of him. So I have to grow up really faster," Charlie said.
Physical exercise can lessen the decline in mental function and improve thinking. Dick used to hit the gym at Saint Mary's Fitness Center in Reno several times a week. He loved the social benefits. Exercise can lower the risk of developing Alzheimer's Disease.
"He's the happiest when he's here. So, even if he's done exercising, done showering he just wants to sit in the lobby and just kind of hang out and talk to people," Kellie Flynn who works at Saint Mary's Fitness Center said.
Mona had to move Dick into Stone Valley Alzheimer's Special Care Center on June 1. Unfortunately he just passed away last Saturday, October 21, almost four years to the day after being diagnosed.

Help is out there, but underutilized

Nevada has many resources for those suffering with the disease, but people often don't take advantage of them.
"Nevada is emerging as one of the leading states in terms of addressing the needs of people living with dementia in communities," Dr. Peter Reed, Director of the Sanford Center for Aging on the University of Nevada, Reno campus. "There is a vast network of care and support services around the country and even here in our community but one of the challenges is that people are not aware of those services," Dr. Reed said.
Barbara Singer's mom lived with Alzheimer's in Minnesota. The Carson City resident visited when possible and called often.
"Sometimes it changes her mood, gets her out of the anxiety or doesn't escalate so music works really well with my mom," Singer said.
Singer reached out for information and services to help her along this difficult road.
"In Carson City, there's not enough facilities, not enough care givers, not enough help," she said.
So she ended up starting a support group for caregivers like herself.
Singer's mother passed away this year at the age of 93; but her support groups continue and are more in-demand.
Northern Nevada offers many programs to care for dementia patients, but often families don't utilize them early enough. There are support groups, respite care, adult daycares, and medicines that can slow the progression of Alzheimer's. Unfortunately, most programs are geared toward older adults because that's typically who is diagnosed with the disease.
"We want to help people remain in their homes to maintain their independence and to live well with Alzheimer's disease. It doesn't have to be a tragic end-of-life diagnosis," said Niki Rubarth, the Regional Director of the Alzheimer's Association of Northern California and Northern Nevada.
At Arbors Memory Care in Sparks, they offer Moments of Memory. It's an art program that gives people with dementia an outlet to work on their cognitive skills.
"Call it a right brain-left brain activity; first, you have to be thinking about the image you want to create. And then, the other side of your brain is thinking, 'How am I going to do it? What am I going to do it with?' So, you're not thinking about being depressed or isolated or in pain," Lynette Schweigert, Director of Moments of Memory said.
Daybreak is Washoe County's licensed adult daycare program, a medically-based program supported by full-time nurses. It's licensed for 33 clients and is often full. It keeps its clients working on their cognitive skills and, at the same time, gives families respite care for the day.
We're trying to, at a minimum, maintain their level and hopefully improve their cognitive capacity level of function," Patrick Brumley, Supervisor of Daybreak said.
He says caregivers burn out, and then find Daybreak -- rather than using those services to hold off burnout.

The future of Alzheimer's in Nevada

On the medical front, there are drugs that can slow the progress of Alzheimer's. Dr. Steven L. Phillips, a geriatric doctor said finding a cure in the future may be difficult so prevention is crucial.
"Certain diseases predispose one to Alzheimer's disease. Diabetes, high blood pressure, chronic lung disease, congestive heart failure, previous strokes, obesity... So, in a high inflammatory state....our body releases certain chemicals and those chemicals have shown to affect the brain in a bad way.," Dr. Phillips said.
Research is at the highest level ever. Jacob Harmon, the former Regional Director for the Alzheimer's Association said that translate into something positive.
"The national plan is to address Alzheimer's disease indicated that a national commitment of $2 billion dollars in Alzheimer's funding would be sufficient to meet our goal of having a treatment by the year 2025 and a cure by 2050," Harmon said.
Nevada Senator Catherine Cortez-Masto, whose grandmother died of Alzheimer's, sits on the Senate Committee on Aging. She said, as a country, we need to fight for better brain health. She put together a listening group with leaders from the healthcare community in Northern Nevada. The focus was to close the gaps on Alzheimer's care.
"It includes better educational outreach, making sure everyone in the community is focused on what Alzheimer's is, that it is something that is not curable, but we can sure do a better job helping people live with it and their families live with it," Cortez-Masto said.

What happens now?

Here's an update on all four families News 4 has followed for this special.

Getting more help

The Alzheimer's Association of Northern Nevada and Northern California offers a list of help, support, services and research on its website. You can also make a donation or volunteer. It also offer a 27 hour helpline: 1-800-272-3900.