“‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia”

A family in the local support group has been struggling with their loved one’s delusions.  I suggested “white lies,” which made the family uncomfortable.  I found this 2004 article from The Wall Street Journal (wsj.com) offering three approaches for families to communicate with family members with dementia — therapeutic lying, Aikido, and validation therapy.  These approaches all “require the caregiver to give up trying to force the dementia patient to accept reality, and surrender instead to the fact that the patient is living in another mental and emotional world.”

Here’s a quick example of the three approaches.  “For instance, if Mom insists that she and her long-dead friend Mavis are going out dancing, here are some possible responses:”

* Therapeutic lying: “Mavis won’t be here until later, Mom. Let’s go to the mall for a while and take a walk.”

* Aikido: “I can see you miss having outings with your friends. I share your frustration. The senior center is offering waltz lessons. Would you like to sign up?”

* Validation Therapy: “You wish you could go out dancing again. I remember how beautifully you used to dance. What was it like to go out dancing with your friends? Isn’t that how you met Dad?”

Here’s a link to the full article:

www.wsj.com/articles/SB110012626318870633

WORK & FAMILY
‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia
By Sue Shellenbarger ([email protected]), Staff Reporter
The Wall Street Journal
Updated Nov. 11, 2004 12:01 a.m. ET

“Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Wife”

This is a nice article about a scientist who spent years studying Parkinson’s and then became a caregiver for his wife who was diagnosed in 2011 with Lewy body dementia (called “cortical Lewy body disease” in the article).  The wife, a former preacher, had been diagnosed with Parkinson’s in 2004.

This article was published on Flatland (flatlandkc.org), the digital magazine of KCPT Public Television in Kansas City, MO.  My browser did NOT like the Flatland website, which is a shame because there are some photos accompanying the article.  The article was shortened and re-published on NextAvenue (nextavenue.org).  Below, find the text of the original article and links to both websites.

Robin


www.flatlandkc.org/news-issues/cover-story/bill-priscilla-neaves/ –> my browser did NOT like this website

www.nextavenue.org/sad-irony-scientist-caregiver/ –> shorter version of article is here

Faith And Love
Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Minister Wife
By Barbara Shelly
Flatland
January 1st, 2018 at 6:00 AM

Churchgoers at a tidy, white-steepled United Methodist Church in Carrollton, Missouri, heard a frank admission from their guest pastor one spring morning in 2007.

“When asked to preach this Sunday, I almost said no,” Priscilla Wood Neaves told the congregation. “Why? Not because I lacked training and experience, and I have always enjoyed preaching.”

She had, in fact, fought for the right to preach. As a girl growing up in the 1950s in the Texas panhandle, Neaves was told that women could not be ordained ministers in the United Methodist Church. The information was erroneous, but not until she left Texas for college, marriage and motherhood did she encounter a female pastor who could disprove it.

Eventually Neaves graduated from the Perkins School of Theology at Southern Methodist University, became an ordained Methodist minister and hospital chaplain, and gathered a wealth of life experiences to frame her sermons.

And then life dealt a blow that temporarily stilled her voice.

“I was diagnosed with Parkinson’s disease three years ago,” Neaves told the congregation in Carrollton, “and I have not formally ‘proclaimed the Word’ since then. I guess it was because of feeling a mixture of fear and anger directed toward God.”

Listening in the congregation to the candid and unusual sermon was the preacher’s husband, Bill Neaves. Never entirely comfortable with church and organized religion, he kept a low profile. Few in the country church knew that, while Priscilla was wrestling with her medical diagnosis, Bill was engaged in a professional and political struggle involving the search for cures for diseases like Parkinson’s.

Childhood sweethearts from Spur, Texas, Bill and Priscilla Neaves both packed up briefcases stuffed with credentials when they moved to Kansas City in 2000.

He had been dean and executive vice president for academic affairs at the University of Texas Southwestern Medical Center in Dallas, a lauded institution where Nobel Prize winners worked with other faculty members to advance science and medicine. She was a chaplain at Children’s Medical Center Dallas — a front-line responder to small patients and their families in moments of fear, relief and overwhelming grief.

James Stowers, founder and CEO of American Century Investments, had consulted with Bill Neaves about a research facility he was creating in Kansas City. He envisioned a place in his hometown where premier scientists would have resources and time to study the causes of diseases and embark on a search for cures. Stowers asked Neaves to be the first president and CEO of the Stowers Institute for Medical Research.

“I was enthusiastic about it,” Neaves says. “Few people want to support basic science.”

But he needed to persuade Priscilla. She had balked at several other moves when opportunities had arisen. After a dinner with Stowers; his wife, Virginia; and other family members, she agreed. Neither Bill nor Priscilla Neaves had any way of knowing that during the next few years his new job would come to involve politics as much as science, and her physical and spiritual health would be put to the test.

Priscilla quickly dived into life in Kansas City by joining the board of directors of the medical ethics research and advocacy group now known as The Center for Practical Bioethics. She also joined the Institutional Review Board for Children’s Mercy Hospital.

The first signs of trouble appeared in the fall of 2003. Priscilla didn’t feel well; something was off, she said. She wasn’t able to walk with her normal stride. When the odd symptoms persisted for a few weeks, Bill tapped his medical contacts.

In January 2004, a physician at the University of Kansas Hospital diagnosed Parkinson’s disease. Another physician at Washington University Medical Center in St. Louis concurred.

As Priscilla noted in her sermon a few years later, the news came as a blow. Parkinson’s disease is a neurodegenerative disorder that hinders the brain’s ability to produce dopamine, the transmitter that enables people to regulate motor functions.

Still, the disorder progresses slowly in most people, and Priscilla was accustomed to a busy and productive life. She became a full-time volunteer chaplain at Carroll County Memorial Hospital in 2006 after the couple purchased a farm about 60 miles northeast of Kansas City. In that capacity, she provided spiritual resources and facilitated support groups for cancer and Parkinson’s patients.

Though his wife’s health was a concern, Bill Neaves was ebullient about progress at the Stowers Institute in its early years. First-rate scientists had indeed been willing to come to Kansas City, and they were engaged in rigorous and productive research.

One cloud on the horizon was legislation that kept resurfacing in the Missouri General Assembly. Pushed by Matt Bartle, a lawyer and at the time a state senator from Lee’s Summit, its stated purpose was to ban human cloning. But Bartle’s definition of cloning went far beyond a scenario in which a squawking baby might emerge from a laboratory. His bill aimed to ban even the copying of human embryos as small as a few dozen cells.

Those miniscule lab dish embryos are home to embryonic stem cells that can be formed with a patient’s DNA. Scientists believe the newly created cells can be used to repair tissue, organs and nerves damaged by all manner of injuries and diseases. In the early 2000s, they eyed the laboratory procedure with great hope.

To Bartle and others, it represented a moral threat. That’s because, once embryonic stem cells are harvested, the tiny embryo that sheltered them is destroyed. What some people viewed as a somewhat mysterious lab dish procedure, religious conservatives saw as the willful termination of human life.

The issue made it to the November 2006 ballot in the form of a constitutional amendment that would protect all scientific research in Missouri that was legal under federal law.

Jim and Virginia Stowers spent $30 million to bankroll the campaign supporting the amendment. Opponents formed their own coalition and also raised millions of dollars. Missouri citizens were besieged by television ads alternately lauding the promise of stem cell research and issuing dire, if misleading, warnings about cloning.

Bill Neaves was in the thick of it all. He wrote essays and traveled the state, speaking to groups to explain what embryonic stem cell research meant for science and the Stowers Institute. He touted its potential to stop or slow the suffering from devastating diseases. He mentioned Parkinson’s disease. What he never said publicly was that the person closest to him had been diagnosed with that illness.

The constitutional amendment passed by a razor-thin margin — a difference of 50,800 votes out of 2.1 million cast.

Ultimately, science itself stepped in to bring an uneasy truce. A Japanese researcher found a way to make adult cells behave like embryonic cells, with the same capacity to repair and rebuild damaged body parts. The reprogramming method is less costly than the somatic cell nuclear transfer procedure, and it sidesteps the ethical issues. It is now the preferred avenue for many scientists, including those at the Stowers Institute.

With his wife at his side, Bill Neaves had done his part to stand up for science. But science could not immediately return the favor. It could not stop the frightening changes that were going on in Priscilla’s body.

“For more than a quarter-century, I have retreated each summer to the Beartooth Wilderness on the Boulder River in Montana,” Priscilla Neaves wrote in July 2008. “I relax, enjoy, meditate and relate to God’s magnificent mountains and forests. Perhaps my Native American heritage encourages me to celebrate nature — my paternal grandmother was half Choctaw.”

From the deck of the wilderness home she and Bill cherished, Priscilla wrote of her love of nature, as experienced in Montana, West Texas and New England — all places she had lived. Bill would later include the meditation in a compilation of his wife’s sermons and writings. Soon after that, Priscilla’s illness made further trips impossible. “Mercifully,” Bill wrote in the afterword of the book he compiled in his wife’s honor, “we rarely realize that we are doing a beloved thing for the last time.”

The previous couple of years had been difficult. The couple lost their son, William Jr., in May of 2007. Living in Houston, he had waged a long struggle with alcoholism and died of its complications. “Priscilla was amazingly stoic about it, but I know it must have been incredibly difficult for her,” Bill says now.

She continued her work as a voluntary chaplain and frequently preached sermons in the chapel of Carroll County Memorial Hospital.

“When questions about the meaning and purpose of life hit us like a tornado, God’s grace can be most tangible,” she told her small congregation in 2009. “Job’s way can also be ours. I know. I have been there.”

By this time the Stowers Institute was thriving. Jim and Virginia Stowers had given $2 billion worth of American Century stock to its endowment. Labs were filling up with impressively credentialed scientists. A spinoff biotechnology company, BioMed Valley Technologies Inc., had been formed to move treatments and therapies into clinical development.

In June 2010, Bill Neaves announced he would retire as president and CEO of the institute. He had already begun handing off the day-to-day operations to a protege, David M. Chao.

Neaves talked about wanting more time for research and various projects. He was especially excited about returning to research he’d begun 40 years ago, studying the asexual reproduction patterns of some species of lizards. He didn’t disclose publicly that his family was dealing with an all-consuming illness.

Priscilla’s symptoms were increasingly resembling more of a dementia-type illness than traditional Parkinson’s disease. At the end of 2011, specialists at the Mayo Clinic in Rochester, Minnesota, found that Priscilla was suffering from cortical lewy body disease — a brain disorder closely related to Parkinson’s but even more devastating. The destruction proceeds beyond motor control to destroy brain neurons associated with cognitive functioning and movement.

Bill Neaves recalls that his wife absorbed the terrible news calmly. “Priscilla was still pretty much intellectually intact then, and I was very impressed with what she said,” he recalls. “The neurologist said, ‘This is what we have, and it will probably be fatal within a year and a half.’ Priscilla said, ‘Well, glad to know what I’m facing, and I know firsthand that a lot worse things have happened to people than what is happening to me.’”

The couple had moved several months earlier into an apartment in Bishop Spencer Place, a retirement facility in midtown Kansas City that has provisions for nursing care. Linda Yeager, who was chaplain there at the time, remembers that Priscilla sought her out.

“She was very anxious for me to know that she was a minister herself, and she was very interested in helping other people,” Yeager said. “She wanted to share her books, and she wanted to do research and help people. She was greatly respected and loved.”

But Priscilla’s disease was progressing rapidly. By 2012, she was experiencing anxiety, confusion and paranoia. Daily tasks such as routine teeth brushing became a struggle.

On the advice of her family physician, Priscilla moved to a Leawood facility that treats patients with dementia. She became bedridden, mostly paralyzed from the chest down, with limited use of her hands. Once a passionate voice on nearly every topic, she now spoke only intermittently.

For nearly a year, Priscilla was officially in hospice care.

Bill, who describes himself as “a compulsive-type person,” began preparing for his wife’s death. He made cremation arrangements. He visited a printer and prepared a death announcement for Priscilla. Then he focused on putting together her book, “Sermons and Meditations,” which offers an eloquent, widely sourced study of theology from the perspective of a feminist and an environmentalist.

“That was a very therapeutic thing for me,” Bill says of the book project.

And then the mysterious, maddening, wonderful creation that is the human body served up another surprise. At the end of 2013, Priscilla’s disease stopped progressing. It had run its course, a specialist told Bill. With good care, she could live for a long time. But the damage already done — the paralysis, the speech loss, the loss of memory and cognition — was likely irreversible.

These days, Bill awakens most mornings at 5 a.m. in the apartment he and Priscilla share at Bishop Spencer Place. He sets about slicing up fruits for Priscilla to eat at lunch and supper. About an hour later he escorts his wife to the skilled nursing portion of the complex and sees that she is settled at her usual breakfast table. He makes sure she drinks water.

Bill, 74, and a year older than his wife, then drives to the Stowers Institute, arriving around 6:30 a.m. A tall, rail-thin figure in blue jeans, he glides around its hallways at a clip that feels like a trot if you’re trying to keep up with him. He knows everyone by name, from top scientists to the servers in the cafe. He teaches a research course and writes papers, mostly for scientific publications. He also serves on the boards of several institutions.

Sometimes he visits the institute’s reptile facility, where he and a Stowers scientist, Peter Baumann, continue the study of unisexual lizard reproduction.

A couple of years ago, the scientific journal “Breviora” honored Neaves by lending his name to a new lizard species, aspidoscelis neavesi — Neaves’ whiptail lizard. And very recently, the “Bulletin of the Museum of Comparative Zoology,” out of Harvard University, named a different species aspidoscelis priscillae — Priscilla’s whiptail lizard. This is only appropriate. When they were much younger, Priscilla spent months collecting lizards with Bill in the deserts of New Mexico.

Bill Neaves returns to Bishop Spencer Place around 10:30 a.m. and stops in the cafe to buy Priscilla a cup of coffee. He helps her eat lunch and, again, makes sure she drinks water. Then it’s back to the Stowers Institute until about 3:30 p.m. Late afternoons and evenings are consumed by a routine of coffee, dinner, companionship and bedtime preparations.

It’s an “incredibly ritualized schedule,” Bill acknowledges. “But I read somewhere a few years ago that one of the practical bits of advice for people who are into Zen is to turn what might otherwise be routine activity into real rituals. That seems to work for Priscilla and me.”

If life had served up a different set of circumstances, Bill Neaves might be traveling the world right now, speaking at scientific conferences and soaking in the tributes due the founding president of a world-class research facility.

“I’m really glad I don’t have to do that anymore,” he tells me.

“Not that I wouldn’t rather be sitting on our deck looking over the trees at the Beartooth Wilderness in Montana with Priscilla, enjoying a glass of chardonnay, but this isn’t … isn’t bad,” Neaves says. “It’s better than I thought it would be. There’s still enough of Priscilla there to make it feel very rewarding to have the time with her.”

And what about Priscilla, the woman who broke barriers in her church, raised two children, comforted grieving families and lived with Bill in places as far-flung as Boston and Kenya?

For all of her life, she had been a reader, a writer and a thinker. As a hospital chaplain, she kept copious notes about her encounters with patients and their families.

“I was impressed by this woman’s strength,” Priscilla wrote, after an encounter with a single mother. “She did not act like a victim, although she has been victimized and suffered many hard times. She did the best she could, and that was pretty amazing.”

Now the ravages of a terrible disease have left Priscilla unable to write down her thoughts, or verbalize them. But remarks in the sermons that her husband compiled seem prescient.

“Cherish the time you have with those you love,” she counseled a group in the Carroll County Hospital Chapel. “Don’t wait for tomorrow. Don’t let the deadlines and demands of daily life delay the dreams you share.”

And this: “As we all move closer to a grave, the fleeting time we are given with each other is so precious when measured against the time of eternity. How are we using that time?”

—Barbara Shelly is a veteran journalist and writer based in Kansas City

“Life Lessons From Dad” (Wall Street Journal)

This article is about a son and his wife caring for the son’s parents in the son’s home.  The parents were in their 80s.  The father had a diagnosis of dementia.  The author says:  “Caring for an ailing parent is a life-changing event. Beyond the sadness and suffering, the experience can teach caregiving children a lot about toughness, perseverance and especially love.”

On the Wall Street Journal website (online.wsj.com), there is a 4-minute video interview of the author.  The video can be watched at no charge, after an advertisement.

Here’s a link to the full article about “life lessons from dad”:  (the full article is viewable only if you make a payment to the WSJ)

https://www.wsj.com/articles/life-lessons-from-dad-caring-for-an-elderly-parent-1403886423

Life Lessons From Dad — Caring for an ailing parent is a life-changing event; beyond the sadness and suffering, the experience can teach us a lot about toughness, perseverance and, especially, love
By Dave Shiflett
28 June 2014
The Wall Street Journal

Robin

Talk by Local Lewy Body Dementia Support Group Member on Coping

Bob Wolf is a local support group member.  His wife Carol has Lewy body dementia (LBD).  Bob wrote a wonderful, slim book called “Honey, I Sold the Red Cadillac” about his journey with LBD. He generously donated a copy to our group and it’s been circulating. You can also purchase your own copy!

Bob spoke at the Parkinson’s support group meeting in Walnut Creek last Saturday. His talk (like his book) focused on how he learned to enter Carol’s reality.

Brain Support Network volunteer Denise Dagan attended the talk and shared her notes.

Robin

————————-

Notes by Denise Dagan, Brain Support Network Volunteer

Speaker: Bob Wolf
Author of “Honey, I Sold the Red Cadillac: Learning to Cope with Lewy Body Dementia”
January 20, 2018
Parkinson’s Support Group Meeting, Walnut Creek

Bob calls himself a recovering engineer. He thinks very logically and practically, so when his wife, Carol, started hallucinating he tried to talk her out of it. His book tells their story and shares how he learned it is not possible to talk someone with dementia out of their delusions or hallucinations.

He began my explaining that both Parkinson’s and Lewy Body Dementia (LBD) are caused by the loss of dopamine in the brain, but in LBD the areas of the brain affected is more diffuse or extensive, resulting in hallucinations years earlier than someone with Parkinson’s disease may experience them.

Bob learned an interesting thing from a physical therapist (PT) who tested Carol. The PT asked Carol how many steps she thought it would take her to cross the room. She guessed 12, but it took several more. The PT explained that walking is a rather automatic action controlled by the brain in an area affected by dopamine depletion. When you have Parkinson’s disease and you walk without thinking about it you don’t walk well. When you think about it, you move control over your walking to a different part of the brain, generally not affected by dopamine loss so, if you have Parkinson’s disease, you will walk better.

Bob shared the story of when Carol’s initial symptoms presented themselves and his initial response to her hallucinations by trying to talk her out of believing her own eyes. It didn’t work. He learned he needed to work within the framework of her reality, going so far as to schedule their shower times around Carol’s belief that the local little league team was using Bob and Carol’s shower after practice.

This is the story that determined the title of his book. It was the first experience that taught Bob he needed to get into Carol’s reality. One day, looking out the window, Carol began complaining about some teenagers causing damage to Bob and Carol’s red Cadillac. To begin with, Bob and Carol don’t own a red Cadillac, and they live at Rossmoor Senior Living where there are no teenagers. He tried telling her they don’t own a Cadillac and there are no teenagers. She persisted day after day when looking out the same window that the boys were causing this or that damage to their car. One day Bob said, “Honey, I sold the red Cadillac.” She asked, “How much did you get for it?” He was a bit surprised and said, “Blue Book.” She never brought up the red Cadillac again.

Before Bob learned he had to work within Carol’s reality, he once rushed Carol to the emergency room because Carol believed her mother was ill. Bob knew Carol’s mother was deceased and wouldn’t be at the ER, but he wanted to show Carol what he said was true and Carol was mistaken. It only resulted in Carol being upset. After Bob learned to work within Carol’s reality, when Carol believed her mother was injured and at the ER, Bob went into another room and pretended to call the hospital. He told Carol her mother wasn’t badly hurt and had been sent home. He then distracted her with a pleasant activity.

After Carol had several falls Bob hired a caregiver for Tuesdays, when his bridge club met. Gradually, he added the caregiver more and more days in the week. Eventually, their daughter asked what happens to Carol if something happens to Bob, even a bad cold or the flu? He realized it was time to find Carol residential care. The family looked at several places and still picked one that didn’t serve her needs. They moved Carol to where she lives now and she’s doing very well.

Bob had a difficult time dealing with the fact that he was retired with only one job, to care for his wife, and he couldn’t do it. He saw a counselor who suggested writing down his experiences and his feelings. He did, but he realized he didn’t need a counselor for that, so he kept writing and joined a caregiver support group. At the support group he realized his stories could help others learning to care for someone with LBD, so he published his writings in “Honey, I Sold the Red Cadillac.”

Question & Answer

Q. Does Carol still know you?
A. Most of the time, although sometimes she believes Bob is her father. After all, he has white hair and makes all the decisions.

One day the activity was a travel video of Iceland. In one scene, a girl was putting on ice skates when the activity leader asked the group, “What is that girl doing?” Carol said, “Getting ready to fall down.” So, you see? Sometimes she really knows what’s going on and still has a great sense of humor.

Bob’s best advice is to remember the flight attendant’s instructions, “Put your own mask on first, then help the person next to you.” If you can’t breathe, you can’t help anyone. Take care of your own needs first, then look after your loved one.

Q. There was a comment that levodopa increases hallucinations, so stop or cut back on levodopa.
A. Bob pointed out that the anti-psychotic Carol takes makes her Parkinson’s symptoms worse, so they need one medication to help the side-effects of the other, and vice-versa.

Q. Another man asked about the commercials he’s been seeing on TV about a man with Parkinson’s having hallucinations. He wanted to know what they are selling.
A. Someone from the back of the room explained Nuplazid is the only FDA approved medication specifically designed for Parkinson’s/LBD hallucinations. This man’s wife is taking it and he says it is very expensive.

 

Axovant’s experimental drug for dementia with Lewy bodies failed in trial

Unfortunately one of the few experimental drugs being studied in dementia with Lewy bodies (DLB) has failed. The drug is known as intepirdine. The manufacturer is Axovant. Here’s a link to a short news article from this morning:

www.statnews.com/2018/01/08/alzheimers-axovant-intepirdine/

BIOTECH
A new Alzheimer’s drug, once worth billions, is headed for the trash
By Damian Garde
January 8, 2018
Statnews

Robin

 

Parkinson’s group meetings in January that may be of interest to Brain Support Network members

Happy New Year!

Some Northern and Central California Parkinson’s Disease (PD) support groups
have a guest speaker or program planned for January 2018.  I’ve listed below the meetings that may be of interest to Brain Support Network members.

In particular, I’d recommend any of the talks by Dr. Salima Brillman euphemistically referred to as “PD – more than motor symptoms.”  This refers to hallucinations and delusions.  This talk is sponsored by Acadia Pharmaceuticals, the maker of Nuplazid.  These talks may be of interest to our Lewy body dementia group members.

And I’d recommend the talk by Dr. Lin Zhang on hallucinations and delusions in Sacramento.

The talk in Fresno by Dr. Rafael Zuzuarregui on sleep and Parkinson’s would certainly have relevance to those with multiple system atrophy and Lewy body dementia.

The talk in Berkeley by Dr. Andreea Seritan on anxiety and depression in Parkinson’s will likely be worthwhile.  A fee is expected at that meeting.

Finally, our BSN member, Bob Wolf, is speaking in Walnut Creek on January 20th about his wife’s journey with Lewy body dementia.  He wrote a wonderful book called “Honey, I Sold the Red Cadillac!”

Do you need to know the support group meeting location, day/time,
contact info, and how to RSVP if required?  Please refer to the Stanford
Parkinson’s website for all Northern and Central California support groups:

http://parkinsons.stanford.edu/support_groups.html

Enjoy the rain but stay dry,
Robin

**********************

Chico
Wednesday, 1/3, 1:30-3pm
Guest Speaker:  Erica Schultheis, Butte Home Health and Hospice
RSVP?:  No.

Half Moon Bay
Friday, 1/5, 1-2pm
Guest Speaker:  Chase Montara, manager, Adult Day Healthcare Program, Half Moon Bay Senior Center
Topic:  Spirituality and health challenges
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 1/8, 1-2pm
Guest Speaker:  Jennifer Kim, OT, occupational therapist, Fountains Skilled Nursing and Physical Rehab Center
Topic:  Adaptive equipment and strategies for successful self-feeding
RSVP?:  No.

Union City/Mark Green Sports Center
Tuesday, 1/9, 2:45-4pm
Guest Speaker:  Michael Galvan, Community Resources for Independent Living (CRIL)
Topic:  Assistive devices to help with PD
RSVP?:  No.

Palo Alto Young Onset Parkinson’s
Location:  Stanford Hospital H3210 (third floor)  (Jan. meeting only)
Tuesday, 1/9, 6:30-8pm
Guest Speaker:  Joyce Liao, MD, neuro-ophthalmologist, Stanford
Topic:  Vision and reading difficulties in PD
RSVP?:  Yes, if this is your first time attending.  Please RSVSP to
Martha Gardner, group leader, at least one day in advance

Menlo Park/Little House  (New meeting location!  No longer at Avenidas
in Palo Alto.)
Wednesday, 1/10, 2-3:30pm
Guest Speaker:  Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic:  Current Parkinson’s treatments and what’s in the pipeline
RSVP?:  No.

Robin’s Note:  This is NOT focused on hallucinations and delusions but they will certainly be addressed.

Sonoma/Vintage House
Thursday, 1/11, 10-11am
Guest Speaker:  Gillian Galligan, executive neuroscience sales specialist, Acadia Pharmaceuticals
Topic:  Beyond motor symptoms – overview and new treatment option for hallucinations and delusions
RSVP?:  No.

Stockton
Thursday, 1/11, 1:30-3pm
Guest Speakers:  Kevin Chiong and Nanci Shaddy
Topic:  Delay the Disease (exercise program)
RSVP?:  No.

Redding
Friday, 1/12, 1-3:30pm
Discussion Topic:  Communication and relationships
RSVP?:  No.

Fresno
Saturday, 1/13, 10am-noon
Guest Speaker:  Rafael Zuzuarregui, MD, movement disorders specialist,
UCSF Fresno
Topic:  Parkinson’s and sleep
RSVP?:  No.

Pleasanton
Saturday, 1/13, 10am-noon
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, private practice, Menlo Park
Topic:  Parkinson’s – more than motor symptoms
RSVP?:  No.

San Jose/The Villages
Tuesday, 1/16, 10am-noon, Cribari Auditorium
Guest Presenters:  Mwezo and Jane, Kujiweza
Program: Interactive workshop on how to fall, how to get up, and fall
prevention.  Wear comfortable clothing.
RSVP?:  Yes, required if you are not a resident of The Villages. Contact
Alice Pratte, group leader, 408-223-8033, at least 24 hours in advance
to obtain community access.

Sacramento/Arden Arcade
Thursday, 1/18, 10am-noon
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC Davis
Topic:  Hallucinations and delusions connected with PD
RSVP?:  No.

Salinas
Thursday, 1/18, 1-3pm
Guest Speaker:  Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic:  PD – more than motor symptoms
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 1/20, 9am-noon  (speakers 10:45am-11:45am)
Guest Speaker #1:  Lori Santos, Rock Steady Boxing (RSB) East Bay
Topic #1:  Fighting back against PD with RSB
Guest Speaker #2:  Bob Wolf, group member and author of “Honey, I Sold the Cadillac”
Topic #2:  Bob’s journey with Lewy body dementia
RSVP?:  No.

Berkeley
Saturday, 1/20, 10:30am-noon
Guest Speaker:  Andreea Seritan, MD, geriatric psychiatrist, UCSF
Topic:  Addressing anxiety and depression in PD
RSVP?:  Yes, required to PDActive, 510-832-8029
Fee:  $10 (suggested)

Mill Valley (Marin County)
Friday, 1/26, 1-3pm (speaker is from 1-2pm)
Guest Speaker:  Sandra Shefrin, MD, movement disorder specialist, private practice, Mill Valley
RSVP?:  No.

2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.

CHALLENGE GRANT

This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

Important Research – First Genome-Wide Association Study in DLB

This is a good summary from Alzforum about research published last Friday out of two of the world’s largest brain banks — the University College London and the Mayo Clinic Jacksonville.  Researchers genotyped 1743 patients — 1324 of those patients had autopsy-confirmed dementia with Lewy bodies.  They were looking for genome-wide associations in dementia with Lewy bodies (DLB).  Basically, they were trying to answer the question — how much of DLB can be explained by genetics?

This breakthrough research was made possible through brain donation.  Our nonprofit, Brain Support Network, has helped over 450 families with brain donation.  All of those families we’ve helped where the diagnosis was confirmed DLB were involved in this important research!  Please let us know if this is interest to your family and we can help make advance arrangements.

“The researchers calculated that, overall, genetic variants account for about 36 percent of the risk for DLB in this sample. This is roughly the same as for PD, but much less than that for late-onset AD.”  Previously-known associations were confirmed — APOE, SNCA (synuclein), and GBA.  “The APOE locus emerged as the most strongly associated with DLB, with the SNCA gene for α-synuclein next. Interestingly, though, the particular SNCA SNPs were different from the ones associated with PD.”  A new loci was discovered — CNTN1.

The study was funded by two UK organizations — Alzheimer’s Society and Lewy Body Society.

Here’s a link to the Alzforum summary:

www.alzforum.org/news/research-news/first-genome-wide-association-study-dementia-lewy-bodies

First Genome-Wide Association Study of Dementia with Lewy Bodies
15 Dec 2017
Alzforum

And MedicalXpress had a good summary of the research as well.  Here’s a link to that as well:

medicalxpress.com/news/2017-12-dementia-lewy-bodies-unique-genetic.html

Dementia with Lewy bodies: Unique genetic profile identified
December 15, 2017
MedicalXpress

Robin

Coping with problem behaviors (DICE approach and a useful caregiver guide book)

The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers.  The summit was streamed live.  The summit was of most interest to those involved in research.  Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously.  It is an approach to responding to difficult behaviors.

DICE =

Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)

Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.

Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.

Evaluate – how well the plan is being followed and how it is working.  Make necessary adjustments that work for the family.

Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (dementiacarebooks.com).  (The book is to be shared within our local support group.)  Basically, this is a handbook to implementing the DICE approach.  Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors.  They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems.  One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!

Robin

 

“Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts, controversies”

Kurt Jellinger, MD, is a well-respected neuroscientist in Austria.  He recently published an overview of the latest thinking in dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).  Here’s a link to the abstract:

Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts and controversies
Kurt A. Jellinger
Journal of Neural Transmission (Vienna)
First Online: 08 December 2017

This is the key (long) sentence in the abstract:

DLB and PDD sharing genetic, neurochemical, and morphologic factors are likely to represent two subtypes of an α-synuclein-associated disease spectrum (Lewy body diseases), beginning with incidental Lewy body disease—PD-nondemented—PDD—DLB (no parkinsonism)—DLB with Alzheimer’s disease (DLB-AD) at the most severe end, although DLB does not begin with PD/PDD and does not always progress to DLB-AD, while others consider them as the same disease.

 

This is a very thorough review article that compares and contrasts DLB and PDD, looking at clinical features, diagnostic criteria, epidemiology, genetics, diagnostic biomarkers, fluid biomarkers, neuropathology, and management.

I’ve copied the full abstract below.  You’ll have to shell out some money to buy the full article, if you’d like to read more.

Robin

—————————-

Here’s the full abstract:

Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts and controversies
Kurt A. Jellinger
Journal of Neural Transmission (Vienna)
First Online: 08 December 2017

Abstract
Dementia with Lewy bodies (DLB) and Parkinson’s disease-dementia (PDD), although sharing many clinical, neurochemical and morphological features, according to DSM-5, are two entities of major neurocognitive disorders with Lewy bodies of unknown etiology. Despite considerable clinical overlap, their diagnosis is based on an arbitrary distinction between the time of onset of motor and cognitive symptoms: dementia often preceding parkinsonism in DLB and onset of cognitive impairment after onset of motor symptoms in PDD. Both are characterized morphologically by widespread cortical and subcortical α-synuclein/Lewy body plus β-amyloid and tau pathologies. Based on recent publications, including the fourth consensus report of the DLB Consortium, a critical overview is given. The clinical features of DLB and PDD include cognitive impairment, parkinsonism, visual hallucinations, and fluctuating attention. Intravitam PET and post-mortem studies revealed more pronounced cortical atrophy, elevated cortical and limbic Lewy pathologies (with APOE ε4), apart from higher prevalence of Alzheimer pathology in DLB than PDD. These changes may account for earlier onset and greater severity of cognitive defects in DLB, while multitracer PET studies showed no differences in cholinergic and dopaminergic deficits. DLB and PDD sharing genetic, neurochemical, and morphologic factors are likely to represent two subtypes of an α-synuclein-associated disease spectrum (Lewy body diseases), beginning with incidental Lewy body disease—PD-nondemented—PDD—DLB (no parkinsonism)—DLB with Alzheimer’s disease (DLB-AD) at the most severe end, although DLB does not begin with PD/PDD and does not always progress to DLB-AD, while others consider them as the same disease. Both DLB and PDD show heterogeneous pathology and neurochemistry, suggesting that they share important common underlying molecular pathogenesis with AD and other proteinopathies. Cognitive impairment is not only induced by α-synuclein-caused neurodegeneration but by multiple regional pathological scores. Recent animal models and human post-mortem studies have provided important insights into the pathophysiology of DLB/PDD showing some differences, e.g., different spreading patterns of α-synuclein pathology, but the basic pathogenic mechanisms leading to the heterogeneity between both disorders deserve further elucidation. In view of the controversies about the nosology and pathogenesis of both syndromes, there remains a pressing need to differentiate them more clearly and to understand the processes leading these synucleinopathies to cause one disorder or the other. Clinical management of both disorders includes cholinesterase inhibitors, other pharmacologic and nonpharmacologic strategies, but these have only a mild symptomatic effect. Currently, no disease-modifying therapies are available.