Treating depression and anxiety in Parkinson’s – webinar notes

The Michael J. Fox Foundation (michaeljfox.org) holds webinars every third Thursday. In general, these webinars focus on aspects of Parkinson’s Disease (PD) – symptoms, research, and treatment. During yesterday’s webinar time slot, a June 2016 webinar on depression and anxiety in PD was re-played.

The webinar explained the prevalence of depression and anxiety in the lives of people with PD, clarified when treatment is needed, and offered some treatment options. As depression and anxiety are common symptoms in the Brain Support Network disorders (LBD, PSP, MSA, and CBD), the webinar content applies to many in our community.

This time around, Brain Support Network volunteer Adrian Quintero listened in on the webinar, took notes, and shared them.

You can find a link to the June 2016 webinar recording here:

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=8&e=1201845

Note you have to register before watching the recording. The speakers’ slides can be downloaded once you get to the archived recording webpage.

Here are Adrian’s notes…

Robin

———————

Notes by Adrian Quintero, Brain Support Network Volunteer

Depression and Anxiety in Parkinson’s Disease
Thursday, June 16, 2016
Michael J. Fox Foundation Webinar

Panelists:
* Dave Iverson- Contributing Editor, The Michael J. Fox Foundation
* Israel Robledo- Diagnosed with Parkinson’s in 2007
* Laura Marsh, MD- Executive Director of the Mental Health Service, Michael E. DeBakey Veterans Affairs Medical Center
* Gregory Pontone, MD- Director, Parkinson’s Neuropsychiatry Clinical Programs, Johns Hopkins University School of Medicine

How common is Depression and Anxiety for people with Parkinson’s?
Dr. Marsh says it’s very common, between 50 and 60 % of people. Often people develop depressive episodes within 5-10 years of PD diagnosis (before motor symptoms are present). There are brain changes in PD that affect mood regulation, often before motor areas of the brain are affected.

How do Depression and Anxiety go hand in hand?
Dr. Pontone says experiencing both is common in PD, as it is as well in the general population. Similar neurotransmitters are at play with both depression and anxiety (serotonin, norepinephrine, dopamine).

In PD, the most common type of anxiety people experience is a more generalized / longstanding anxiety, although this can vary person to person. When depression is active, anxiety is also worsened,

Israel’s story
Israel shared from his personal experience. He dealt with depression for about 20 years off and on before he developed any motor skill symptoms. He tried different medicines that were mostly ineffective with the depression. He started to develop motor symptoms around 37, and he had an increase in depression symptoms at that time. For Israel, the depression got much worse after his PD diagnosis. For him, he experienced suicidal thoughts and feelings, and he felt depressed both cause of the PD diagnosis and as part of the PD disease itself.

He also experienced an increase in anxiety after PD diagnosis. Israel described depression as a “mental tiredness,” feeling helpless, hopeless, he didn’t feel the joy he saw other people around him experiencing.

None of the anti-depressants he had been on had a noticeable effect on his mood. His movement disorder specialist prescribed a different kind that really made a difference, and helped shift his view/ attitude. He also received a lot of support from family and friends. He said what others can most do to be helpful is to be there for the depressed person, but don’t try to fix the problem for the person.

Change in perspective
Dr. Marsh described depression as “looking at the world through mud-colored glasses.” It’s an illness that changes one’s perspective on life. There are also physical symptoms that overlap with PD symptoms, such as slowness, muscle tension, slow thinking, and fatigue. It can be hard to know if such symptoms are PD or depression. The lack of pleasure can be an important factor indicating there could be a mood disorder that needs specific addressing. Depression can have serious life threatening symptoms- hopelessness/ suicidality being the most life threatening.

What causes Anxiety and Depression in PD?
Parkinson’s impacts dopamine and other neurotransmitters. These all affect mood regulation, which is being able to experience a full range of emotions, moving in and out of different emotional states. People can become stuck in one state or another, even when trying to do things that are normally pleasurable (such as the case with Israel).

Dr. Pontone describes what is happening as chemical imbalances, and it’s not due to a lack of trying on the part of the depressed person. It can be very hard to rebound into a normal mood state. He says with depression it can be hard to think clearly, and when suicidal thoughts are present, they can take on life of their own.

The experience of depression in PD and general population is similar, except there seems to be more anxiety that accompanies the depression with PD patients. Inadequate treatment for motor symptoms an affect depression treatment in PD.

Most people feel they can cope with PD, but not when they are depressed. Effective treatment for depression makes coping with PD much easier.

If motor symptoms are worsening, it could possibly be more related to mental health issues that need attention.

Treating depression in PD through Medication
It is very important to talk to the movement disorder specialist about all the meds person is on, to have the full picture (blood pressure medications, etc.). SSRIs are usually the first type of drug to start with treatment in persons with PD. Trials of drug can be similar as it is with general population, trying one class of anti-depressant, if it’s not effective, move into another class. (Moving from SSRIs to SNRIs to tricyclic anti-depressants). The SSRI class has lower side effect risk profile to start with.

For Israel it took going to a tricyclic class of medication before he found relief.

Treating depression has been shown to correspond with improved motor function day to day. Treating anxiety can help with “freezing” symptoms.

Cognitive changes can occur in PD. Both depression and anxiety are associated with cognitive difficulties. Treating depression and anxiety and managing those well is associated in overall improved function, including cognition. (such as person may be able to think more quickly).

When to treat for depression?
Israel suggests thinking about your outlook of life. He felt mentally tired and felt like things he did didn’t really matter. If one anti-depressant doesn’t work, don’t feel shame in getting help trying an other to see if that may help. There is stigma in our society around having mental health issues, more than physical health issues.

Important to treat mental symptoms as well as we would physical symptoms. For example if we saw someone with a broken leg, we would want to rush them to the hospital for treatment. We wouldn’t see the person as being at fault and tell them to walk it off! The mindset of someone depressed changes profoundly from illness state to well state. People can recover.

Other treatment options
* Talk therapy, CBT therapy
* Education around depression
* Support (family, friends, group)
* Learning skills to manage Depression and PD
* Exercise. There are studies with the general population that show exercise can really help with depression. (There haven’t been studies with the PD population). However, Dr. Pontone believes exercise helps mood in people with PD, and will help overall disease and management of day-to-day symptoms. Exercise can also provide social interactions and can help with getting outdoors.
* Social interactions can really improve mood, having one’s experience validated by a trusted other.

Medication treatment for Anxiety
Many medications that treat depression also can be used in treating long-term anxiety and anxiety disorders. Although, some people can experience an increase of anxiety at first. Benzos- Can help anxiety in the short term, but don’t help depression. Both doctors often avoid using cause of side effects, including risk of falls. But sometimes for short-term relief they can be helpful.

Newer treatments for Anxiety and Depression
* Brain stimulation treatments- like deep brain stimulation treatment for movement symptoms. Recently, doctors have been looking into using DBS for mood improvement.
* Less invasive option is something called trans-cranial direct current stimulation; which may have both motor, and mood benefits. At Johns Hopkins they are doing a trial right now.
* Magnetic field RTMS- not invasive, magnetic coil near brain, shown to be effective in PD and gen pop.

Overall, the doctors agree there are reasons to be hopeful.

 

“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

Feb 2018 Northern and Central California Parkinson’s Group Guest Speakers

Here’s a list of guest speakers or programs at various Northern and Central California Parkinson’s support group meetings for February 2018. I’ve deleted a few items that probably aren’t of interest to the Brain Support Network community (because they are only applicable to those with PD or are focused on deep brain stimulation).

With my atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are Parkinson’s support group meetings:

  • Santa Rosa, Saturday, 2/3: UCSF psychiatrist Steven Hall, MD is speaking on non-motor aspects of Parkinson’s. I am assuming he will address depression, other mood issues, and anxiety. Perhaps he’ll address hallucinations and delusions.
  • Pacific Grove, Tuesday, 2/13: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.
  • Fremont, Monday, 2/26: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.

As always, I recommend driving no more than 30 minutes to attend any of these meetings.

You can find meeting details (meeting location, group leader contact info, RSVP process, etc.) here.

Robin

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

San Lorenzo (San Leandro)
Thursday, 2/1, 10-11:30am
Guest Speaker: Michael Galvan, Community Resources for Independent Living (CRIL)
Topic: Assistive devices to help with PD
RSVP?: No.

San Jose/Willow Glen
Friday, 2/2, 10am-noon
Guest Speaker: Jason Stewart, director of advocacy, Americans for Cures Foundation
Topic: Proposition 71 – California’s landmark stem cell program
RSVP?: No.

Visalia
Friday, 2/2, 10:30am-noon
Program: Watch and discuss “Managing Parkinson’s – Straight Talk and Honest Hope,” Parkinson’s Heartland video
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 2/3, 1-3:15pm (guest speaker 1-2pm)
Guest Speaker: Steven Hall, MD, psychiatrist, UC San Francisco
Topic: Parkinson’s – more than motor symptoms
RSVP?: No.

Lodi
Monday, 2/5, 10am-noon
Program: Break into two groups – persons with Parkinson’s and caregivers
RSVP?: No.

San Andreas (Calaveras County)
Tuesday, 2/6, 10am-noon (speaker 10:30am-noon
Guest Speaker: Kendall Gervin, OT, occupational therapist
Topics: Adaptive equipment for independence and self-care; home safety; exercise to maintain balance
RSVP?: No.

Soquel (Santa Cruz County)
Wednesday, 2/7, 1-2:30pm
Guest Speaker: Peter Lin, MD, movement disorder specialist, Valley Parkinson Clinic, Los Gatos
Topic: New developments in PD
RSVP?: No.

Millbrae/Magnolia
Thursday, 2/8, 1:30-3pm
Guest Speaker: Keith Harband, NewEnamel.com
Topic: Dealing with dry mouth
RSVP?: No.

Redding
Friday, 2/9, 1-3:30pm
Guest Speaker: Vibra Healthcare representative
Topics: Occupational therapy program; new changes coming to their Parkinson’s outpatient program
RSVP?: No.

Yuba City (Tri-Counties)
Monday, 2/12, 1-2pm
Guest Speaker: Peter Daley, III, chief, Yuba City Fire
Topics: YCFD services; disaster preparedness for the elderly and disabled
RSVP?: No.

Lakeport
Monday, 2/12, 2-3:30pm
Guest Speaker: Phil Myers, group leader
Topic: Research status
RSVP?: No.

Auburn Caregivers (those with PD can join this meeting)
Tuesday, 2/13, noon
Guest Speakers: Team of women from district attorney’s office
Topics: Aging safely – avoiding fraud, scams, and other stumbling blocks
RSVP?: No.
Note: Those with Parkinson’s are welcome at this particular meeting.

Pacific Grove (Monterey County)
Tuesday, 2/13, 3-4:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: Beyond motor symptoms in PD, including hallucinations and delusions
RSVP?: No.

Palo Alto Young Onset Parkinson’s
Tuesday, 2/13, 6:30-8pm
Guest Speaker #1: Aura Oslapas, StrivePD
Topic #1: StrivePD application
Guest Speaker #2: Ruth Gardner
Topic #2: Dental hygiene and PD
RSVP?: Yes, if this is your first time attending. Please RSVSP to Martha Gardner, group leader, at least one day in advance.
Note: Group returning to the old location at Lucile Packard Children’s Hospital

Menlo Park/Little House (New meeting location! No longer at Avenidas
in Palo Alto.)
Wednesday, 2/14, 2-3:30pm
Main Program: Please bring one tip and one gadget/equipment (if carry-able) that you recommend to people with Parkinson’s or caregivers of those with Parkinson’s
Guest Speaker: Amaris Martinez, Stanford Neurology, giving a brief overview of Stanford PD plasma study
RSVP?: No.

Merced
Thursday, 2/15, 10am-noon
Guest Speaker: Rekha Rishi-Khanna, SLP, speech therapist, Care One Home Health, Modesto
Topics: Communication and swallowing issues with PD
RSVP?: No.

Walnut Creek (Mt. Diablo)
Saturday, 2/17, 9am-noon (speakers 10:45am-11:45am)
Guest Speakers: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park, and Stephanie Fiola, BSN, nurse educator, AbbVie
Topic: Duopa – treatment for advanced Parkinson’s
RSVP?: No.

Lincoln
Tuesday, 2/20, 10-11am
Guest Speaker: Ginger McMurchie, Elder Care Management of Northern California, Granite Bay
RSVP?: No.

Modesto
Wednesday, 2/21, 1:30-3:30pm
Guest Speaker: Representative from Rock Steady Boxing, Modesto
RSVP?: No.

Mill Valley (Marin County)
Friday, 2/23, 1-3pm (speaker 1-2pm)
Guest Speaker: Aura Oslapas, StrivePD
Topic: Voice and mobile app to make life easier with PD
RSVP?: No.

Fremont
Monday, 2/26, 7-9:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: PD – more than motor symptoms
RSVP?: No.

SHARE program available to some caregivers in the Bay Area

This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.

Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.

Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers

The care receiver (person with a neurological diagnosis) must:
–  Be over age 60
–  Be living at home in the San Francisco Bay Area
–  Have intact cognitive abilities – NO dementia
–  Not be in the terminal stage of their disease

The caregiver will receive:
–  6 in-person home visits
–  Learn effective communication skills
–  Learn to reduce stress
–  Learn to promote health
–  Learn about long-term care management (make the most out of today
while planning for tomorrow)

If this is of interest, contact Michelle Venegas (415-434-3388, x323,

[email protected]) at Family Caregiver Alliance.

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.

 

Anxiety, Depression, and Apathy (in Parkinson’s) – lecture notes

Brain Support Network has another volunteer who is attending lecture, reading articles, and sharing notes. His name is Adrian Quintero. He’s also a BSN part-time employee, helping families with brain donation arrangements. (He would be happy to help your family too!)

Last Saturday, he attended a Parkinson’s support group meeting in Berkeley. The speaker was Dr. Andreea Seritan, a geriatric psychiatrist from UCSF. Her talk was about anxiety, depression, and apathy in Parkinson’s. While some of the talk was specific to Parkinson’s, most of the treatment of these two symptoms applies to those in the Brain Support Network community (Lewy body dementia, multiple system atrophy, progressive supranuclear palsy, and corticobasal degeneration).

Here are Adrian’s notes….


Notes by Adrian Quintero, Brain Support Network volunteer

Speaker: Andreea Seritan, MD, geriatric psychiatrist, UCSF Movement Disorder and Neuromodulation Center
Title of Talk: Addressing Anxiety and Depression in Parkinson’s Disease
Date: January 20, 2018, PD Active Forum

Parkinson’s Disease (PD) is a neuropsychiatric disease. Many doctors don’t realize this, and think it just affects motor skills, overlooking the psychiatric component.

Anxiety and Depression are among the most common symptoms with PD, and are important to treat as part of the disease. There is often a stigma associated with seeing a mental health provider that can make treatment of both more difficult.

Very common in people with PD. The literature on it says it’s about 40%. For Dr. Seritan’s practice it’s closer to two-thirds of the people she sees. Anxiety can present very differently person to person.

Anxiety can often precede the onset of motor symptoms.

There are physical symptoms associated with anxiety. Dr. Seritan finds people with PD are often very attuned to their bodies and are good at describing physical symptoms. Some more typical physical symptoms of anxiety include rapid heartbeat, shortness of breath, increase of tremor. More atypical symptoms, such as abdominal pain, head pressure, dizziness, may not been seen by doctors as being anxiety related.

“Wearing Off” of medication
Some people experience anxiety during the time period where there is a drop in medication between doses.
Generally happens in the late afternoon, daily, is more predictable than panic attacks that can happen out of the blue.

Generalized Anxiety Disorder
Categorized by “excessive worry” more than 6 months
Is more of a baseline of anxiety that “sits” throughout the day (vs. comes on for a period of time like wearing off)
Some of the diagnostic symptoms can be hard to distinguish from PD, such as: sleep disturbances, muscle tension, easily fatigued, hard to concentrate, restlessness

Panic Disorder
Experiencing panic attacks, which are peaks of anxiety, generally short episodes that reoccur. In between episodes there is worry about having another episode.

Social Anxiety
Performance anxiety is the part of social anxiety that Dr. Seritan sees many PD patients struggling with. Such things as giving presentations, public speaking, can be very difficult for PD patients, as there is often worry about having tremors in front of people. Especially if someone hasn’t shared their diagnosis at work, etc, there can be added stress of a fear of a visible hand tremor.

Depression
Like anxiety, depression is complicated, and experienced differently by each person affected.
In PD patients, it is less common than anxiety, literature showing about 35% of PD patients experiencing depression, and 17% diagnosed with Major Depressive Disorder.
Like anxiety, depression may precede the onset of motor symptoms associated with PD.
When untreated, depression may increase PD symptoms – worsen motor symptoms, cause cognitive deficit. Alcohol and drugs may worsen mood. With depression there is the added risk factor for suicide.

Major Depressive Episode
(5 of the 9 symptoms needed for diagnosis)
-depressed mood, lack of interest (for more than 2 weeks)
-Anhedonia – which is lack of interest in normally pleasurable activities
-Increase or decrease in sleep (again difficult because many PD patients have sleep disturbances)
-Increase or decrease in appetite/ Weight loss or gain
-Feeling guilty or worthless
-Moving slowly (symptom for general population)
-Poor concentration/ memory (people often wonder if dementia is the cause)
-Low energy
-Suicidal thoughts or behavior

Many medical conditions can affect or cause depression, such as:
Thyroid imbalances, strokes, Alzheimer’s, Parkinson’s, post heart surgery or heart attacks (especially in men), chronic pain

Some medications can affect or cause depression, such as:
Some common blood pressure meds, GERD meds, pain meds, sedatives (like Xanax), steroids (like interferon, prednisone), Anticonvulsants (which could be used for tremors)

Apathy
Different from, and less studied, than depression
-not enough energy, feeling “blah”
-20-36% of new onset PD patients
-40-45% overall patients with PD
-lack of drive

Having a schedule and events where others can help hold someone accountable can help (such as Rock Steady Boxing classes, etc.)

Treatment Approaches for Anxiety and Depression
Dr. Seritan likes to start off with the non-pharmaceutical treatments first, which can include:
-exercise (such as Rock Steady Boxing, Dance for PD)
-diet
-good sleep hygiene
-minimize alcohol and drugs (including marijuana). Alcohol can aggravate depression, as well as affect balance, and disturb the sleep/wake cycle.

Other non-pharmaceutical treatments may include:

Gratitude practice
-practicing 3 weeks of journaling where every night you count 5-10 things that you’re grateful for. There is a book called “Thanks” that talks about this practice.
-Such practices have shown to increase sleep and energy, lower depression, and have no side effects!

Self-Efficacy
-Believing in the ability to accomplish goals. People often lose this feeling when they are diagnosed with PD. They may also experience a loss of identity, family role, loss of income, etc.
-Re-adjust goals- Look to strategies that have worked in previous moments of crisis, those strategies will work again
-How we see ourselves is important. Sometimes we may need the help of a mental health professional to act as a mirror.

Psychotherapy
-CBT (Cognitive Behavioral Therapy)- the most well-studied therapy for anxiety and depression.
-MBI (Mindfulness Based Interventions)- paying attention to the present moment non-judgementally. There is increasing studies and evidence as to the effectiveness of such interventions. Can help memory, executive functioning and cognitive functioning.
-MBSR (Mindfulness Based Stress Reduction)- often used in medical settings, there are groups oriented around learning this
-MBCT (Mindfulness Based Cognitive Therapy)- Combination of CBT and MBSR, used at UCSF.

Treatment with Medications
In general, timing of when medications are taken is important.

-Wearing-off Issue- Dr. Seritan suggests working with doctor to adjust timing and dose of medication. If experiencing several times a day, treatment of base anxiety may be needed.
-For PD patients who had anxiety and depression before PD diagnosis, SSRIs and SNRIs can be helpful for treatment.

Benzos
-used for anxiety attacks/ peaks, can help with wearing off anxiety, also used at times for restless legs
-NOT good for Generalized Anxiety Disorder, and shouldn’t be used for insomnia
-Recommends NOT taking daily, as risk for dependence
-Look at risk/benefit analysis of using
-don’t mix with alcohol or sleep-aids
-Xanax has a short half-life and can cause rebound effects. Dr. Seritan prefers medications with a longer half-life
-Some benzos can cause memory problems, and increase risk of fall
-Some can be sedating and are best taken at nighttime

Sleep-Aids
-Sleep disturbance is a major symptom of anxiety, depression, and PD
-Trazadone- may cause grogginess
-Ambien- there is a dose differential for men and women
-Melatonin- natural aide, Dr. Seritan suggests taking 2 hours prior to bedtime. It can be combined with Ambien
-Gabapentin- good for anxiety, sleep, and pain. Have to modify dose so as not to cause sleeping during the day

Social/Performance Anxiety
-Beta blockers can be good used PRN. There are possible side effects of increased depression and fatigue

Apathy treatment
“Activating” antidepressants such as: Buproprion, Duloxetine, Venlafaxine
-Stimulants- Does NOT recommend Ritalin, etc. Instead Dr. Seratin treats with Modafinil or Armodafinil

Deep Brain Stimulation
-DBS is approved for PD to improve motor symptoms. There are surgery risks involved, as well as psychiatric risks. It can increase anxiety and depression, as well as impulsivity. It may decrease anxiety and depression for some people. At SFSU, they have a long evaluative process with the team.

Overall, PD is a stressor on the brain, and medications add additional stress. When treating PD patients, the dose may need to be less, as is true for older adults as well.

Pain Management treatment
-Lots of patients take cannabis for pain. May be evidence for help with insomnia. Dr. Seritan does not recommend cannabis for treatment of mood or anxiety.
-Sometimes tricyclic anti-depressants may be prescribed for pain management.
-Often patients are already on several medications. Can be helpful to see a pain specialist.

Apps to increase vocal loudness and improve fluency (speech therapist’s favorites)

This article from September 2016 by a speech therapist lists several apps that augment voice volume, measure voice volume, or improve fluency of speech. Though this article addresses those with Parkinson’s Disease (PD) with these voice and speech problems, the apps certainly apply to anyone dealing with these problems. Many in the Brain Support Network community have low voice volume and poor fluency of speech. The speech therapist who authored the article emphasizes that these apps “require little cognitive effort.”

The apps mentioned include:

INCREASE VOCAL LOUDNESS

* Speak Up for Parkinson’s, by Sandcastle
* Decibel 10th [or Decibel X], by Skypaw Co. Ltd
* Voice Meter Pro
* Voice-o-Meter
* Sound Meter Pro

IMPROVE FLUENCY

* Parkinson’s Speech Aid
* Speech Pacesetter Lite
* DAF Professional

The full article is copied below.

Robin

=======================================================

leader.pubs.asha.org/article.aspx?articleid=2547782

App-licable Ideas for Parkinson’s Disease: A growing number of apps aim to help clients with Parkinson’s disease tackle communication challenges.
By Mandie Oslund, MS, CF-SLP
The ASHA Leader, from the American Speech-Language-Hearing Association (ASHA)
September 2016, Vol. 21

Parkinson’s disease—a neurodegenerative disorder caused by a loss of dopamine-producing neurons in the basal ganglia—affects as many as one million Americans. An estimated 90 percent of those with Parkinson’s disease experience speech and voice changes that can significantly affect their quality of life. These changes can include reduced loudness, imprecise articulation, dysfluencies, hypernasality, harsh or breathy vocal quality, and prosodic abnormalities, such as rapid rate of speech, monopitch and monoloudness.

With their interactive features and easy accessibility, apps can play a major role in speech treatment to help people with this aspect of the disease. However, trying to navigate the vast sea of options can be overwhelming to many clinicians.

Here I share with you some of my favorite apps designed to improve communication outcomes for clients with Parkinson’s disease. With these key programs in your intervention toolbox, you can help these clients live more independent and connected lives.

Apps that target increased vocal loudness are an easy way to promote home practice and carryover of treatment techniques into daily communication.

Hear me now?
Apps that target increased vocal loudness are an easy way to promote home practice and carryover of treatment techniques into daily communication. My clients find that the convenience and simplicity of these apps help to build their confidence in using new techniques outside of therapy during everyday interactions. One of them is Sandcastle’s Speak Up for Parkinson’s app (free and available for iOS devices), created by the Northwest Parkinson’s Foundation. This app allows users to practice voice exercises daily.

The app aims to increase users’ vocal amplitude in variable speaking activities involving 1) words and phrases and 2) reading and conversation to promote carryover of vocal techniques for longer durations. Both activities provide biofeedback with real-time volume monitoring with a predefined “Target Zone.”

The app provides a video review to promote recalibration of vocal loudness and self-monitoring skills. It also lists speaking tips and compensatory techniques to help enhance functional communication in daily life.

Another app that targets hypophonia in Parkinson’s disease is Decibel 10th [or Decibel X], free for iOS and for Android from Skypaw Co. Ltd. This app turns your iOS device into a professional sound meter that measures noise levels and displays the data in clear digital and analog layouts.

Two more apps, Voice Meter Pro ($3.99 for iOS) and Voice-o-Meter ($0.99 for iOS), allow users to monitor the volume of their voice using a visual sound level meter. Users can adjust the sensitivity to include an acceptable loudness range that best suits their current level of functioning and outcome goals.

What about Android users? They can measure their volume levels using Sound Meter Pro, a free app that displays measure data in decibels as related to common objects and situations (such as quiet library, alarm clocks or moderate rainfall).

Focus on fluency
Altered auditory feedback (AAF) can have long-term beneficial effects on intelligibility in a subset of people with Parkinson’s disease, according to a 2010 study by Anja Lowit, Corinne Dobinson, Claire Timmins, Peter Howell and Bernd Kröger. However, device usability and acceptability are significant limitations to AAF effectiveness. Fortunately, several apps address these concerns and allow clients to use AAF on a more familiar and accessible platform.

Parkinson’s Speech Aid (free for iOS) allows users to speak in unison with themselves with a slight delay and change in pitch, thereby reducing their rate of speech and number of repetitions. It has several user-friendly features, including a recording option for users to track their progress.

Speech Pacesetter Lite is another free app for iOS that allows users to read the text and pace their reading with the help of a visual cue and optional auditory metronome cue. It is designed to target imprecise articulation and fast speech rate in people with acquired neurological disorders.

Lastly, DAF Professional ($4.99 for iOS and $2.99 for Android) is an easy and convenient tool to help people speak more slowly when hearing their own speech in an altered manner. Although originally designed for people who stutter, the app has since become a well-established therapy tool for individuals with various communication disorders.

Try it
While there are wide-ranging apps available for clients with Parkinson’s disease, the apps listed here are unique in that they require little cognitive effort and can be customized to suit individual needs and intervention goals. With the right app, smartphones can enhance your treatment and improve intervention outcomes for people with Parkinson’s disease.

Seven tips for (Parkinson’s) caregivers

Recently I came across this article of tips for Parkinson’s caregivers. It was written in 2015 by a social worker with the Muhammad Ali Parkinson Center (MAPC) in Phoenix. Except for suggesting that readers contact a social worker at the MAPC, there is nothing Parkinson’s-specific about these tips.

The seven tips include:

1. Don’t compare yourself to someone else.
2. Evaluate your self-talk.
3. You do not have to do everything yourself.
4. Listen to those who know you best.
5. If you recognize that there needs to be a change, act on it.
6. Seek help from others to make a plan.
7. Be agreeable to change your plan.

Robin


www.barrowneuro.org/assets/winter-2015.pdf

Tips for the Caregiver
Nancy Bivins, LMSW
Southwest Parkinson News
Winter 2015

Following the diagnosis of Parkinson’s disease, as the care partner, you will find that your role changes over time. You may, for instance, need to assume the task of writing checks if your loved one has a tremor and writing is difficult. Taking on that responsibility is relatively easy and life goes on with little or no lifestyle disruptions.

As the disease progresses, the amount of assistance that is needed will also change. You will find that as needs increase, responsibilities and tasks are shifted to the most logical person, you. You may be the spouse, adult child, significant other or friend, but whatever your relationship, you are the most important person in the life of the person living with PD (PLWP).

This shifting of responsibilities is a gradual process and it is easy to understand that over time you may become overwhelmed without realizing what is happening to you. If you find that you are having feelings of needing help to manage, please consider the following tips.

1. Don’t compare yourself to someone else. We certainly can learn techniques and strategies to cope with stress, but keep in mind that we are all wired differently. Some are naturally nurturing and patient, while others find it difficult. Also, care partners may have health issues of their own. Just because others are managing in a particular way does not mean that you must do the same.

2. Evaluate your self-talk. If you find yourself thinking or saying phrases like, “I’m exhausted,” or “I can’t go another day,” it is time to make some changes. Listen to what you are saying and then spend some time to understand what this means for you specifically.

3. You do not have to do everything yourself. Identify what needs to be done to keep your household running and then ask yourself these questions: a) Does it really need to be done? b) Am I the only person who can do it? c) Can someone else do an acceptable job? You may decide that the responsibility that has been tended to weekly may fare well if done only once monthly, or that the job could be done by someone you hired, or perhaps a friend could help. Remember, it is permissible to enlist the help of others.

4. Listen to those who know you best. If your family and/or friends are expressing concern for your wellbeing because they believe that you do not have adequate relief from your physical, emotional and mental demands, it is wise to carefully consider their perspective. There is a saying, “it is difficult to see the picture when you are part of the frame.” Sometimes those closest to you can have a better understanding of your needs then you, because you are so close to the situation. If others are saying that you look tired and stressed, take their concern seriously, don’t just
discount them.

5. If you recognize that there needs to be a change, act on it. Although you and others may know that there needs to be a change it is easy to delay action, because you don’t know what to do or where to start. Keep reading.

6. Seek help from others to make a plan. There is no such thing as a “Parkinson’s Plan.” Your situation is unique because you and your loved one are unique. The plan for you may be as simple as a leisurely walk and a drink in a coffee shop to relax and recharge. Perhaps a short getaway over a long weekend for rest and relaxation is adequate. However, if a more complex intervention is needed a meeting with the social worker at the Muhammad Ali Parkinson Center (MAPC) is only a call away. The social worker is available to help you and your loved one develop a plan that is specific to you. You may be at the “fact finding” phase of your plan, which involves talking about your preferences, learning about different care options, and understanding the differences in cost.

For many people, the only thought that comes to mind when they hear the words “care options,” is that of people sitting in wheelchairs lining a long hall. Since the population is aging, many different living possibilities now exist, along with many home care agencies that can augment care in many ways from taking your loved on an outing to preparing a meal. All of this for the purpose of keeping your loved one safe, as active as possible and socially engaged.

7. Be agreeable to change your plan. Most likely you will change your plan more than once and possibly frequently. Be flexible, open to continuous evaluation and willing to change as needed. Remember, you cannot steer a parked car.

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.

Questions to ask a potential agency caregiver

The Parkinson Foundation (parkinson.org) has a useful worksheet on questions to ask an agency caregiver during the hiring process.  Though the worksheet is published by the Parkinson Foundation, there is nothing Parkinson’s-specific about the worksheet or questions.

As the worksheet says:

Hiring someone to take care of your loved one is a decision that must be made with careful consideration. There are many questions you can ask to make sure the agency can meet your needs, as well as questions to make sure the agency and its employees are competent and have the proper training,
licensing and insurance.

Here’s a link to the worksheet:

www.parkinson.org/sites/default/files/CaringandCoping_WORKSHEETS_Questions%20to%20Ask%20an%20Agency%20Caregiver_form.pdf

Robin