Webinar on hallucinations and delusions in LBD, June 28th

The Lewy Body Dementia Association (lbda.org) is hosting a webinar this Wednesday, June 28th at 11am California time on hallucinations and delusions in Lewy body dementia (LBD).   “Lewy body dementia” is a term that includes Parkinson’s Disease Dementia and Dementia with Lewy Bodies.

The featured speaker is Jim Galvin, MD, a neurologist who is an expert on LBD.  There is no charge to attend.  Details below.

Updated as of June 30th:  Brain Support Network posted our notes to the webinar (including the Q&A session) here:





LBDU Webinar:
The Reality of LBD – Hallucinations & Delusions & How to Manage Them
Wednesday, June 28, 2017
2:00 pm Eastern Time

James E. Galvin, MD, MPH
Professor of Integrated Medical Science
Associate Dean for Clinical Research
Charles E. Schmidt College of Medicine
Florida Atlantic University

Seeing things that aren’t there and/or holding firmly to beliefs that aren’t real – these symptoms of vivid hallucinations and delusions are the reality that haunts those suffering with Lewy body dementia (LBD) – and their caregivers. Yet, LBD makes patients sensitive to medications that are typically used to manage these vivid hallucinations and delusions. LBD requires a careful and conservative approach to managing these upsetting symptoms.

Join LBDU and Dr. James E. Galvin of the Charles E. Schmidt College of Medicine at Florida Atlantic University for a free, informative webinar on hallucinations and delusions in LBD. Dr. Galvin will discuss current strategies to manage hallucinations and delusions in LBD. He also will share information about ongoing research and clinical trials.


Short video on the science of Lewy Body Dementia – what is a “Lewy body”?

Though this video is 18 months old and addresses in a general way the (now old news) that actor Robin Williams had Lewy Body Dementia, I still think the video is worth watching.  It’s one of the best descriptions I’ve seen of Lewy bodies.  The video, titled “The Science of Lewy Body Dementia,” is about 4.5 minutes, and it’s part of the “SciShow.” Here’s a link:


The Science of Lewy Body Dementia
Hosted by: Hank Green, SciShow (patreon.com/scishow)
Published on Nov 13, 2015
Description:  This week in SciShow News we dissect what a Lewy Body is and what they are capable of doing.

One thing confused me about the video.  The statement is made that the “autopsy of Robin Williams showed he was suffering from the early stages of Lewy Body Dementia.”  And the video says that the widow of Robin Williams indicates he had no advanced symptoms. However, we know from his autopsy report that he had the most severe level of Lewy bodies in the brain one can have.  And friends reported that he had delusions.  But, other than that, it’s a great video!

My notes are below.


Robin’s Notes from

The Science of Lewy Body Dementia
Hosted by: Hank Green, SciShow (patreon.com/scishow)
Published on Nov 13, 2015
This week in SciShow News we dissect what a Lewy Body is and what they are capable of doing.

Autopsy of Robin Williams showed he was suffering from the early stages of Lewy Body Dementia.

LBD is often mistaken for PD until hallucinations begin.

There’s about a minute here on Lewy bodies and a bit about alpha-synuclein.

We only zero-ed in on the differences between Lewy Body Dementia and Parkinson’s Disease in the 1990s.

LBD is misdiagnosed so frequently — as either Parkinson’s or Alzheimer’s Disease, depending on an individual’s symptoms — that is hasn’t attracted much attention.

Host says that new methods in brain tissue only allowed us to see Lewy bodies in other parts of the brain (perhaps besides the brain stem) in the 1990s.

Symptoms of LBD, which host also called advanced LBD:
* hallucinations
* loss of spatial reasoning
* sleep disorders
* cognitive and memory impairment, similar to Alzheimer’s

According to Susan Schneider Williams’s statement and the autopsy report of Robin Williams, he was not suffering from any of these advanced symptoms at the time of his death.

Webinar Notes – Sleep Issues in LBD, MSA, and PD

On June 22nd, the Lewy Body Dementia Association (lbda.org) hosted a good one-hour webinar on sleep problems in Lewy Body Dementia (LBD).  This post provides the Brain Support Network notes about the webinar.

Most of the webinar is of relevance to sleep issues in Multiple System Atrophy (MSA) as well.

The presenter, a sleep disorders neurologist at UCLA, addressed these topics:
* function of sleep
* how much sleep do we need
* obstructive sleep apnea (OSA)
* REM sleep behavior disorder (RBD)
* restless legs syndrome (RLS)
* insomnia
* conclusions about RBD and DLB

I was surprised that excessive daytime sleepiness was not addressed during the presentation. I suppose since the sponsoring pharmaceutical company is studying a drug for RBD, that was really the focus.

The highlight of the webinar was the question-and-answer session, which was well-facilitated by Angela Taylor of the LBDA. The questions were about:
* RLS and diabetic neuropathy
* excessive daytime sleepiness
* napping
* melatonin dosage
* neurodegenerative disease risk

Note that the presenter sometimes uses the term Dementia with Lewy Bodies.  “Lewy body dementia” is a term that includes both DLB and Parkinson’s Disease Dementia.

My detailed notes from the webinar (including the question-and-answer session) are below.

The presentation is here:

The webinar recording is here:
(Note: there’s a problem with the slides for the first eight minutes or so.)



Robin’s Notes from

LBDU Webinar: Sleep Issues in LBD
June 22, 2017

Presenter: Dr. Alon Y. Avidan, MD, MPH, Professor of Neurology, Director of the UCLA Sleep Disorders Center.

Theory that sleep is restorative. Memory is consolidated. If you don’t sleep well, your memory and cognitive abilities may decline.

Sleep is rejuvenative. Brain’s glymphatic system is most active during sleep. The brain “takes out the trash” while we sleep. Trash = byproducts and toxins. The function of the glymphatic system was only characterized in the last few years. Lack of good sleep puts the patient at risk for more disease and poor health.

14:13 Most adults need 7-8 hours. If less than 4 hours, you are putting yourself at risk for heart disease, depression, diabetes, and cardiovascular disease. Sleep needed varies by age groups. National Sleep Foundation recommends 7-9 hours for adults. Later, the American Academy of Sleep Medicine recommends 7-8 hours; less or more than that is not good. Healthy sleep duration is 7 hours or more each night (regularly). Good sleep on weekends is important.

Less than 7 hours/night regularly, puts you at risk for weight gain and obesity, diabetes, hypertension, heart disease, stroke, depression, increased risk of death, depressed immune function, increased pain, poor performance, increased risk, and increased accidents.

16:48 Sleep is often affected by aging process but it doesn’t have to be this way. As we age, we have more pain, more sleep apnea, more RLS, more comorbid disorders, and take more medications. Don’t be satisfied with 4-5 hours of sleep. Make an effort to improve sleep quality and duration.

18:10 Obstructive sleep apnea is affected by age, weight, alcohol. Alcohol can convert someone from simple snoring to sleep apnea. 20-80 times to stop breathing in one hour! CPAP therapy is gold-standard treatment.

20:20 This is the most important sleep disorder in those with LBD. REM sleep behavior disorder is a type of parasomnia (abnormal behavior in sleep). Muscles are supposed to be paralyzed when dreaming. In RBD, patients act out dreams. Concerns are self-injury or injury of bed partner. Incomplete transition from REM sleep to non-REM sleep (where you are nearly awake). REM sleep without atonia.

RBD is common in alpha-synucleinopathies (PD, DLB, MSA). RBD can present before the onset of neurodegenerative disease. Usually 2/3 of patients will develop neurodegenerative disease within 10 years.

Sleep neurologists should tell patients diagnosed with RBD that they are “at risk for dementia later in life.”

RBD is part of the diagnostic criteria for DLB.

Dreams in RBD are rarely pleasant.

26:10 Treatment focuses on safety: bedroom safe; remove hard/sharp objects; sleep in padded mattress; place mattress on floor; cover windows with heavy curtain; use pillow barricades. Until managed, sleep alone. Sleep in sleeping bag until treated. Medications: melatonin (he prefers because it’s the safesty; 5mg up to 15mg), clonazepam (.25 to .5mg; had side effects, such as grogginess).

RBD could be a window of opportunity in DLB. Nelotanserin clinical trial is ending at the end of June 2017. Lead institution is Mayo.

28:19 Restless legs syndrome. Urge to move the legs occur primarily in the evening. Many LBD patients have this condition. Very bothersome. Often physicians don’t know how to diagnose RLS. Symptoms get worse with inactivity. Difficult to relieve leg discomfort. Driving or flying long distances – especially difficult. Effective treatments available.

29:46 One-third of patients with neurodegenerative disease are affected by insomnia, particularly middle-of-the-night insomnia. Alcohol is not a good idea for insomnia. Get out of bed; avoid staying in bed awake. Talk to your MD about potential treatments.

30:40 Conclusions
* sleep disorder increases odds of DLB by 5x over Alzheimer’s
* RBD is strongest prognosticator of dementia, including DLB

Future research into RBD will focus on:
* benefit of exercise
* role of dietary factors (dairy products, saturated and animal fat, lower use of Mediterranean diet and of non-steroid drugs)
* role of melatonin as a neuroprotective agent
* establish guideline about agents that can help prevent phenoconversion from RBD to DLB


31:48 Notes from Question-and-Answer session:

Q: RLS and diabetic neuropathy
A: Common situation. The medication gabapentin can address both problems. Talk to a PCP. RLS diagnosis must be validated.


Q: Excessive daytime sleepiness is common. How do you know if sleepiness is excessive?
A: Well-validated measures of EDS to assess what is abnormal and what is not. Epworth Sleepiness Scale (ESS) can be used. You can find the scale online. Falling asleep immediately upon watching TV at any time of day, for example, is excessive.


Q: What is the maximum number of nap-time that will not disrupt nighttime sleep?
A: If “hours,” it’s already not good. Naps should be short (15-20 minutes) and strategic (1-3pm). Sleep is not like a bank account.


Q: What treatments are there for EDS?
A: Stimulants should not be the focus. We should use good sleep to give us energy. Exception to the “avoid medications” rule is narcolepsy, which is very rare. Shift workers or patients with sleep apnea who are still fatigued could be given stimulants. But I would never give someone with EDS a stimulant because this doesn’t address the problem of poor sleep. First find out what is causing the sleep disruption. One thing that can be helpful in treating LBD sleepiness is light. Light exposure, especially early in the day, is important. We don’t have good data on wake-promoting agents in LBD.


Q: Dosage of melatonin for LBD for sleep or RBD?
A: Melatonin for RBD – high-dose melatonin (3mg, increasing by 3mg every two weeks up to 12mg). We have good data on RBD. Could consider 5mg sustained release melatonin. This increases by 5mg every two weeks up to 15mg. If 12mg or 15mg don’t work, consider adding clonazepam. If that doesn’t work, look again into the cause of RBD. Often RBD is due to other substance patient is taking but forgot reporting initially to MD.

Low-dose melatonin (.5mg) – circadian rhythm problems. Middle-dose melatonin – insomnia.


Q: Is RLS or sleep apnea associated with neurodegenerative diseases?
A: No data whatsoever that RLS puts you at risk for neurodegenerative disease. Nor is it a prognosticator.

Untreated sleep apnea puts you at risk for accelerated neurodegeneration, if you already have a predisposition for development of Alzheimer’s.


Q: If you have RBD and receive treatment for it, can you reduce risk of neurodegenerative disease?
A: We don’t know. If you use clonazepam, you are probably not going to reduce risk of disease. We don’t know for sure about melatonin. Some believe that melatonin is neuroprotective. But patients taking melatonin don’t have slower progression towards neurodegeneration. Disease process isn’t reversed.

RBD is a great biomarker. This means that we can use it to test neuroprotective agents.


Angela Taylor, LBDA:
LBDA research page — lbda.org/participate-in-research

Enrollment for one RBD study has been extended.


Sleep issues in LBD and MSA, Thursday 6/22, webinar

The Lewy Body Dementia Association (lbda.org) is hosting a webinar this Thursday 6/22 at 11:30am California time on sleep issues in Lewy body dementia (LBD).  The content also applies to those in the multiple system atrophy (MSA) and Parkinson’s Disease (PD).

Sleep issues to be addressed by a UCLA sleep disorders specialist include REM sleep behavior disorder, daytime sleepiness, restless leg syndrome, insomnia, obstructive sleep apnea, and periodic limb movement.  There is no charge to attend.  Details below.

Updated, 6/23/17:  See our blog post of the notes from this webinar:





Webinar – Sleep Issues in LBD
Thursday, June 22, 2017
2:30 pm Eastern Time

Did you know that most people with LBD have at least one sleep disorder?
From REM sleep behavior disorder, which causes frightening dreams that sufferers often act out, to daytime sleepiness, restless leg syndrome, insomnia, obstructive sleep apnea, and periodic limb movement, those with LBD often have sleep issues that dramatically effect their quality of life and can lead sometime lead to injuries to themselves and others. In addition, the sleep disorders associated with LBD can begin years to decades earlier than other common LBD symptoms such as memory loss or confused thinking.

Join LBDU and Dr. Alon Y. Avidan, MD, MPH, Director of the UCLA Sleep Disorders Center for a free, informative webinar on sleep issues in Lewy Body Dementia.

Dr. Avidan will explain changes in sleep patterns with aging specific to Lewy Body Dementia. He also will share information about the management of LBD-related sleep disorders, as well as treatment strategies, ongoing research and clinical trials.

Dr. Alon Y. Avidan, MD, MPH
Professor of Neurology
Vice Chair Clinical and Educational Affairs
Department of Neurology
Director of the UCLA Sleep Disorders Center
David Geffen School of Medicine at UCLA

Those with neurological disorder have suggestions for family and friends

Though this blog post is written by people with Lewy Body Dementia, very little of this is specific to LBD, which is why I’m sharing it on our blog. Whenever you read “LBD” or “Lewy body dementia,” just replace it with the disorder you are dealing.

Last year, an Ann Arbor support group for those with an LBD diagnosis created a list of things to keep in mind when you have a family member or friend with LBD.  These are suggestions of what families and friends “can do and don’t do.”  The list includes items such as:

* give me some slack
* don’t hover
* let me make a mistake

The list is posted to the University of Michigan Health Blogs.  I’ve copied most of the blog post below.




When you love someone with Lewy Body Dementia
Suggestions for family and friends from people with LBD
Posted by Members of the Ann Arbor Support Group on April 22, 2016
University of Michigan Health Blogs

Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.

It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.

I have Lewy Body Dementia (LBD). Please . . .

Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.

Don’t hover. It’s annoying and sometimes it makes me nervous. You probably wouldn’t like someone hovering over you constantly.

Let me make the mistake—don’t do it for me. I’m sure you want to help, but it can feel demeaning to be treated as though I’m incapable of doing things for myself.

Continue to treat me like I’m part of the family. My illness is not contagious and I still care for you as much as ever. Invite me to things and if I don’t feel like going, I’ll let you know.

Don’t make assumptions—ask me. For example, just because I was tired one day doesn’t mean I’m always too tired to do something. Please don’t think for me—ask me.

Be patient when we’re talking. Sometimes I lose my train of thought, but give me a chance. My thought will come back around.

If you can’t hear me, ask me to speak up. I’m not always aware that my voice may have grown softer. If you don’t tell me, I don’t know you can’t hear me.

Don’t talk about me as though I’m not there. My thinking may be affected but I can still hear. Would you like to be treated as though you didn’t exist?

Remember that the time of day and medications can affect my energy and alertness. Sometimes my meds—and when I’ve taken them—can really impact how “with it” I appear. The effects are as unpredictable to me as they are to you.

A few of the things we appreciate

This list wouldn’t be complete if it only focused on what not to do. Group members recognize how much love and support their family and friends give them. Here are some of the things we appreciate.

I like it when . . .

You help with my medications. I appreciate your helping me stay healthy by organizing my meds and giving me reminders.

You go to doctors’ appointments with me. It’s good to have another set of ears taking in the information and advocating on my behalf.

We’re working as a team. This disease is affecting you as well as me and it’s good to feel that we’re dealing with it together.

You research helpful LBD information and resources. I appreciate the effort you put into looking for new information that can help us deal with this disease.

A final note for caregivers

Be sure to take care of yourselves. It’s great you’re concerned about me, but if you wear yourself out, how will you be able to help me? Remember, we’re in this together.

This list is not comprehensive

It simply reflects the thoughts of the members of the Ann Arbor Support Group. If you are not sure what is helpful, ask your loved one. And keep in mind that things are likely to change as the disease progresses. Use this document to start a conversation with your LBD “teammate.”

Note: This information was created by people with Lewy Body Dementia (LBD) who attend a support group just for them while their care partners meet in another room.

“Dreams and Brain Disease: REM Sleep Cells Linked to Disorders”

This article on last week’s Live Science (livescience.com) is about REM sleep behavior disorder (RBD), which is acting out dreams. This symptom in common in Parkinson’s Disease, Dementia with Lewy Bodies, and Multiple System Atrophy. The vast majority of those with RBD have one of these three disorders and often one of these neurological disorders comes to light years (or decades) after the first signs of RBD.

Here’s a link to the full article:

Live Science
Dreams and Brain Disease: REM Sleep Cells Linked to Disorders
By Tracy Staedter, Live Science Contributor
May 30, 2017 07:06pm ET

“Lesser known dementia, Lewy body, blurs lines of reality”

This evening I ran across an article in the Lincoln (Nebraska) Journal Star newspaper about Phyllis Schmitz, with Lewy body dementia, and her husband Tom. Phyllis’s first symptoms were rapid weight-loss, hallucinations, and sleep disturbances.

Here’s a link to the article:


Lesser known dementia, Lewy body, blurs lines of reality
Erin Andersen
Lincoln Journal Star
Feb 25, 2017

June 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California PD support group meetings for June 2017.

With my Brain Support Network 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 PD support group meetings:

Santa Rosa, Sat 6/3:  Neurologist speaks about mood, cognitive, and sleep disorders in PD.  This might be applicable to those with DLB and MSA.

Roseville, Tues 6/6:  Learn from a pharmaceutical company rep about a new drug for hallucinations and delusions.  This is applicable to those with DLB.

Sonoma/Vintage House, Thurs 6/8:  Topic is balance and fall prevention.  Speaker unlikely to know about any of the atypical parkinsonism disorders specifically but she probably has some good suggestions.

Stockton, Thurs 6/8:  Medical marijuana is the topic

Gilroy, Mon 6/12:  Listening to and discussing Michael J. Fox Foundation podcasts on sleep disturbances and urinary problems in Parkinson’s.  This is applicable to those with DLB and MSA especially.

Pacific Grove (Monterey County), Tues 6/13:  Speech therapist talks about speech and swallowing changes in PD.  This is applicable to all the disorders in our group.

Palo Alto Young Onset Parkinson’s Group Tues 6/13:  Medical cannabis is the topic

Palo Alto/Avenidas, Wed 6/14:  Manager of Stanford’s Farewell to Falls program will be speaking on the topic of fall prevention.  This is applicable to everyone in our group, whether you can take advantage of Stanford’s program or not.

Sacramento/Arden Arcade, Thurs 6/15:  Movement disorder specialist Lin Zhang, MD, PhD will be addressing the non-motor symptoms of PD.  These symptoms are part of the disorders in our group.

Mill Valley, Fri 6/13:  Registered dietitian speaks about nutrition and PD.  Most of the information should be applicable to those in our group.

Fremont, Mon 6/26:  Movement disorder specialist Han Lee, MD will be the guest speaker.  Unfortunately we don’t know his topic.  But he is very familiar with all the disorders in our group.

Generally, I recommend driving no more than 30 minutes to attend any of these meetings.  If you attend a meeting and learn anything, please share with me so that I can share with others!

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:


As always, I’ve deleted the deep brain stimulation-related talks.



Half Moon Bay
Thursday, 6/1, 3-4pm
Guest Speaker:  Cherry Tuck, PD fighter
Topic:  Her journey
RSVP?:  No.

San Jose/Willow Glen
Friday, 6/2, 10am-noon (program starts about 10:20am)
Program:  Break into two groups — those with PD and caregivers
RSVP?:  No.

Santa Rosa (Sonoma County)
Saturday, 6/3, 1-3:15pm  (guest speaker 1-2pm)
Guest Speaker:  Allan Bernstein, MD, neurologist, Santa Rosa
Topic:  Mood, cognitive, and sleep disorders in Parkinson’s
RSVP?:  No.

Monday, 6/5, 10-11am
Guest Speaker:  Dianna Powell, San Joaquin County coordinator, Legal Services of Northern California
Topic:  HICAP and Medicare updates
RSVP?:  No.

Tuesday, 6/6, 1:30-3pm
Guest Speaker:  Saul Avila, Acadia Pharmaceuticals
Topic:  Nuplazid – new drug for psychosis and schizophrenia associated with Parkinson’s
RSVP?:  No.

San Francisco/UCSF Young Onset Parkinson’s Group
Tuesday, 6/6, 6:30-8pm
Guest Speaker:  Cameron Wisdom, Mission Bay Rock Steady Boxing Gym, San Francisco
RSVP?:  Yes, preferred to Monica Volz, [email protected]

Soquel (Santa Cruz County)
Wednesday, 6/7, 1-2:30pm
Guest Speaker:  Jenifer Armstrong, PharmD, pharmacist, Santa Cruz
Topic:  PD – Inside and out of the prescription bottle
RSVP?:  No.

Wednesday, 6/7, 1:30-3pm
Guest Speaker:  Attorney, Corporon Law Offices
Topic:  Long-term care planning (trusts, wills, and other legal documents)
RSVP?:  No.

Sonoma/Vintage House
Thursday, 6/8, 10-11am
Guest Speaker:  Vanessa Kettler, balance instructor
Topic:  Balance and fall prevention
RSVP?:  No.

Thursday, 6/8, 1:30-3pm
Guest Speaker:  Christopher Trinchera
Topic:  Medical marijuana
RSVP?:  No.

St. Helena/Rianda House  (new group)
Thursday, 6/8, 3:30-4:30pm
Guest Speaker:  Barbara Brown, PT, physical therapist, St. Helena Hospital
Topic:  Importance of a PT’s expertise in a PD care plan
RSVP?:  No.

Saturday, 6/10, 10am-noon
Guest Speaker:  Beate Ritz, MD, PhD, UCLA
Topic:  PEG (Parkinson’s, Environment & Genes) study at UCLA
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 6/12, 1-2pm
Guest Speaker:  Carly Pacheco, deputy director, FREED Center for Independent Living, Grass Valley
Topic:  FREED Center’s services
RSVP?:  No.

Monday, 6/12, noon-1:30pm (new time)
Program:  Listening to and discussing Michael J. Fox Foundation podcasts on sleep disturbances and urinary problems in Parkinson’s
RSVP?:  No.

Tuesday, 6/13, 2-4pm
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC Davis, Sacramento
Topic:  PD and the management of off episodes with Apokyn
RSVP?:  Yes to group leaders Linda Feist, 661-304-9227, or Bill Burgemaster, 661-343-2707

Pacific Grove (Monterey County)
Tuesday, 6/13, 3-4:30pm
Guest Speaker:  Katie Pietsch, SLP, speech therapist, CHOMP
Topic:  Think LOUD! – Speech and swallowing changes in PD
RSVP?:  No.

Palo Alto Young Onset Parkinson’s Group
Tuesday, 6/13, 6:30-8pm
Guest Speaker:  Helen Garvy, PD advocate and care partner
Topic:  Medical cannabis for PD
RSVP?:  Preferred, if this is your first time.  RSVP at least 24 hours in advance to Martha Gardner, group leader, email [email protected]

Wednesday, 6/14, 1-2pm
Guest Speaker:  Robert McCulla, DDS, dentist
Topic:  Parkinson’s and sleep
RSVP?:  No.

Palo Alto/Avenidas
Wednesday, 6/14, 2-3:30pm
Guest Speaker:  Ellen Corman, manager, Farewell to Falls, Stanford Health Care
Topic:  Fall prevention in Parkinson’s
RSVP?:  No.

Sacramento/Arden Arcade
Thursday, 6/15, 10am-noon
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC
Davis, Sacramento
Topic:  PD – more than motor symptoms
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 6/17, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Nijee Luthra, MD, PhD, movement disorders fellow, UCSF
Topic:  Advances in treatment of Parkinson’s
RSVP?:  No.

Tuesday, 6/20, 10-11am
Guest Speaker:  Millie Nunez, PD cycling instructor, Sun City Lincoln Hills
Topic:  Nutrition and forced exercise
RSVP?:  No.

Tuesday, 6/20, 1:30-3pm
Guest Speaker:  Stephanie Fiola, RN, AbbVie Pharmaceuticals
Topic:  Discovering Duopa – carbidopa/levodopa eternal suspension
RSVP?:  No.

Wednesday, 6/21, 1:30-3:30pm
Guest Speaker:  Carlos Becerra, personal trainer, Alpha Fitness
RSVP?:  No.

Auburn (special bonus meeting at same location as regular meeting)
Thursday, 6/22, 6-7:30pm
Guest Speaker:  Robert Ghelfi, MD, Northern California Surgical Group, Redding
Topic:  Stem cell therapy for PD
RSVP?:  No.

Mill Valley (Marin County)
Friday, 6/23, 1-3pm  (guest speaker 1-2pm)
Guest Speaker:  Sue Weiss, RD, dietitian, Kaiser San Rafael
Topic:  Nutrition and Parkinson’s
RSVP?:  No.

Monday, 6/26, 7-9:30pm
Guest Speaker:  Han Lee, MD, movement disorder specialist, Kaiser San Leandro
RSVP?:  No.

“Do as I say, not as I did” in building your care team

I recently became acquainted with Kate Burke of Montrose, CO. She had been caring for her husband with Lewy Body Dementia on a 24×7 basis for quite a few years. Her website, Caregiver’s Journey (caregiver-journey.com), offers some good advice for all caregivers as do her two books. Thus far, her books have not been LBD-focused.

Her website says: “[Like] so many of her fellow Caregivers, Kate ignored her own warnings and fell victim to Caregiver Burnout. Both she and her husband wound up in the hospital.” “Under extreme duress,” Kate made the heart-wrenching decision to place her husband in a nursing home.

“Do as I say, not as I did,” Kate advises, but then, many of us might still follow the same path that she did, waiting almost too long to accept that their own care must come first if they are to care for someone else. “That’s why we need a Care Team, why it’s so important,” she asserts. “Your team, and everyone on it offer support and (hopefully) help you avoid a Caregiver Crisis that could take you down!”

More recently she placed her husband on hospice, which she describes as “another difficult decision” but with a positive side — more one-on-one help. (He died in April 2017 at a hospice facility.)

“Your Care Team is fluid, constantly changing to fit specific needs. Caregiving is hard, but it has its rewards, too. Having a Care Team is one of them.”

In April 2017, she published a book titled “The Caregivers Journey, Building Your Care Team.” Her website discusses the book series and a few aspects of her journey.

Here’s a link to an article written by Kate for her local newspaper on the topic of “Building Your Care Team.” The article is posted to her website, caregiver-journey.com.


Building Your Care Team
Montrose Daily Press
By Kathryn R. Burke
March 19, 2017

Actress Dina Merrill had Lewy body dementia

Actress Dina Merrill died recently.  She was a guest on many TV shows, including “Bonanza,” “Mission: Impossible” and “Murder, She Wrote.”  Her son reported that she had Lewy body dementia.  The New York Times obituary says nothing about her LBD journey.

Here’s a link to the obituary: