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
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:
parkinsons.stanford.edu/support_groups.html
As always, I’ve deleted the deep brain stimulation-related talks.
Robin
**********************
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.
Lodi
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.
Roseville
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.
Chico
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.
Stockton
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.
Fresno
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.
Gilroy
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.
Bakersfield
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].
Turlock
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.
Lincoln
Tuesday, 6/20, 10-11am
Guest Speaker: Millie Nunez, PD cycling instructor, Sun City Lincoln Hills
Topic: Nutrition and forced exercise
RSVP?: No.
Auburn
Tuesday, 6/20, 1:30-3pm
Guest Speaker: Stephanie Fiola, RN, AbbVie Pharmaceuticals
Topic: Discovering Duopa – carbidopa/levodopa eternal suspension
RSVP?: No.
Modesto
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.
Fremont
Monday, 6/26, 7-9:30pm
Guest Speaker: Han Lee, MD, movement disorder specialist, Kaiser San Leandro
RSVP?: No.
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.
caregiver-journey.com/kathryn-burke-articles/building-care-team/
Building Your Care Team
Montrose Daily Press
By Kathryn R. Burke
March 19, 2017
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:
www.nytimes.com/2017/05/22/
Robin
There’s been quite a bit published this year about those with “Pure Autonomic Failure” converting to Parkinson’s Disease (PD), Dementia with Lewy Bodies (DLB), or Multiple System Atrophy (MSA). (All three disorders are alpha-synucleinopathies.)
PAF is a disorder of the autonomic system. The autonomic system controls things that the body generally handles automatically such as blood pressure, heart rate, eye blink, body temperature, sweating, digestion, etc.
This article, published in February 2017, is authored by the Autonomic Disorders Consortium, a group made up of the key autonomic specialists in the US.
In this study of 74 subjects at five US medical centers (NYU, Vanderbilt, Mayo Rochester, NIH, and Harvard), about one-third (34%) developed DLB (n=13), PD (n=6), or MSA (n=6) over four years. Overall, 14% of people converted from PAF to one of the three alpha-synculein disorders each year. Many of those who converted had REM sleep behavior disorder (RBD).
Other symptoms were associated with who got MSA, DLB, or PD:
* “Patients who phenoconverted to multiple system atrophy had younger age at onset of autonomic failure, severe bladder/bowel dysfunction, preserved olfaction, and a cardiac chronotropic response upon tilt > 10 beats per minute.” The “younger age” was early 50s. On average, those in the PAF group who converted to MSA had PAF symptoms for fewer than five years.
* “Those who phenoconverted to Parkinson disease or dementia with Lewy bodies had decreased olfaction, a lesser chronotropic response to tilt, and a longer duration of illness.” “Longer duration of illness” refers to the fact that, on average, those in the PAF group who converted to PD or DLB had PAF symptoms for nearly ten years.
And: “The small group of patients retaining the pure autonomic failure phenotype had very low plasma norepinephrine levels, slow resting heart rate, no REM sleep behavior disorder, and preserved smell.”
Here’s a link to the full article (available at no charge online):
www.ncbi.nlm.nih.gov/pmc/artic
The abstract is copied below.
Robin
——————————
Annals of Neurology. 2017 Feb;81(2):287-297.
Natural history of pure autonomic failure: A United States prospective cohort.
Kaufmann H, Norcliffe-Kaufmann L, Palma JA, Biaggioni I, Low PA, Singer W, Goldstein DS, Peltier AC, Shibao CA, Gibbons CH, Freeman R, Robertson D; Autonomic Disorders Consortium.
Abstract
OBJECTIVE:
To define the clinical features and biomarkers that predict which patients with pure autonomic failure will develop Parkinson disease, dementia with Lewy bodies, or multiple system atrophy.
METHODS:
One hundred patients who presented with pure autonomic failure were recruited at 5 medical centers in the United States. Seventy-four patients agreed to be followed prospectively. Patients underwent clinical evaluations including neurological rating scales, sleep questionnaires, smell test, and sympathetic and parasympathetic cardiovascular autonomic function tests.
RESULTS:
At enrollment, patients were 68 ± 12 years old (median ± interquartile range) and had had autonomic failure for 5 ± 7 years. Within 4 years of follow-up, 25 of 74 subjects (34%) developed dementia with Lewy bodies (n = 13), Parkinson disease (n = 6), or multiple system atrophy (n = 6). The presence of probable rapid eye movement (REM) sleep behavior disorder was strongly associated with the development of a manifest central nervous system (CNS) synucleinopathy (odds ratio = 7.1). Patients who phenoconverted to multiple system atrophy had younger age at onset of autonomic failure, severe bladder/bowel dysfunction, preserved olfaction, and a cardiac chronotropic response upon tilt > 10 beats per minute. Those who phenoconverted to Parkinson disease or dementia with Lewy bodies had decreased olfaction, a lesser chronotropic response to tilt, and a longer duration of illness. The small group of patients retaining the pure autonomic failure phenotype had very low plasma norepinephrine levels, slow resting heart rate, no REM sleep behavior disorder, and preserved smell.
INTERPRETATION:
Patients presenting with pure autonomic failure are at high risk of phenoconverting to a manifest CNS synucleinopathy. Specific clinical features predict future diagnosis.
© 2017 American Neurological Association.
PMID: 28093795
www.ncbi.nlm.nih.gov/pubmed/28
