Monthly Archives: August 2017

“Even healthy people need a living will, but many people don’t want to think about it”

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“Even healthy people need a living will, but many people don’t want to think about it”

This is a good article from today’s “Washington Post” (washingtonpost.com) on why people may not complete a living will. The author makes the point that even if you don’t have a living will, everyone (healthy or not) should designate in writing a healthcare proxy and, ideally, have a discussion with the proxy about end-of-life wishes.

Here are some excerpts from the article:

* Even though advance directives have been promoted for nearly 50 years, only about a third of U.S. adults have them, according to a recent study. People with chronic illnesses were only slightly more likely than healthy individuals to document their wishes.

* “Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want” cardiopulmonary resuscitation, said the study’s senior author, Katherine Courtright, an instructor of medicine in pulmonary and critical care at the University of Pennsylvania. “It becomes this very scary document that says, ‘Let me die.'”

* That’s where the health-care proxy comes in. Just naming someone isn’t enough, though. To be effective, people need to have conversations with their proxy and other loved ones to talk about their values and what matters to them at the end of life.

The full article is worth reading:

www.washingtonpost.com/national/health-science/even-healthy-people-need-a-living-will-but-many-people-dont-want-to-think-about-it/2017/08/04/121f99ac-76d3-11e7-8f39-eeb7d3a2d304_story.html

Even healthy people need a living will, but many people don’t want to think about it
By Michelle Andrews
Washington Post
August 7, 2017 at 7:00 AM

Robin

 

BSN’s Allan Marcus Fund Gave Six Grants in 2017

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BSN’s Allan Marcus Fund Gave Six Grants in 2017

The Allan Marcus Fund for Families in Need with PSP has successfully completed its giving for 2017.  The Marcus family and Brain Support Network (BSN) approved six grants to families with loved ones with progressive supranuclear palsy (PSP).

The grants to PSP families provided in-home caregiving, travel to family reunions, needed physical therapy, and more.  Congratulations to all the families in the US who received grants.  It was an honor to hear your stories and help make what we hope will be precious memories.

The Marcus family aims to provide this fund annually.  Please join BSN’s PSP email list to be kept informed as more information is available in the new year.

“Five Tips for Care Partners”

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“Five Tips for Care Partners”

Here’s an infographic of the American Parkinson Disease Association’s (apdaparkinson.org) “Five Tips for Care Partners”:

org2.salsalabs.com/o/5693/images/apda_infographic.pdf

In short, the five tips are:

* Manage your stress
* Keep your own needs in mind
* Be realistic
* Take a break
* Accept changes

Certainly these five tips apply to all caregivers, not just Parkinson’s caregivers.

Most of the infographic is copied below but it’s much nicer to read online!

Robin

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FIVE TIPS for Care Partners
American Parkinson Disease Association

1. Manage your stress
Consider how stress affects your body stomach aches, high blood pressure) – and your motions (overeating, irritability). Find ways to relax.

2. Keep your own needs in mind
You are the emotional support of your loved one. But, you also need someone to support your emotional needs. Talk openly and honestly with a friend or another loved one. It is important to know you are not alone and that someone else somewhere is in a similar situation that you are.

3. Be realistic
The care you give does make a difference, but many behaviors can’t be controlled. Grieve the losses and focus on the positive times as they arise.

4. Take a break
As a care partner, it will be important for you to continue with your personal social life, exercise regularly and eat healthy. Don’t try to do everything for your loved one. If possible, allow him/her to do some daily activities on their own. This will allow you a break and it will allow him/her to be reassured that they do not need help with everything.

5. Accept changes
Eventually your loved one will need more intensive kinds of care. Research care options now so you are ready for the changes as they occur. There will be many transitions throughout the Parkinson’s journey, such as moving from a walker to a wheelchair. Don’t be afraid to ask for and accept help from your doctor, APDA, or your friends and family. Asking for assistance is a positive step for you.

 

“Caregiving Is Hard Enough. Isolation Can Make It Unbearable.”

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“Caregiving Is Hard Enough. Isolation Can Make It Unbearable.”

This article from yesterday’s New York Times “New Old Age” Blog is about caregiver isolation. Here are key excerpts from the article:

* Like so many caregivers, [Ms. Sherman-Lewis] has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.

* “Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”

* Sometimes, caregivers isolate themselves.

* Yet a habit of avoiding others — or watching them avoid you — collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality. Lonely old people, Dutch researchers have found, are more apt to develop dementia.

* “The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” Dr. Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support. “Having someone outside who is paying attention and who cares is more important,” she said.

* “Don’t invite me for lunch — you know I can’t go,” Ms. Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”

The full article is worth reading:

www.nytimes.com/2017/08/04/health/caregiving-alzheimers-isolation.html

Health | The New Old Age
Caregiving Is Hard Enough. Isolation Can Make It Unbearable.
by Paula Span
The New York Times
Aug. 4, 2017

Robin

Aug 2017 Parkinson’s Support Group Mtgs – Guest Speakers – NorCal + Central CA

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Aug 2017 Parkinson’s Support Group Mtgs – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for August 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:

* Visalia, Friday, 8/4 – Movement disorder specialist Jeri Williams, MD, will be speaking about psychosis (hallucinations and delusions) in Parkinson’s Disease. This talk certainly applies to Lewy Body Dementia. Note that this talk is sponsored by a pharmaceutical company.

* Palo Alto/Avenidas, Wednesday, 8/9 – A great speaker from Home Instead Senior Care will be addressing senior care options, hiring in-home aides, and best practices at home (protecting yourself and your belongings). There is nothing Parkinson’s-specific about this talk. And it’s not a sales pitch.

* Santa Rosa, Saturday, 8/12 – Movement disorder specialist Maya Katz, MD, will focus on hospitalization and drug interactions.

* Yuba City, Monday, 8/14 – A speech therapist will speak about communication and swallowing issues in PD

* Auburn, Tuesday, 8/15 – A clinical psychologist will be addressing sleep issues and insomnia management in PD

* Walnut Creek, Saturday, 8/19 – A panel talks about medical marijuana and PD. Certainly this talk applies to our community.

* Fremont, Monday, 8/28 – A physical therapist discusses physical therapy for PD

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
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Placerville
Tuesday, 8/1, 1:30-3pm
Discussion Topic: What special attention is needed by those with PD while traveling to/from holiday vacations and events
RSVP?: No.

 

San Jose/Willow Glen
Friday, 8/4, 10am-noon (speaker starts about 10:20am)
Guest Speaker: Laurice Yang, MD, movement disorder specialist, Stanford Neurology
Topic: Updates in PD treatment
RSVP?: No.

Visalia
Friday, 8/4, 10:30am-noon
Guest Speaker: Jeri Williams, MD, movement disorder specialist, private practice, Bakersfield
Topic: Treating psychosis in PD
RSVP?: No.

Bakersfield
Tuesday, 8/8, 2-4pm
Guest Speaker: Betsy Koznin, RN
Topic: Apokyn
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill Burgemaster, 661-343-2707

Pacific Grove (Monterey County)
Tuesday, 8/8, 3-4:30pm
Guest Speaker: Henry Marquez
Topic: ADA compliant model
RSVP?: No.

Palo Alto Young Onset Parkinson’s
Tuesday, 8/8, 6:30-8pm
Guest Speaker: Katie Parafinczuk, DPT, physical therapist, Kaiser Redwood City, and PD exercise instructor
Topic: Parkinson’s exercise
RSVP?: Yes, if this is your first time attending. Please RSVSP to Martha Gardner, group leader, [email protected], by August 7th.

Palo Alto/Avenidas
Wednesday, 8/9, 2-3:30pm
Main Speaker: Nikki Hochhauser, Home Instead Senior Care, Peninsula
Topics: Senior care options, hiring in-home aides, and best practices at home (protecting yourself and your belongings)
RSVP?: No.

Sonoma/Vintage House
Thursday, 8/10, 10-11am
Guest Speaker: Colleen Fisher, National Parkinson Foundation, Bay Area
Topic: Community programs and resources
RSVP?: No.

Stockton
Thursday, 8/10, 1:30-3pm
Discussion Topics: How are your medications working for you? What do you need to tell the doctor?
RSVP?: No.

Los Altos Young Parkinson’s
Saturday, 8/12, 10am-noon
Guest Speaker: Aura Oslapas
Topic: Application under development for those with PD
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 8/12, 1-3:15pm (speaker from 1-2pm)
Guest Speaker: Maya Katz, MD, movement disorder specialist, UCSF and San Francisco VA
Topics: Hospitalization and drug interactions
RSVP?: No.

Yuba City (Tri-Counties)
Monday, 8/14, 1-2pm
Guest Speaker: Amber Smith, SLP, speech therapist, Fountains Skilled Nursing Facility
Topic: Communication and swallowing issues in PD
RSVP?: No.

Gilroy
Monday, 8/14, noon-1:30pm
Program: Panel of group members discussing various stages of PD
RSVP?: No.

Lincoln
Tuesday, 8/15, 10-11am
Guest Speaker: Tuan Nguyen, pharmacist, Lincoln Pharmacy
Topics: Medications and interactions for those with PD
RSVP?: No.

Auburn
Tuesday, 8/15, 1:30-3pm
Guest Speaker: Eric Egli, PhD, clinical psychologist, Roseville
Topics: Sleep issues and insomnia management in PD
RSVP?: No.

Hollister
Friday, 8/18, 1:30-3:30pm
Discussion Topic: Importance of water in PD
RSVP?: No.

Walnut Creek (Mt. Diablo)
Saturday, 8/19, 9am-noon (panel 10:45am-11:45am)
Panelists: Eloise Theisen, RN, founder, Green Health Consultants, and Rebecca and Tim Byers, co-founders, Agathist Collective
Topic: Medical marijuana and PD
RSVP?: No.

Fremont
Monday, 8/28, 7-9:30pm
Guest Speaker: Priti Chitale, PT, physical therapist, Kaiser San Leandro
Topic: Physical therapy for PD
RSVP?: No.