“Sometimes Patients Simply Need Other Patients” (NYT)

This is a good article on the value of online patient groups:

www.nytimes.com/2018/07/09/upshot/sometimes-patients-simply-need-other-patients.html

The New Health Care
Sometimes Patients Simply Need Other Patients
Using the internet for a diagnosis is not recommended, but there’s great power in sharing stories.
By Aaron E. Carroll and Austin Frakt
The New York Times
July 9, 2018

Brain Support Network has a list of online groups for those coping with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.

 

Our 15th year of caregiver-only support group meetings

Tonight, Brain Support Network is starting its 15th year of holding caregiver-only support group meetings for those dealing with Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration. Thanks to all of our volunteers for making possible this milestone.

We meet nine times a year in San Mateo. Let us know if you’d like to be added to our support group meeting reminder email list.

Eleven things “they don’t tell you about dementia” (Dementia Journey)

When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order.  She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.

dementiajourney.org/2018/07/10/5589/

“Tips for taming caregiver stress” (Harvard)

Harvard Medical School sends out emails (health.harvard.edu) on various medical topics, mostly as a way to sell their books. I received an email this morning from Harvard on the topic of caregiver stress, describing these eight tips for “taming caregiver stress”:

* Relaxation response techniques and nurturing techniques are vital.

* Protect your own health.

* Join a support group to talk out frustrations with other people in your situation and to get helpful ideas.

* [Share] the work, instead of taking on everything yourself.

* When someone offers help, accept.

* Accept that circumstances change quickly.

* Accentuate your spiritual connectedness to something greater than yourself, be it to God, community, or the natural world.

* Remember that you’re doing this not solely out of obligation.

Harvard’s email also provides some useful resources. The email is copied below.

Harvard says:

“While some stress is inevitable, when your body
repeatedly encounters a set of physiological changes dubbed the stress response, trouble can brew. Stress may contribute to or exacerbate various health problems. But it’s possible to dismantle negative stress cycles [by knowing how to] identify your stress warning signs and…better manage stressful situations.”

Robin

—————————————–

Tips for taming caregiver stress
Harvard Medical School
July 7, 2018

Caring for others fulfills a basic social contract in ways that can
draw generations and individuals closer. Certainly, caring for an elderly parent or ailing spouse or partner is a worthy, often
satisfying pursuit. But it isn’t easy. If you’re among the  estimated 66 million Americans acting as caregivers for friends, family, or neighbors, you may often wrestle with stress as well as exhaustion, anger, guilt, grief, and other emotions.

Two-thirds of these caregivers are women. The task is especially hard on women in the so-called sandwich generation, who are simultaneously caring for children and older parents, quite possibly while working outside the home, too.

While you attend to the needs of others, your own sense of well-being may head south. Studies of men and women responsible for the long-term care of relatives show higher rates of illness, suppressed immune response, slower healing, and even earlier death among caregivers.  Additionally, research reveals that ongoing stress endured by older
adults caring for spouses with Alzheimer’s disease has a negative impact on the caregiver’s own mental functioning.

In order to give care to others, you need stress relief, support, and time for yourself and your family. Theses “Tips for taming caregiver stress” may help.

* Relaxation response techniques and nurturing techniques are vital. Practicing them often will enable you to feel calmer, happier, and better able to help others. If it’s too hard to find the time, consider getting extra help with some household tasks. The Eldercare Locator at www.eldercare.gov can help you find varied services for older adults and their families; it’s run by the Administration on Aging. The Rosalynn Carter Institute for Caregiving, at www.rosalynncarter.org, also provides recommendations for evidence-based caregiver support programs.

* Protect your own health. Research suggests that a caregiver’s immune function is often suppressed by the stress of caring for others. Boost your resistance by eating well, getting enough rest and exercise, and pursuing activities that bring you pleasure. Take advantage of regular respite care from professionals, family, and friends to give you much needed breaks.

* Join a support group to talk out frustrations with other people in your situation and to get helpful ideas. Some caregiver support groups are available online (such as a nationwide chat group run by AARP). Others are run by local hospitals, senior centers, and community groups.

[Robin’s note: I think these AARP caregiving forums are what Harvard describes as a “chat group” —
https://community.aarp.org/t5/Caregiving/ct-p/Caregiving ]

* A blend of assertiveness and cognitive restructuring skills can help you share the work, instead of taking on everything yourself. Spell out to other family members what needs to be done and what sort of help would be best. If no one offers help, ask for it. Linking those who can lend a hand has gotten much easier with new websites and apps that help friends, family, and communities coordinate care. Another example of a helpful site is CaringBridge (www.caringbridge.org).

* When someone offers help, accept. Keep handy a list of small tasks people can do, such as calling regularly, cooking an occasional dinner, shopping, and running errands. You can dole out tasks or ask people to check off what they can do.

* Accept that circumstances change quickly. Periodically reassess what you can offer and what assistance you need. If it’s getting too hard to fulfill certain needs, ask family members for help or consider other options, such as hiring paid caregivers to take on these tasks. Consult a geriatric care manager (www.aginglifecare.org) or social worker for help; your local council on aging or visiting nurse association should be able to help you find one. If necessary, consider another living arrangement that would help you meet your needs and those of your loved one.

* Accentuate your spiritual connectedness to something greater than yourself, be it to God, community, or the natural world.

* Remember that you’re doing this not solely out of obligation.
Focusing on the love you hold for your loved one can help dial back stress when things become frustrating and overwhelming.

 

Australian pop duo The Veronicas – mother with LBD and PSP

Australian pop duo The Veronicas were recently named ambassadors for Dementia Australia, after putting their music on hold last year to spend more time with their mother.  After four years of misdiagnoses, their mother was diagnosed with Lewy Body Dementia (LBD) and progressive supranuclear palsy (PSP). Their goal is to use their platform and their mother’s story to break down the stigma and shame surrounding dementia, and to build a social movement to advance community awareness.

Check out the article about The Veronicas here:

www.dailymail.co.uk/tvshowbiz/article-5892653/The-Veronicas-discuss-helping-mother-cope-dementia.html

“How to bounce back from anything. Resilience can be learned.” (Healthy Living)

Someone in one of our local support groups shared this article about resilience with me recently. It applies to those coping with a neurological diagnosis.

The article addresses the four “simple skills” of super-resilient people:

* No matter what, choose to be a survivor.
* View every single setback as an opportunity.
* Go ahead and dote on yourself a bit.
* Don’t go it alone.

Robin
——————–

How to Bounce Back from Anything
Resilience can be learned: Here are the secrets of people who hang tough in hard times.
by Jancee Dunn

Healthy Living Magazine
Spring 2018

Why is it that some people can rebound from a difficult event, but others never quite seem to get their mojo back? While it’s true that resilience comes more easily to some of us, the good news is that anybody can learn to be more emotionally hardy. Super-resilient people, it turns out, do a few specific things right — and these are simple skills we can all pick up.

Secret No. 1
No Matter What, Choose to be a Survivor

When we face bad news, it’s hard not to jump to extreme conclusions. (“I’ll never work again!” “It’s definitely a tumor!”) But resilient people steer clear of this kind of catastrophic thinking, which ups stress levels, blocks purposeful action, and leads to a downward spiral. Instead, do what Nora Ephron recommended: “Be the heroine of your life, not the victim.” You can’t always control what happens to you — but you can control your attitude and actions.

Secret No. 2
View Every Single Setback as an Opportunity

The most resilient people realize that a setback such as a layoff, health scare, or conflict at home can be a challenge and a chance to grow, notes New York psychotherapist Jeffery R. Rubin, PhD, author of “The Art of Flourishing.” “Success is often an obstacle to learning,” he says. “When everything is going well, we continue to do what worked, so we don’t learn much. But a crisis can lead to a breakthrough.”

Secret No. 3
Go Ahead and Dote on Yourself a Bit

Physical health is a pillar of resilience. Before and during a crisis, it’s essential to have healthy habits like getting enough sleep, eating well, exercising, and avoiding mood changers like alcohol and other vices. Beyond that, yoga may be especially beneficial. In a 2012 study from Harvard Medical School, students who practiced yoga for 10 weeks were better able to calm themselves when upset compared with those who did a standard gym regimen. “Yoga promotes self-regulation, which is the ability to step back from a situation and not be reactive,” says Jessica J. Noggle, PhD, one of the researchers.

Secret No. 4
Don’t Go It Alone

Research has shown that socially isolated people have a more difficult time recovering from life’s challenges. “The more you hide your problem, the more power it has over you,” explains Bobbi Emel, a psychotherapist in Palo Alto, California. “Being around other people reminds you of who you are; they reflect that you’re still that same person.” That interconnection gives us strength to handle challenges by helping us develop a sense of belonging and purpose — which, when it comes to handling tough stuff, may be the most important component of all.

 

July 2018, Parkinson’s Support Group Meetings, Northern and Central California

Here’s a list of Parkinson’s support group meetings in Northern California and Central California in July 2018, where the guest speakers may be of interest to those in the Brain Support Network community:

Lodi
Monday, 7/2, 10am-noon
Guest Speaker:  Michelle Rosado, Disability Resource Aging for Independent Living (DRAIL), San Joaquin County
Topic:  Resources and device to help make daily living easier for those with challenges
RSVP?:  No.

San Andreas (Calaveras County)
Tuesday, 7/3, 10am-noon (guest speaker usually starts at 10:30am)
Guest Speaker:  Kenneth Renwick, MD, family physician, Calaveras County
Topic:  Medical marijuana for people with PD
RSVP?:  No.

Pacific Grove (Monterey County)
Tuesday, 7/10, 3-4:30pm
Guest Speaker:  Consuelo Juarez, patient advocate, Rare Patient Voice
RSVP?:  No.

Menlo Park/Little House
Wednesday, 7/11, 2-3:30pm
Guest Speaker:  Nikki Hochhauser, Home Instead Senior Care, Sunnyvale (servicing Belmont to Cupertino)
Topics:  Senior care options for those with PD, suggestions for hiring an agency or private caregivers, avoiding elder scams, and the 70/40 conversation rules
RSVP?:  No.

Sonoma/Vintage House
Thursday, 7/12, 10-11am
Guest Speaker:  Marie Held, SLP, speech therapist, Brookdale Home Health
Topic:  Speech therapy services for managing PD
RSVP?:  No.

Clovis (Greater Fresno)
Saturday, 7/14, 10am-noon
Discussion Topic:  Alternative treatments for PD
RSVP?:  No.

Lincoln
Tuesday, 7/17, 10-11am
Guest Speaker:  Rock Steady Boxing Roseville representative
RSVP?:  No.

Elk Grove
Wednesday, 7/18, 10-11:30am
Guest Speaker:  Deborah Gonzalez, speech therapist, Dignity Health
Topics:  Voice projection and swallowing
RSVP?:  No.

Merced
Thursday, 7/19, 10am-noon
Guest Speaker:  Kelly Lowe, therapeutic massage therapist, Merced
Topic:  Pressure points
RSVP?:  No.

Sacramento/Arden Arcade
Thursday, 7/19, 10am-noon
Guest Speaker:  Karen Low, SLP, speech therapist, Kaiser
Topics:  Voice projection and swallowing
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 7/21, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Lena Hart, Alexander Technique instructor
Topic:  Redefining and finding balance with PD
RSVP?:  No.

Find meeting location details on the Stanford Parkinson’s Outreach website.

 

Spousal Caregiver Job Description (humorous)

This is a humorous job description for a spousal caregiver:

thecaregiverspace.org/spousal-caregiver-job-description/

Spousal Caregiver Job Description
by Allison Breininger (Guest Author)
Jun 8, 2018
The Caregiver Space

The preferred degrees and certifications include, but are not limited to:
Licensed Social Worker
Psychiatrist
Psychologist
Chaplain
Healing Touch Practitioner
Essential Oil Consultant
Geneticist
Urologist
Oncologist
Dermatologist
Hematologist
Orthopedist
Ear/Nose/Throat Specialist
Cardiologist
Radiologist
Pulmonologist
Anesthesiologist
Ophthalmologist
Pharmacist
Nurse
EMT
Surgeon
Dietician
Physical Therapist
Personal Trainer
Wound Care Specialist
Insurance Specialist
Life Coach
Researcher
Professional Organizer
Fundraiser
Zen Master
Public Relations Guru

As the article says, “Please note: the ideal candidate for this position would have not one, but all of the above certifications.”

Check it out….

Robin