Living with a Neurological Condition Archives - Page 23 of 73

On Oprah Winfrey’s TV channel, she has a show called “SuperSoulSunday.” Earlier this month, she interviewed BJ Miller, MD, a hospice and palliative care specialist at UCSF. Dr. Miller shares “his revelations about a subject that is often taboo in our culture — the experience of death.” You can watch the interview online at:

www.oprah.com/own-super-soul-sunday/BJ-Miller

If you’d like to read more about Dr. Miller, hospice specialist and triple amputee, check out Brain Support Network’s blog post from January 2017:

www.brainsupportnetwork.org/one-mans-quest-to-change-the-way-we-die-new-york-times/

The interview with Dr. Miller is followed by a short film about the late Paul Kalanithi, MD, who wrote the best selling book “When Breath Becomes Air.”

Deb, one of our local support group members, listened to the interview and shared some highlights with us. Deb’s husband recently passed away with Lewy body dementia.

Robin

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Deb’s Notes from

Guest: BJ Miller
Season 7 Episode 709
Aired on 05/07/2017
OWN SuperSoulSunday

Here are my notes from a fascinating episode of the OWN (Oprah Winfrey Network) show “Super Soul Sunday.” Oprah interviewed palliative care and hospice physician, Dr. B.J. Miller.

1. Life is not avoiding suffering, but finding meaning.

2. Dying people are still living. There is a continuity of existence such that death is part of living.

3. Being a human being is hard. It helps to have something to push against to get us to rise to the challenge. (Miller suffered an accident as a teenager and is a triple amputee.)

4. The fact that we all die makes life precious. We realize that time is short and that delays have consequences.

5. We should see the silver linings in our lives every day.

6. In order to die well and be at peace with ourselves and have no regrets, we should live well. Every day we should do a self-check: 1) Am I doing something I really care about?; 2) Am I doing what I really want to do?; 3) Did I tell my loved ones that I love them?

7. We all have these negative feelings about death and losing control. Yet given the choice to live forever, most people would not choose it. So death is not so negative. And you can get to the point that you even welcome death.

8. One of the best things about living is being able to give and receive love.

What is a patient advocate and how can an advocate help?

Date May 21, 2017

Posted by BSN Support Staff

What is a patient advocate and how can an advocate help?

I occasionally read the “Nurse Advocate,” Anne Llewellyn, who has a LinkedIn Pulse site. In a recent post, she explains what a patient advocate is and how an advocate can help. The author says: “Everyone needs an advocate when they are thrust into the complex word of health care.” A physician made the following comment on the blog post: “The system is difficult to navigate for those with healthcare experience, yet alone the layperson. Healthcare itself is not a safe place.”

The author says: “Keep in mind advocates do not provide hands-on care, but rather do research, meet with your health care team to understand the plan of care to ensure it meets your individual needs. Advocates work on your behalf to break down barriers that exist in our complex system and ensure you are safe and have the information and resources to navigate the system and make decisions to address your individual needs. They ensure you have a voice in your care and are at the center of the health care system.”

There are several kinds of advocates – Independent Patient Advocates, Hospital Advocates, Billing Advocates, and Housing Advocates. Although the author says that there are many ways to find an advocate, the only method suggested in the article is a web search.

Here’s a link to the article:

www.linkedin.com/pulse/everyone-needs-advocate-when-thrust-complex-world-health-llewellyn

Everyone needs an advocate when they are thrust into the complex world of health care
Published on May 16, 2017
by Anne Llewellyn, nurse advocate
LinkedIn Pulse

“Relaxation Techniques for Stress Relief” (HelpGuide.org)

Date May 21, 2017

Posted by BSN Support Staff

“Relaxation Techniques for Stress Relief” (HelpGuide.org)

Here’s another useful article from the HelpGuide.org, a website that focuses on mental, emotional, and social health. This one is about relaxation techniques for stress relief. As the article points out: “There is no single relaxation technique that is best for everyone.”

Techniques addressed include: deep breathing, progressive muscle relaxation, mindfulness meditation, body scan meditation, rhythmic exercise, visualization, yoga, tai chi, and even self-massage. Many of these techniques are explored in a mindfulness-based stress reduction (MBSR) class. These classes are held at medical centers, health clinics, senior centers, and many other places. I highly recommend taking a class to find a technique that works for you!

Here’s a link to the article:

www.helpguide.org/articles/stress/relaxation-techniques-for-stress-relief.htm

Relaxation Techniques for Stress Relief: Using the Power of the Relaxation Response to Reduce Stress and Boost Mood
HelpGuide.org
By Lawrence Robinson, Robert Segal, MA, Jeanne Segal, PhD, and Melinda Smith, MA
April 2017

“What does it mean to be resilient? How to stay strong, no matter how tough it gets”

Date May 21, 2017

Posted by BSN Support Staff

“What does it mean to be resilient? How to stay strong, no matter how tough it gets”

Though this article is written for a caregiver website, the suggestions for resilience apply to us all.

The strategy described includes these steps:
* assess the situation
* reframe the situation
* set boundaries
* accept your own abilities
* find support
* remember why you’re here

Here’s a link to the article:

thecaregiverspace.org/what-does-it-mean-to-be-resilient/

What does it mean to be resilient?
by Cori Carl
Mar 3, 2017
The Caregiver Space

PREPARE website – another tool for advance care planning

Date May 19, 2017

Posted by BSN Support Staff

PREPARE website – another tool for advance care planning

At the recent American Geriatrics Society annual scientific meeting, some interesting research about advance care planning was presented. Reading about that research led me to a simple website called PREPARE at prepareforyourcare.org. The founder of this effort is a Rebecca Sudore, MD, UCSF geriatrician and palliative care specialist.

PREPARE addresses five categories as a means to develop a personalized action plan:
* choosing a medical decision maker
* deciding what matters most in life
* choosing flexibility for your decision maker
* telling others about your wishes
* asking doctors the right questions

The website’s text is large, with lots of graphics. The website “speaks” the content, which is great for those with visual impairments but, fortunately, can be turned off. The site is available in both English and Spanish. According to a Medscape article about the site, the language used is at a fifth-grade level.

PREPARE has created easy-to-use advance health care directives for each state. Here’s a link to the California form:

prepareforyourcare.org/assets/img/PREPARE_Advance_Directive_CA_EN.pdf

If you haven’t made your advance care plans, this is another great tool.

For those interested, Dr. Sudore discusses her research in a blog post and podcast on the GeriPal website:

www.geripal.org/2017/05/rebecca-sudore-on-advance-care-planning.html