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

 

“Persisting in the Face of Caregiver Difficulties” – Webinar Notes

This past Tuesday, Janet Edmunson (janetedmunson.com), caregiver to her late husband Charles, hosted another terrific webinar on “Persisting in the Face of Caregiver Difficulties.”  She focused on how mounting frustrations of caregiving can chip away at optimism and energy.  By being aware of our negative thinking and re-framing our perspective of a given situation so that we see the positive, we can avoid a spiral of persistent feelings of being dumped on, overwhelmed and depressed.

There is research showing that building strong positive thinking habits makes people more emotionally resilient.  It even has a name:  post-traumatic growth.  It is the optimism that carries us through a difficult period, resulting in strength of spirit, more confidence and  persistence.

Brain Support Network volunteer Denise Dagan listened to the webinar and has shared her notes below.  Her notes include both Janet’s presentation and the question-and-answer period.

Denise says:  “My notes are filled with steps that, taken daily, could make you a more emotionally resilient, positive (hopefully more healthy) caregiver.  Try some of them and see what happens.  Heck! try all of them!”

Denise’s notes and a link to the archived recording are below.
Robin
————————–
Register to watch a recording of the webinar here:
https://attendee.gotowebinar.com/recording/8497359402706827267

Notes by Denise Dagan, Brain Support Network volunteer

Persisting in the Face of Caregiver Difficulties
Webinar by Janet Edmunson
June 5, 2018

Was it a bad day or a bad 5 minutes you milked all day?

Get rid of ANTS = Automatic Negative Thoughts

They pop into our head all day.  We can’t control that, but we can control whether we act appropriately when faced with ANTS.  It can be difficult to gain perspective.  Negativity tends to stick with us while positivity is like teflon and slips off us.

Negative thinking is appropriate and rational:  When your loved one takes a turn for the worse.  It is appropriate to feel negative and sad in this situation as you have no or little control over the outcome.

Other negative thinking is irrational:  “I’ll never be happy again because of my caregiving burden.”  That is over the top.  You know that statement is unreasonable because steps can be taken to make that statement is untrue.  If you really think about it you can probably think of a time when you have had a belly laugh, even in the midst of your caregiving burden.  In that moment you were happy.

Keep asking yourself, “Is there another perspective?”

1. Catch yourself.  Is your thinking rational or irrational?

2. Check.  Is it true?  Can I make reasonable changes or get help to make it untrue?

3. Challenge.  Are there healthier ways to respond than purely emotionally?  Ask yourself what advice you would give to a friend in a similar situation.  Is the situation truly catastrophic?  Have I exaggerated how bad things really are?  Have I blamed the wrong person.  Have I overreacted?

Thought Worksheet:
Event or Situation _____________ (fill in your situation)
Feelings _________________
(fill in your feelings.  Are they over the top or reasonable?)
Automatic thought:  (fill in your automatic thoughts about the situation)
Realistic thought:  (fill in more realistic thoughts about the situation)

Example:
Flat Tire
Bad things always happen to me.  This is the worst day ever.
Realistically, its just a flat, it will take time, but I will get through it.

Example:
On top of caring for spouse, your mother has a new diagnosis of Alzheimer’s
Feelings of despair, can’t handle another, overwhelmed, sad
Automatic thought: This is horrible and way more than I can handle
Realistic thought:  My feelings are real.  I must accept the situation and begin to find support and a path forward.

Energy flows in the direction of your attention.
Where is your attention?  How do you determine if your thinking is optimistic or pessimistic?
Pessimistic thinking: Its all my fault.  It’s going to affect my whole future.  Bad things always happen to me.  I may as well stop trying, I won’t be successful.
Optimistic thinking: I know why this happened and I can correct it.  It doesn’t have to happen again.  I just had a bad day.  This bad thing is temporary and only one part of my life.  I am confident I could change the situation with persistence and a better strategy.

People who are pessimistic are more likely to give up, blame themselves when things go wrong, feel worthless and give up.  They tend to give up early, find and focus on the negative, predict failure and negative outcomes, draw negative conclusions without seeking information and solutions

People who are optimistic are more likely to persist in the face of frustrations and tend to see failure as a normal part of life.  They tend to persist over time despite difficulties and setbacks, use positive results to build confidence, predict success based on a realistic plan, seek solutions and try multiple approaches and seek every positive aspect of a situation.

Explanatory Styles:

Permanence
Pervasiveness Personal
Pessimist: See the situation as Permanent
See the problem as Universal
Internalize the cause

Optimistic:  See the situation as Temporary
See the problem as Situation specific
See the cause as External

Examples of pessimistic self talk:  Poor me.  I can’t do this anymore.  I’m overwhelmed.  I’m not capable of doing things I never had to do before.

Positive self talk is realizing you are in a learning curve but you are perfectly capable and will figure it out – even if you need to get help.

Who fares best during adversity?
Some crumble and grumble
Others bounce back, grow and become stronger – but how?

In the book, “Positivity,” author Barbara Frederickson says those who bounce back learn to put the brakes on negative thinking and focus on the positive to see us through difficult or frustrating experiences.

Post traumatic growth = optimism that carries us through a difficult period, resulting in strength of spirit, more confidence and  persistence.  It is facilitated by relating to others, using your personal strength, perseverance and persistence to carry you through.

Which way is your spiral going? Toward the positive or toward the negative?
If your spiral is heading toward the negative, it will drain your energy.  If you bring in positivity, even a bit at a time, you can enhance your energy and overall wellbeing.  It is the opposite of letting each frustration drain your energy and turn you toward a negative emotional spiral.

How to tune into positivity:
1. Tune into your thoughts and feelings.  Your enemy is negativity and your response to it.  What are you telling yourself is making you feel overwhelmed.  Where there is a negative there is always a positive.  Negative and positive can be present together in one’s feelings.

Examples:
When caregiving is overwhelming and you want to give up.  Be thankful your loved one is still with you.
When friends pull away, be thankful for the new, supportive people who have arrived to help.
When your loved one is incontinent, be thankful your loved one isn’t retaining urine, which can be life threatening.

2. Come up with a mantra to counteract negative self talk:
Remind yourself you are not helpless
It’s only a setback.  I will figure it out.
I will get it done and it will be fun/fine.

3. Have realistic expectations.
Bad things sometimes come in more than threes.  Even if they come in sixes, they happen and you just have to get through each challenge.  You will build tremendous strength, confidence and post-traumatic growth as a result.

She told a story about getting robbed in the ER while napping by her husband who was having a crisis.  You get through it.

Adopt positivity habits.  They take practice/honing.

1. Grow your gratitude.  Be thankful for everything and everyone.  It builds happiness.  Keep a gratitude journal each evening.  Ask yourself what three marvelous things happened each day.  It can combat depression.

2. Savor the good.  Once you start to realize those marvelous things that actually do happen each day, you will start noticing them when they happen.  Savor them in the moment.

3. Monitor your mood.  When you are sad you stop doing things you like to do that make you happy.  Make a list of what you love and start doing them when you have time.  Read a book, call a friend, etc.  Be proactive in improving your mood.

4. Value your worth.  Negativity lies in devaluing our worth.  Reflect on the best version of yourself and the legacy you are leaving by being a caregiver to someone you love.  Stop beating yourself up and criticizing yourself.

5. Connect with others.  We are wired to be social.  It makes us feel safe, secure, happy, and soothed.  Negativity separates us from those we love.  Make a list of your social support people and be proactive in connecting with them.  Invite them to you, if you cannot get out to them.  Make new friends going through similar experiences (support groups, exercise groups, etc.)

The most essential factor is persistence – the determination never to allow your energy or enthusiasm to be dampened by the discouragement that ,just inevitably come. – James Whitcomb Riley

Your Action Plan – What ritual will you adopt?

Reframe your negative thoughts.  Shift your focus from the negative to the positive.

Questions and Answers

Q.  Even when aide is present caregiver must still intervene because aide can’t deal with autistic daughter.  So frustrating.
A.  This is your reality and a rational situation with appropriate negative feelings.  To get past this you must take action.  Begin by communicating/educating the aide about dealing with the daughter.  You can bring in an outside educator to teach the aide about autism.  Look for some positives (humor, when things do go smoothly as examples to share with the aide).

Q. How do you allow yourself as a caregiver to make time for yourself when you have trouble taking care of household tasks.
A. You will feel guilty, but you need to let your nervous system rest in the interest of your own health.  Try to squeeze in a few pages of a book while you are on the toilet or in the bath.

We can’t take time for ourselves when we are the only caregiver 24/7.  That is when you need to enlist the help of friends, family, neighbors, fellow church members or in-home hired help.  If you have the means, hire a house cleaning service and yard service or enlist friends, family, etc. to do those chores so you can have some respite.

Nine brain donations in nine days! Amazing generosity towards medical research.

Brain Support Network has helped nine families succeed in donating a loved one’s brain….in nine days.  That’s an amazing display of generosity towards medical research from individuals and their families.  We thank every family and party involved.  That’s a record for us!

If you are interested in making arrangements for your brain donation or a family member’s brain donation, we encourage you to do so once hospice is involved.  Or once there’s been a major hospitalization.

See:
www.brainsupportnetwork.org/brain-donation

Robin

 

Cancelled – “What If It’s NOT Parkinson’s?” Webinar on Tuesday, June 12th

Update on 6/11/18:  Unfortunately this webinar is now cancelled.

Brain Support Network group member Steven Russell shared with me today info on an upcoming webinar, which will give an overview of all four of the atypical parkinsonism disorders — MSA, LBD, PSP, and CBD.  Details are:

What If It’s NOT Parkinson’s?

In this webinar, Dr. Mihaela Alexander, Colorado Neurodiagnostics, will discuss atypical parkinsonisms such as multiple system atrophy and Lewy body dementia, among others (PSP, CBD). Dr. Alexander will cover what we know about these conditions and what treatments are available for each condition.

Tuesday, June 12
10-11am CA time

Organizer:
Parkinson Association of the Rockies, Denver, parkinsonrockies.org

Registration:
attendee.gotowebinar.com/register/3367947443153312002

General Information:  (same as what is above)
parkinsonrockies.org/programs-services/event-calendar/276/2018-06-12/what-if-it-s-not-parkinson-s-webinar