The Shaky Times
-- Online Edition --
March 2020
Here's what's below:
March General Meeting Speaker

March Tri-Valley Meeting

The Survey Says - Part 6

Aware in Care

Exercise for Parkinson's

Upcoming Events of Interest

Information and Resources Library

Donations

Healthy and Yummy Sweet Treat

Exercise and Activity Classes

Meetings, Announcements, and How to Contact Us
March General Meeting Speakers

Saturday, March 21, 2020 - 9 am-noon
Grace Presbyterian Church, Walnut Creek

Presentation 10:45-11:10 am: In-Home Oral Hygiene
Speaker: Bonnie Slatkin, RDHAP

Bonnie Slatkin has been a registered dental hygienist for over 25 years; offering mobile dental hygiene services for 6+ years throughout the East Bay.

Presentation 11:15-11:50 am: Hunting Joy in Challenging Times
Speaker: Heather Kennedy

Heather Kennedy is a writer and advocate known for her unique presentations and films about living with Parkinson’s. She has collaborated with organizations such as Davis Phinney Foundation, The World Parkinson’s Congress, Parkinson’s Life, EPDA, APDA, Parkinson’s Foundation, Radio Parkies and Spotlight YOPD.

March Tri-Valley Speaker

Saturday, March 14, 2020 - 10 am-noon
Pleasanton Senior Center

Presentation: Taking ON Parkinson's: Current Therapies, Diet, SIBO (small intestinal bacteria growth) and Use of Rytary
Speaker: Dr. Diana Blum

Dr. Blum is a board-certified Neurologist. She has extensive experience in diagnosing and caring for patients with all types of neurological conditions. Her current main area of focus is the diagnosis and management of Parkinson's Disease patients. She is a recipient of both the Patient's Choice Award (4 years in a row) and the Compassionate Doctor's Recognition. Dr. Diana Blum earned her MD at the University of Chicago, Pritzker School of Medicine and completed her neurology residency at Stanford University. As a Bay Area native, she graduated Summa Cum Laude from UC Davis and is fluent in both English and Russian.   
          
The Survey Says...Part 6
In the category titled “ Entertainment ”, about 20% of respondents replied they did not read and about 50% were avid readers.  We discovered that 42% of our responders had hobbies in which they become engrossed. Examples are playing an instrument, engaging in genealogy, writing, playing games (bridge, Ma Jong, dominos etc.)

58% of our responders listened to music as a way of relaxing.

68% of us use computers for entertainment. I play bridge (Bridge Baron). Sometimes, your partner is pretty thick.

Giving back to the community can be the most satisfying and rewarding activity. We need all the help we can get at PNMD. I have been trying to promote the idea of “ownership”. That is along the Kennedy lines of “Ask not what your country can do for you ….”

79% of our responders reported that they had good appetites . What little literature I found claimed loss of appetite is common with those with PD. What can I say?

We found that 14% of respondents did not eat out and 77% ate out 1-3 times a week and the remainder ate out more often. Restaurant food is very salty and is best avoided.
 
I was very surprised that ALL OF US CLAIMED TO HAVE RETAINED THEIR SENSE OF HUMOR . Some of us cleverly disguise this with a wooden expression. Whatever the reason, this would seem to be a positive result.

Our results showed that 42% of us did not have grab bars in our showers. I guess that it is not my job to be a scold, but this is NUTS.  Falls can be life-changing so why take the risk when you can have it fixed for a few dollars. One member told us that he carries one of the suction-cup type of grab bar when he travels. ($10 at Amazon).

Submitted by Derek Ransley, PhD, Leader of the Men's Support Group

Aware In Care
Exercise for Parkinson's
Exercise is important for maintaining health for everyone. For people with Parkinson’s, exercise can improve quality and may help alleviate some of the most difficult motor and non-motor symptoms of the disease. Overall, exercise can benefit people with Parkinson’s in the following important ways:

Motor Symptom Management:
Research has shown that exercise can improve flexibility, balance, coordination, agility, gait, and strength.

Non-Motor Symptom Management:
Exercise may positively impact depression, apathy, cognition, and sleep difficulties.

Delay Mobility Decline:
Studies suggest that exercise may help delay some of the common symptoms of the disease.

A Word on Parkinson’s Exercise Research
Many studies suggest that exercise may improve how the brain uses and protects dopamine. Researchers are also looking at how specific types of movements may help counteract some of the motor symptoms that are common in Parkinson’s. For example, tai chi is a great activity for improving balance whereas boxing can help with quickness, planning and sequencing.
A Word on Safety
Exercise is essential for people with Parkinson’s, just like medicine. But balance problems and other motor symptoms can increase the risk of falling. Here are some things to consider when starting or engaging in an exercise routine:

Talk to Your Health Care Provider
Whether it’s your neurologist, physician or physical therapist, make sure you’ve talked to a health care provider about your exercise program, especially if you’re considering a new physical activity. Also, if you’re experiencing new symptoms or worsening symptoms, talk to your health care provider to make sure your exercise routine is safe.

Time Your Medications
Many people with Parkinson’s have “on times” when their medications are most effective at alleviating symptoms. Exercising during on times can be more effective and can help reduce the risk of falling and other problems associated with Parkinson’s. Talk to your health care provider about medication timing for optimal exercise times.

Stay Hydrated
Staying hydrated with water or sports drinks is an important part of an exercise program. For people with Parkinson’s, staying hydrated can also help with low blood pressure and dizziness and may help reduce the risk of falling.

Be Mindful Of Symptoms
Both motor and non-motor symptoms can increase fall risk. Motor symptoms that are associated with a greater fall risk include slowness, rigidity, stooped posture, freezing, shuffling gait, dyskinesias, falling backwards and a narrow base of support. Non-motor symptoms, such as sleep problems that cause fatigue and cognitive impairment can also increase the risk of injury. Be mindful of your symptoms and check in with your health care provider if you’re experiencing new or worsening symptoms.

Recommendations for Exercise for Parkinson’s

Recommendations for Exercise Intensity and Duration

Any exercise is better than none. Parkinson’s patients enrolled in exercise programs for longer than six months, regardless of intensity, have shown significant gains in function. However, greater intensity reaps greater benefits for people with Parkinson’s. That’s why experts recommend that people with Parkinson’s exercise with as much intensity as is safely possible for as long as possible. The exercise sessions should be challenging, requiring focus, effort and full attention. For example, walking on a treadmill is good, but also try walking quickly outside with distractions, obstacles and changes in terrain. People with Parkinson’s should aim for the following for how much and when to exercise:
  • Begin training in the early stages of Parkinson’s
  • Train most days of the week, for at least one hour
  • Add mental and physical challenges when appropriate and safe
  • Train at higher intensity levels, meaning you can still talk while training but in short bursts

Recommendations for Types of Exercises

Above all, do what you enjoy! Remember any exercise is beneficial. When you engage in activities that make you feel safe and confident, exercise can be fun as well as healthy. For people with Parkinson’s, aerobic activities combined with movements that address specific symptoms can help you practice and maintain everyday motor functions that directly impact quality of life. Researchers and exercise therapists often focus on the following types of movements:
  • Big movements
  • Full, functional, sequential movements
  • Self-initiated/self-paced exercises
  • Planning and decision-making movements
  • Reciprocal arm and leg movements
  • Torso rotations
  • Erect posture exercises
  • Controlled slow and quick movements
  • Balance and stability exercises
  • Strengthening of extensor muscles and stretching of flexor muscles
  • Cardiovascular conditioning
  • Dual task exercises (performing multiple tasks simultaneously) that include both physical and cognitive tasks
  • Exercises that improve sensorimotor awareness
  • Exercises that involve the whole body
  • Loud voices
  • Progressively increasing the complexity of movements by varying contexts

Resource: Brian Grant Foundation; https://briangrant.org/exercise-for-parkinsons/
Upcoming Events of Interest
Parkinson’s Foundation Online “Does Nutrition Play a Role in PD Symptoms or Progression”
Tuesday, March 17, 2020 1pm ET

Let's Talk About It: Symptoms Beneath the Surface
Mark Powell Event Center, Sacramento; hosted by the Parkinson's Foundation
For more information, contact sosborne@parkinson.org or www.parkinson.org

Parkinson's Foundation Online Care Partners Summit
Saturday, May 16, 2020

Moving Day - San Francisco
Saturday, May 9, 2020  
Information and Resources Library
My name is Rick Stevens. I am the Librarian for Parkinson Network of Mount Diablo (PNMD). Like many of you, I have a story to tell. I was diagnosed with Parkinson’s Disease nearly two years ago. That was the original kick in the pants that spurred my interest. The second kick was my grandson. When I shared the diagnosis with my family, I was forced to confront it. My grandson Andrew turned to the local library. There he found Lucky Man , Michael J. Fox’s autobiographical account of his early onset PD. He recognized Fox from Back to the Future . He read the book, then loaned it to me. I devoured it, wondering why this icon referred to himself as a “lucky man.” As Andrew and I discussed it, I learned to accept my PD as a starting point in this phase of my life. I learned I was indeed “lucky” in so many ways.
About six months afterwards, my granddaughter Grace asked if she could do a video documentary on me. It was for her college class. Of course, I said yes. The focus was on my PD and how I felt about it and different aspects of my life. We shot the video portion in one sitting. She then did research, wove in family photos, and produced a YouTube video called “I Too am a Lucky Man.” I was totally out of the closet after that! Yet it has been the healthiest choice I could have made, sharing my story, with my family there to support me.

Months later I found the Men’s support group here at PNMD. I ran into a friend at a dance and exercise class who recommended it. I immediately felt welcomed and safe in the group. There was no pretense. I listened to the stories of others in the group. Some commonalities, but typically told from the heart – often unique. I learned, and I felt validated as I listened. After several months, I decided I would contribute to this volunteer outfit. Organizations like PNMD do not exist in a vacuum. I asked myself, “If not me, then who?”

What called me to this work?

The mission of the Library is to serve both those with PD and their Caregivers. We also look to educate community members who have an interest in what we do, why, and how we do it. We don’t pretend to be comprehensive. We have larger organizations for that: Parkinson’s Foundation ; Michael J. Fox Foundation and others. However, our quest for answers needs to be personal. We construct answers and purpose through our acts of inquiry.
Think globally, but act locally
Why then have a local resource on PD? First, all learning is local – it is about how we go about educating ourselves. Second, one never stops learning. An active mind is the best defense against cognitive decline. A library is a tangible venture into determining what is relevant to our inquiry. Indeed, people with PD have many questions. It is the quest that matters. I am certain that if there were a pill that instantly cured our PD, we would take it. But until that happens, we strive to learn as much as we can to manage and potentially overcome PD.

Other resources
You can find Lucky Man by Michael J. Fox and other books in our lending library. You might want to check out Being Mortal by Atul Gawande; or Honey, I sold the Red Cadillac by Bob Wolf. In addition, we print and distribute current articles at every monthly meeting. They cover all aspects of Parkinson’s Disease. Soon we will be expanding our list of articles so that they are searchable on our website. Even if you miss a meeting, you can still read what interests you.

If you have an idea for a resource or book, email me at rickatron@gmail.com .

Submitted by Rick Stevens, February 2020
Donations
Arnold and Barbara Cohen
Linda Madden
Faye and Sandor Straus
Mashuri and Rahima Warren
Roger and Julia Kampsnider
Jay-Marie and Ron Garcia
Beth and Craig Donegan
Carol Penskar

Toba D. Simon in memory of Steve Simon

John and Rebecca Kunzman in memory of Ted Kunzman

In memory of Lance Gershen:

Art and Betsy Fowler
Kim and Stuart Weinstein
Mary Anne Winig
Debra Sternbach
Sarah Gershen
Martha Ann and Sandy Wishnev
Wendy and Stan Holcenberg
Bridget Waller and Hillendale Home Care
McGuireWoods
Mike and Josephine Sobel
Kathy and Ira Zankel
Alan Burckin
Linda Clar
Jerry and Andrea Shafer
Ronnie and Larry Wanetick
Judy Adler
Terrance and Linda Murray

Healthy and Yummy Sweet Treat

Gluten-free Almond Butter Chocolate Chip Cookies
Submitted by Jodi Barry, Yoga Teacher

Peanut butter cookies are my absolute favorite, but my usual go to recipes either have a ton of sugar or flour or both! I decided to try to find a recipe that would make these a little less sinful. This cookie turned out to be amazingly delicious without the guilt. Give them a try and feel free to tell me what you think….

Servings: 12 cookies

Ingredients:
  • 1 large egg
  • 1 cup almond butter (at room temperature or cold) 
o   Note, it is recommended to NOT use the oily stir type of almond butter, but I did with the addition of 2 tbsp. of Almond flour described below
  • ½ cup light or dark brown sugar, lightly packed.
o   Note, I used granulated Monk fruit sweetener as a natural sugar substitute.
  • 1 teaspoon baking soda
  • ½ teaspoon pure vanilla extract
  • 1 cup semi-sweet or dark chocolate chips

Instructions:
  1. Preheat oven to 350°F (177°C) and line a large baking sheet with parchment paper or silicone baking mat.
  2. In a medium bowl, whisk the egg until beaten. Mix in the almond butter, then the brown sugar, baking soda, and vanilla. If using oily stir type almond butter, be sure to mix well before measuring and then add 2 tablespoons of almond flour or gluten-free flour.
  3. Mix everything together very well. Depending how thick and/or cold your almond butter is, you’ll have to use some arm muscles. Fold in the chocolate chips until combined.
  4. Scoop the dough, about 1.5 tablespoons each, onto prepared baking sheet. If you find the cookie dough balls are a little oily from your almond butter– mine usually are– blot each with a paper towel. If desired, press a couple chocolate chips onto the tops of each cookie dough mound.
  5. Bake for 10 minutes. The cookies will look very soft– that’s ok! For crispier cookies, bake up to 11-12 minutes.
  6. Allow the cookies to cool for 10 minutes on the baking sheet before transferring to a wire rack to cool completely.
  7. EAT AND ENJOY!!!
  8. Cover leftover cookies (HA! HA! HA!) tightly and store at room temperature for up to 7 days.

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Parkinson's Wellness Recovery, Walnut Creek
Monday, 9:30-10:45 AM, Petra Fibrichova, 510-520-4523
Yoga, Walnut Creek
Thursday, 9:30-10:45 AM, Jodi Barry, 415-328-4123
Dance Moves Me
Tuesday, 1:00-2:30 PM, Debbie Sternback, 510-653-8362
Alexander Technique
Friday, 11:00 AM-Noon, Lena Hart, 917-806-7929
Tremble Clefs
Thursday, 1:30-3:00 PM, April Wakeman, 925-276-0463
Rock Steady Boxing, Danville
Tues. & Thur., 12:30 - 2 PM, Daniel Burkhardt, 925-471-5432
Rock Steady Boxing, Concord
Classes Mon. - Sat., Call for times, Lori Santo, 925-785-1272

Please contact activity instructor for further details and fees.
Announcements, Meetings and How to Reach Us
Pianist Wanted for Tremble Clefs

Parkinsons Network of Mt. Diablo (PNMD) is looking for a pianist to accompany their musical group (the Tremble Clefs). They meet weekly (Thursdays 1:30 – 3:00) at Lafayette-Orinda Presbyterian Church at 49 Knox Drive, Lafayette.

For more information contact April Wakeman adwakeman@yahoo.com

PNMD is a 501 ©3 Non-Profit all Volunteer organization.

Questions? Contact Amy Van Voorhis at pnmdtreas@astound.net

Is There Treasure In Your Driveway?

You can stop paying insurance and registration—and get a tax deduction.
Donate your car, truck or boat to PNMD . Just call: 877-999-8322

Important: Be sure to tell the operator that you wish to donate your car to Parkinson Network of Mount Diablo. Or just use this link for our dedicated online donation form:
If you have any questions, call the vehicle donation program at 877-999 8322.
Or contact Abraham Raja at anraja@att.net
     General Meeting Information:


Board Meeting:
First Monday of each month, 10:15 a.m.. Hillside Covenant Church, 2060 Magnolia Way, Walnut Creek. Open to all members.

General Support Group Meeting:
The Parkinson Network of Mt. Diablo Support Group meets on the third Saturday of every month, from 9:00 a.m. to noon at Grace Presbyterian Church, 2100 Tice Valley Blvd., Walnut Creek. Moderator: Bill Clinch. There is no charge, but annual membership is $50 per year per family.

9:00 to 10:15 a.m. – Three concurrent Support Group meetings:

Men with Parkinson’s Disease meet in the Fireside Room at Grace Church. Contact person is Derek Ransley, dransley@comcast.net, 925-944-0162.

Women with Parkinson’s Disease meet in the Library at Grace Church. Contact person is Rosemary Way, rose.way@sbcglobal.net, 925-939-7665.

Caregivers meet in the Sanctuary at Grace Church. Contact persons are: Jan Alioto, jalioto@comcast.net, 925-890-8937; Sara DeZerega, saradezerega@aol.com, 925-377-1004; Janice Ransley, jeransley@comcast.net, 925-944-0162.

10:15 a.m. to 10:30 a.m.-Refreshments in the Oak Room. The PNMD Library, with books, flyers, and videos is open at this time. Please bring cut-up fruit or your favorite snack to share.

10:30 a.m. to 11:45 a.m. Guest speaker (See information above) Oak Room.

General questions may be directed to PNMD at (925) 939-4210 or website: pnmd.net.

Tri-Valley (Pleasanton) Support Group Meeting:
Meets second Saturday of the month, year-round, from 10 a.m. to noon at the Pleasanton Senior Center, 5353 Sunol Blvd., Pleasanton. This is a support group and learning session that is open to all who want to learn about PD. Facilitators are Norman Bardsley, 925-831-9940 and Mary Behrendt, 925-989-0209.


Contact Us

Web site: https://pnmd.net 
General Information Phone No.: (925) 939-4210

President: Abraham Raja (925) 381-0688 or anraja@att.net
Vice-President and Program Chair: Joan Flack (954) 540-6965 or joan.flack@gmail.com
Secretary: Janice Ransley (925) 944-0162 or jeransley@comcast.net
Treasurer: Amy Van Voorhis (925) 932-5036 or pnmdtreas@astound.net
Membership: Sarah Talach (209)404-8824 or sarah.talach@gmail.com
Health and Wellness Program: Cathy Hostetler (925) 932-5285
Volunteer Coordinator: Cathy Hostetler (925) 932-5285 or cathyhostetler@hotmail.com
Information Technology: Sara Allen (925) 296-0221 or allensa7@gmail.com
Newsletter Editor: Jodi Barry (415) 328-4123 or jodibarry0307@gmail.com
Publicity: Jodi Barry and Beth Donegan (949) 680-9133 or craig.donegan@yahoo.com
Librarian: Rick Stevens (510) 928-0936 or rickatron@comcast.net
Fundraising Chair: Abraham Raja (acting)
Tri-Valley Support Group: Mary Behrendt (925) 989-0209 or mary.behrendt@comcast.net
Tremble Clefs: April Wakeman (925) 276-0463 or adwakeman@yahoo.com
Women's Discussion Group: Rosemary Way (925) 939-7665, rose.way@sbcglobal.net
Men's Discussion Group: Derek Ransley (925) 944-0162 or dransley@comcast.net
Caregiver Discussion Group: Jan Alioto (925)890-8937 or jalioto@comcast.net; or Sara DeZerega, saradezerega@aol.com, 925-377-1004; or Janice Ransley, jeransley@comcast.net, 925-944-0162
DBS: Gary Hevener (925) 937-4335 or garylhevener@gmail.com

Donations and Memorials: Please mail to P.O. Box 3127, Walnut Creek, CA 94598.

Disclaimer: This newsletter is published to increase awareness of problems related to Parkinson’s Disease. Neither PNMD nor its members make any warranty or assume any responsibility as to the accuracy, completeness, or usefulness of any information presented. The editor’s opinions are strictly his own.