The Shaky Times
-- Online Edition --
July 2019
Here's what's below:
July General Meeting Speakers

July Tri-Valley Meeting

PD - Changes and Freedom

Making Assumptions About Symptoms

Is a Vacation Even Possible for a Caregiver?

34th Annual Rotary Alzheimer's Parkinson's Gala

Donations

Information and Resources Library

Exercise and Activity Classes

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

Saturday, July 20, 2019 - General Meeting

Presentation: Neuroprotective Strategies for Parkinson's Disease
Speaker: Dr. Maya Katz, Movement Disorder Specialist UCSF

Dr. Maya Katz is a neurologist at the UCSF Movement Disorder and Neuromodulation Center. She specializes in treating patients with Parkinson's disease, essential tremor, dystonia and other movement disorders. Her research interests include identifying ways to delay Parkinson's disease progression and improving outcomes for patients treated with deep brain stimulation. She is also interested in multidisciplinary approaches to treating advanced movement disorders. Dr. Katz earned her bachelor's degree and her medical degree from Cornell University. She completed her internship and residency at Mount Sinai Hospital and her neurology fellowship in movement disorders at UCSF .
July Tri-Valley Meeting

Saturday, July 13, 2019, 10 am- Pleasanton Senior Center

General discussion and sharing.               
PD - Changes and FREEDOM
By Carol Fisher

We are all aware of how you feel changed when you have PD. It looks and feels like some combination of slowness, stiffness, depression and/or sadness, anxiety, anger, frustration, cognitive differences, lack of energy, loneliness, and some changes in how you understood the rhythm and structure of your life.

It is tempting to feel victimized by this diagnosis and the reality of how it feels in your body and in your life. It is tempting to feel like you have been run over by a slow-moving train. It is tempting to feel angry, sad, resigned and pretty much lacking in motivation. All of these feelings are also natural and somewhat expected under the circumstances.

There is a silver lining if you have the courage and the desire to take a step back and realize that this is an opportunity to feel and know yourself in ways that you may not otherwise have known or had or taken the opportunity.

We all have a “life story”, a formulation and a construct that comes from our genetic pool, our culture and our set of life circumstances and choices. Most people stick to that story their entire lives unless something – usually something dramatic – comes along to bring an awareness or a necessity to CHANGE THAT STORY.

So – here are some things to consider!

  • What part of your life story do you most value and wish to continue putting energy into? Perhaps it is your partner, your children, certain friendships or activities.

  • What part of your “identity” are you willing to lay down? For some people, it is their “work” identity or being the one that always seems to take care of things or people, sometimes at the cost of their own well-being.

  • What parts of yourself have been on the back burner and may still be smoldering? Maybe painting or writing poetry or studying geology or Shakespeare or dancing or learning how to play bridge or poker. Many, many activities use parts of the brain that are not affected by PD. Some people that have difficulty signing their name can paint exquisite, finely detailed imagery. It’s like that incredible gift was just waiting inside of them for the rest of the life story to take a break!!

  • Are you willing to allow yourself the time and the freedom to feel yourself in some ways that may be uncharted territories for you?

  • Are you able to access the ideas inside of you that you still have curiosity about?

  • Are you able to identify what brings you the most joy and happiness?

"Life may not be the party we had hoped for, but while we’re here we should dance!" Unknown

Carol Fisher, Registered Yoga Instructor, namastecarol@gmail.com
 925-566-4181
Making Assumptions About Symptoms
Parkinson's News Today
April 10, 2019

I have a bad habit of assuming things. You would think (an assumption) that I would have learned by now, but no.

Take today for example.
My husband and I were at the mall this afternoon people-watching in front of the coffee shop. I watched through the glass doors as a dad bent over and tied his approximately 11-year-old son’s shoe. Attached to this boy’s belt was a knife sheath, which held a knife with about a 6-inch blade (another assumption).
I told my husband that you’d think if that boy was old enough to be in possession of a knife like that in public, he could tie his own shoes. Then the dad stood up and the boy turned to face me head-on, and that’s when I saw it: the broken arm. It’s hard to tie shoes with a broken arm.
You’d think I’d have learned by now, but again — no.

However, I am getting better. I’ve been praying to be redeemed from my habit of assumption, but it’s tough. I have stopped drawing conclusions right away. I can hold onto thoughts that once ran rampant, and instead, I am trying to get the whole picture, or I turn away from the “picture” entirely.

Having Parkinson’s has helped me learn this lesson.
We can walk funny. We can talk funny. We can move all sorts of different ways. We can stop in the middle of a sentence or stop in the middle of a walk and have to be jump-started by the help of another. We know what’s happening, but the strangers who watch us most likely haven’t a clue.

They may assume we’re a tad bit tipsy, forgetful, senile. Any number of things could account for our odd behavior. Because I act the way I do (tremors, dyskinesia, dystonia, masked face, etc.), I have come to see others differently. To look past the initial assumption and see the situation for what it really is: not a spoiled child, but one with a broken arm.
Now I need to figure out why he’s got a 6-inch knife in a leather sheath hooked to his belt. I don’t want to even think where my assumptions could take me with that one.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bio News Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Is a Vacation for a Caregiver Even Possible?
Yes -- Here's Your New Way to "Travel"
Excerpted from CNN.com/travel by Amy Van Voorhis

When a family member has an extended illness, there really aren't enough hours in the day for the necessities: putting in some hours on your job, making sure your loved one is cared for adequately, keeping the bills paid, etc. And time off for a vacation? That's not conceivable when a full night's sleep is a treasured luxury and your expenses outpace your income. Or is it?

Vacations are one way we take care of ourselves. They are a chance to recharge and refresh. You just have to change the way you think. What used to be a week off is now a day off. What used to be a day off is now an hour off. "Vacation" might mean one glorious day free of both caregiving and work duties. "Travel" might mean a five-mile, 30-minute detour that has nothing to do with [your] appointed tasks. You can create some precious moments in these little dollops of time and limited place. You gain a new appreciation for what's always been under your nose when most of the world is suddenly cut off to you.

Here are some ideas on making the most of the situation and still getting in some quality "travel" time:

-- Parks, parks and more parks: Green spaces are nothing less than a salvation, and many are free. It can be a small space in a town or a big state park, which may have a small parking or entry fee. It's worth it. A chance to stretch your legs, breathe fresh air and soak in some nature is invaluable.
-- Community festivals: A lot of these are also free (or cheap), and it's a great chance to get around some happy people.
-- Play tourist in your own city: Pretend you have friends coming in from out of town. Where would you take them? That might be somewhere you'll want to go for yourself. Even a smaller city or a rural area should have some diversions you haven't gotten around to seeing.
-- Armchair travel: This one might depend on your mood. But if you think it will lift your spirits to read about places far away, escape that way. For instance, CNN Travel has a wonderful Destinations page of more than 50 places -- from Abu Dhabi to Vietnam. Click around and see what interests you. It's a great way to take a journey in your mind when you can't do it with your body.
-- Take photos: These days, most of us have a phone equipped with a camera. Use it! Perusing your "vacations" is another way to take a mental break, plus you can share them with your loved one who is stuck inside all the time.
-- Use your money and personal connections: If you're fortunate enough to have deep savings, by all means use that money. Hire someone to replace you some of the time if your particular circumstances allow. 

34th Annual Rotary Alzheimer's Parkinson's Gala
Donations
Grant from the Rossmoor Rotary Foundation


Memorial Gifts:

In Memory of Dennis Donahoe:
  • Gia Harrigan

In Memory of Jackie Bardsley:
  • Lafayette Christian Church

In Memory of Carole Kafel:
  • Katherine Aquilar
  • SP Contracts Team of Harvard University
  • Holiday Hills Homeowners' Association
  • Michael Dellinger, Bay Area Property Services
Library and Information Resources
To Members and Friends:

The concept of neuroprotection in Parkinson's Disease arose in the late 1980's. It refers to the ability to slow or stop the progression of the disease and therefore prevent the disability found in advanced disease. The thinking is that by reducing the rate of death of nerve cells over time, neural function would be better preserved. There are many obstacles in achieving this, such as the cause of the disease remains unknown; a reliable animal model to use for experiments to test drugs is needed; knowledge of the dose to use in clinical trials is lacking; trial design to allow distinction between disease-modifying and symptomatic effects is tricky; and the cost and time required for development are high. Nonetheless, researchers are trying to find something that will preserve neurons that make dopamine and thus relieve the progression of PD. Dr. Maya Katz from UCSF will speak to us about these issues and hopefully have some promising news at our meeting on July 20. Some supporting literature will be available on the library table.
The library opens at 10:15 after the individual group sessions end. Books borrowed must be signed on the clipboard available. Information about  variety of community resources is available for you to take. A sign-up sheet is available for copies of power point presentations should the speaker give them to us. This requires your name and email. Suggestions regarding the material are welcome.

Janice Ransley, M.D. Library Chair
Poker for Parkinson
Tremble Clefs
Has your voice gone soft?
Do you wish people could hear you better?
You CAN do something about it –
                        S I N G!
The Tremble Clefs sing every week!
You can too!
No experience necessary
We meet every Thursday from 1:30 to 3:00
At the Lafayette Orinda Presbyterian Church

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Boot Camp, Walnut Creek
Monday, 9:30-10:45 AM, Petra Fibrichova, 510-520-4523
Yoga
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
Wednesday, 11:00 AM - 12 PM, Lena Hart, 917-806-7929
Tremble Clefs
Thursday, 1:30-3:00 PM, Michael Grupp, 925-451-3389
Boot Camp, Dublin
Mon., Wed.,Fri., 10:00-11:15 AM, Anu Ramaswamy, 925-922-0589

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

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. All are welcome and there is no charge. No RSVP’s needed.

Here is the agenda:

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

Men with Parkinson’s Disease Only: For men newly diagnosed or who’ve had PD for years: time to share, laugh, and learn from each other. Meeting location is the Fireside Room at Grace Church. Contact person is Derek Ransley, dransley@comcast.net (925) 944-0162.

Women with Parkinson’s Disease Only: For women newly diagnosed or who’ve had PD for years: time to share, laugh, and learn from each other. Meeting location is the Library at Grace Church. Contact person is Rosemary Way, rose.way@sbcglobal.net (925) 939-7665.

Caregivers Only: Caregivers discuss issues relating to their roles. Meeting location is the Sanctuary at Grace Church. Contact person is Jan Alioto, jalioto@comcast.net (925) 890-8937.

10:15 a.m. to 10:30 a.m.-Assemble in Oak Room . The PNMD Library, with books, flyers, videos, etc. is open at this time. Bill Clinch, Moderator, will introduce new members and make announcements.

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

11:45 a.m. to noon Q&A, Wrap up.

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 & Jackie Bardsley, (925) 831-9940.


Contact Us

Web site: https://pnmd.net 
General Information Phone No.: (925) 939-4210
Co-Presidents: Abraham Raja (925) 381-0688 or anraja@att.net
Lance Gershen (925) 932-1028 or lancegershen@gmail.com
Secretary: Janice Ransley (925) 944-0162 or jeransley@comcast.net
Publicity: Beth Donegan (949) 680-9133 or craig.donegan@yahoo.com
Treasurer: Amy Van Voorhis (925) 932-5036 or pnmdtreas@astound.net
Membership: Mitchell Morrison (781) 964-2345 or morrisonml@hotmail.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
Librarian: Janice Ransley (925) 944-0162 or jeransley@comcast.net
Program Chair: Lance Gershen (925) 932-1028 or lancegershen@gmail.com
Fundraising Chair: Ken Kuhn (925) 588-9837 or kenkuhn56@yahoo.com
Tremble Clefs: Michael Grupp (925) 451-3389
Caregiver Discussion Group: Jan Alioto (925)890-8937 or jalioto@comcast.net
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
DBS: Gary Hevener (925) 937-4335 or garylhevener@gmail.com
Donations and Memorials: Please mail to P.O. Box 3127, Walnut Creek, CA 94598.
Newsletter Editor: TBD - Please email submissions by the 15th to: Abraham Raja at anraja@att.net
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.