The Shaky Times
-- Online Edition --
September 2019
Here's what's below:
September General Meeting Speaker

September Tri-Valley Meeting

Play

Finding My Tribe

PNMD Survey

Last Ronnie Gram

Tremble Clefs

Poised for Parkinson's

Information and Resources Library

Exercise and Activity Classes

Meetings, Announcements, and How to Contact Us
September General Meeting Speaker

Saturday, September 21, 2019 - 9 am-noon
Grace Presbyterian Church, Walnut Creek

Presentation: Nutrition in PD
Speaker: Cindy Gershen

Cindy Gershen is an instructor at Mt. Diablo High School in Concord, California; chef/owner of Sunrise Bistro in Walnut Creek, California and the founder of Wellness City Challenge, a community health activist organization.

September Tri-Valley Meeting

Saturday, September 14, 2019, 10 am-noon
Pleasanton Senior Center

Potluck Picnic on the Patio

Please bring your favorite dish to share for a picnic social to celebrate end of summer. Comradery, sharing and fun is the theme of the day.
            
PLAY
By Carol Fisher

Scientists have recently determined that it takes approximately 400 repetitions to create a new synapse in the brain – UNLESS it is done with PLAY , in which case, it takes between 10-20 repetitions. Dr. Karyn Purvis

How long has it been since you thought about PLAYING? What does that even mean? If you have Parkinson’s, what you mostly think about is just how to FUNCTION!!!

WHAT IF ……….
  • When you went to an exercise class you just PLAYED AROUND with how your body can move and how it wants to move that day?
  • When you got out of bed or out of a chair you PLAYED AROUND with where and how to place your feet, arms, hands and body to see what works the best?
  • When you were making lunch you PLAYED AROUND with making your sandwich be the most fun and satisfying it could be that day?
  • You invited a friend or loved one OUT TO PLAY? What would that look like? Do you even know how to think about that? Might it be going outside and sitting under a tree? Perhaps tossing a ball back and forth. Reading to each other? Making fresh lemonade? Doing a puzzle?
  • Reading an article and having a discussion about it? Going to a movie, an outdoor concert, the theater, a new restaurant, a museum, a winery, taking a class about something completely new and different, going to the library, taking a meditative walk in a new park, taking a ferry ride, sitting by the ocean or a lake, making a picnic and watching the children on a playground, laying down in the grass and looking at the sky, going swimming or just dangling your toes in the water, putting on your favorite music and dancing around the room or the yard.
  • The list is endless, and I’d be willing to bet that as you look at this list many of these things feel like they would be a CHORE.

What if you looked at them as PLAY?

What I like to call the “JOY FACTOR” is a HUGHLY IMPORTANT piece of keeping yourself moving and maintaining your quality of life. It is easy for the PLAY and the JOY to get buried in the drudgery of just trying to keep going.

  I CHALLENGE YOU TO MOVE THE PLAY INTO THE FRONT SEAT AND PLACE THE DRUDGERY IN THE BACKSEAT OR EVEN THE TRUNK!!!


Carol Fisher, Registered Yoga Instructor, Certified PWR Instructor, namastecarol@gmail.com,  925-566-4181
Finding My Tribe
By Heather Kennedy, blogging as Kathleen Kiddo - Aug. 12, 2019
World Parkinson Conference (WPC) - Living with Parkinson's blog

Parkinson's is such a pain in the neck! I'm not being flippant, and it's not only hurting my neck, it affects every part of my body. 

If you have Parkinson's you are constantly negotiating with an unreasonable, mercurial and hostile occupation of your own body, with scant relief in sight.
 
It's more than just my body, it's everything. My relationships, family, career, and general sense of well-being have been getting crushed. There is no part of life Parkinson's leaves undisturbed. Torturing from within, PD is a sharp quadruple threat of depression, anxiety, chronic pain and exhaustion. A slow humiliating dismantling of a human being.
 
You may find your bff forever friends are too uncomfortable with your life-altering condition to stick around. Your situation a harsh reminder of mortality or failure or who knows what in their shaky (no pun) worldview, and that has nothing to do with you.
 
I feel mostly alone in the community where I reside, as friends enjoy normal activities with freedom and fewer obstacles. They resist any frustration with my decreasing speed and mean well, but along with strangers, they may relate with much less significant health issues, insisting they understand or offering medical advice...until I want to scream.

I know you want to scream too, because I can see the smoke coming out of your ears. Maybe you should try that cross body therapy that's so good for us, and punch things. Just make sure that you put boxing gloves on and stick with inanimate objects. This condition is maddening and lonely and entirely disorienting, at best.
 
With Parkinson's the body behaves as if disjointed from your intentions,  disconnected your brain. You can will your hands to move in a particular way, but Parkinson's will make your limbs tremor and stall, awkwardly, often painfully. This tends to keep you apart from everything and everyone going on around you as you move through society among a majority who does not recognize your condition.

Any of us want to hide when we are not doing well. We shield our friends and family from the worst so that we don't disturb or upset them but also because we don't wish to humiliate ourselves. It's hard to go from being an athlete to a stooped figure. It can make anyone feel so small and insignificant in the lives of others.
 
Parkinson's has control over the master panel of your intentions now. The great Oz has spoken, now take your pills, check your head, and be on your way! Memento mori.

There are other ways to live. You are not alone nor are you particularly unique.
Welcome to The World Parkinson Congress! You are among thousands of people who you don't have to explain yourself to. There is nothing about your behavior they will find unusual or off... even your off times you waste so much energy trying to hide everywhere else.  


Heather Kennedy writes for Kathleen Kiddo from her home near SF, offering unique talks and film presentations about living with Parkinson's. Since diagnosis in 2011, she has collaborated with organizations such as Davis Phinney Foundation, The Cure Parkinson's Trust and The World Parkinson's Congress. in 2020 Heather expects to release two books, one on how to approach grief and a vivid collection of short stories.
The Survey Says...
By Derek Ransley

This is the first of several short articles based on the PNMD 2019 Survey conducted by my wife Janice and me. Hopefully, you all received the Survey Summary Report. If not, send an e-mail to dransley@comcast.net and we will send you an electronic copy.

In these articles, I am allowing myself to express my own opinions and, if you look carefully you may find a touch of humor and informality. Comments or questions are welcome.

An early question was “How do our results compare with academic studies? Our study showed that 79% of us had issues with tremors . This compares with 80% for a large academic study and 70% by Parkinson News Today. It seems in this one area at least our results are consistent with other studies.

86% of us had issues with small handwriting.  But, isn’t small handwriting small potatoes? It might be one of the factors in the early diagnosis but nothing to fuss over. Am I wrong?

On the other hand, 80% of us have voice issues including me. I hate it when people ask me to repeat myself when I haven’t said anything. This is more frustrating because voice issues are often accompanied by drooling or contorting of one’s face and you find that a version of Munch’ “The Scream” looks back at you from your mirror. I tell myself that my Adonis days are over (which presupposes that they ever existed.)

47% of our respondents claimed that falling was an issue. A large academic study claimed that 68% of their study group had falls. Is this a case of underreporting on our part? In the MwP group, there is a tendency to make a joke of falls. But any falls can be life changing. At our condo I have nine vicious concrete steps waiting to get me. (Have you noticed that there are shadows on both the top and bottom steps?) I use a cane and hang on to the bannisters as I sally forth.

Derek L Ransley (Men with Parkinson’s Facilitator.)

Last Ronnie Gram
Dear PNMD Friends,

I am formally retiring from my weekly Ronnie grams.
It has been a privilege having the opportunity to send you
Various words of wisdom from many sources regarding Parkinson’s disease.
I have endeavored to assist and inform you, no matter where in the journey you are.

My heartfelt thanks and best wishes to all of you!

With smiles,
Ronnie Wanetick
Tremble Clefs
Poise Project
Library and Information Resources
To Members and Friends:

The words "Food, Glorious Food...Don't care what it looks like...Burned! Underdone! Crude!" come from the Broadway musical "Oliver". The song was written by Lionel Bart, a Londoner. An adaptation from Oliver Twist by Charles Dickens, the chorus was sung by children who never had enough to eat, even gruel. Most of us have never known what that is like. However, people with Parkinson's may have other issues with food.

Some of the main areas where food is involved include presence of pesticides, absorption of protein, constipation, nutrition for a healthy brain and body and consistency of food. Pesticide exposure has been a documented link between Parkinson's and the environment, including produce, meat and dairy products. Relief of constipation, a common problem in Parkinson’s, is helped by a diet high in fiber found in fruits, vegetables and whole grains. Vitamins good for the aging brain, with or without PD, include all of the Vitamin B vitamins, especially B12. Absorption of protein from food is known to slow and/or prevent uptake of carbidopa/levodopa, hence the recommendation to take that medicine a half to one hour before a meal or one hour after. Some people also take protein between meals. Swallowing may be a problem in PD. Adjusting the type of food one eats, taking small amounts of food in a bite and eating slowly will help make it easier to ingest your food.
At our meeting on September 21 Cindy Gershen will speak to us about food. Her presentation will likely cover these topics and more. Some handouts pertaining to food and PD will be available on the Library table. There is also detailed information on this subject in the Davis Phinney book Every Victory Counts as well as in the books Caregiving for Parkinson's Disease and Dr. Ahlskog's book, The New Parkinson's Disease Treatment Book . These are available also on the Library table.

Other resources about transportation, exercise, UCSF, and general information are available. If you do not see something about a specific topic, please ask me or Linda Madden and we will try to find something for you. All books need to be signed out on the clipboard available and returned/renewed the next month.

Janice Ransley, M.D. Library Chair
Donations
Mary Ann McGill  

Laura and Robert Lyman

Igor and Rita Sobolev in memory of Katherine Sobolev

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, April Wakeman, 925-276-0463
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: April Wakeman (925) 276-0463 or adwakeman@yahoo.com
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.