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

April Tri-Valley Meeting Speaker

Kindness Matters

Anticipatory Grief

Tri-Valley Rock Steady Boxing?

Moving Day

Donations

Information and Resources Library

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

Saturday, April 20, 2019 - General Meeting

Presentation:  The Michael J. Fox Foundation for Parkinson's Research
Speakers: Mary McQuillen, Advancement Officer, and Jennifer Riedel, Associate Director

Topics will include:
  • an update on promising Parkinson's disease research
  • the latest legislation that impacts the lives of people with Parkinson's
  • priority areas for Parkinson's policy work
  • information on how to get involved with clinical research through Fox Trial Finder and Fox Insight
 
April Tri-Valley Meeting Speaker

Saturday, April 13, 2019 - Pleasanton Senior Center

Presentation:  Agility Neuro Physical Therapy
Speaker: Dr. Priti Chitale, PT, DPT

Dr. Chitale works with her patients on exercises and activities to retrain/relearn movements of daily life such as getting in and out of bed, getting in and out a car, standing, ability to use arms while standing, walking.

Presentation: Rock Steady Boxing
Presenter: Lori Sant o   
When You're Living with Parkinson's Disease, Kindness Matters
ParkinsonsNewsToday.com
March 12, 2019





“You will never know what someone is dealing with behind closed doors. No matter how happy someone looks, how loud their laugh is, how big their smile is, there can still be a level of hurt that is indescribable. So be kind. Even when others are not, choose to be kind.” —Author unknown, via  3am Thoughts  Facebook page

What was my mindset?

The weather was typical of a New York winter’s day: cold, damp, and dreary. My spirits were equally dark and depressing. Parkinson’s disease (PD) has a way of aging people before their time. As I walked into the grocery store, I was ruminating on how much my bones ached and how fatigued I felt.

What happened?

When I went to purchase my items, I asked for my 10 percent senior discount — there are some benefits to getting old. The young woman behind the counter looked me in the eye and said in a sincere tone that she thought I was much younger than 65. I could tell she meant to pay me a compliment and was not going to ask me to prove my age with my driver’s license. I was so touched by her kind words that I broke down in tears.

What changed?

This woman’s random act of kindness blew me away. My mood transformed from melancholy to elated in seconds. She didn’t know that I was in the midst of a major pity party thinking about how old I felt. She was surprised by my tears and didn’t realize how welcome her words were to me when I was feeling miserable.

Why am I telling you this?

The point of my sharing this brief, transformative moment of my PD journey is that kindness does matter. The simplest actions can make a huge difference to someone who may be going through a difficult time. It has been weeks since this act of kindness. However, I still smile at the thought of that simple gesture from a stranger. This was an unsolicited, kind act from someone who didn’t know how unhappy I was or how much I needed some positive feedback.

Kindness matters. “ No act of kindness, no matter how small, is ever wasted .” 

Anticipatory Grief
This article was contributed by Mary Hevener

Grief touches us all, especially as we get older and we begin to lose friends and family around us. We need to be able to understand and accept “grief” as a part of our life experience before and after a loss. 

I met Linda Shaw many years ago through our mutual love of quilting. We reconnected after our husbands, Bob and Gary, were diagnosed with Parkinson’s.  We’ve shared our experiences, strength and hope through the years sharing this process. Sadly, Bob passed away on December 23, 2018 (Gary’s birthday) not from Parkinson’s, but from cancer.
 
On one occasion I shared with Linda what I was going through, how I felt. Linda told me that what I was feeling was Anticipatory Grief , a grief that comes about before the death of someone we care about. Anticipatory grief is a common reaction among people who are facing the eventual death of a loved one. While most people are familiar with the grief that occurs after a death (conventional grief), this kind of grief that occurs before a death is not often discussed. Because of this, some people find it socially unacceptable to express the deep grief and pain they are experiencing and receive the support they need.

Following is an article I found on Anticipatory Grief Symptoms and Purpose written by Lynne Eldridge, MD that I found helpful:

Anticipatory grief is defined as grief that occurs before death (or another great loss) in contrast to grief after death (conventional grief). Rather than death alone, this type of grief includes many losses, such as the loss of a companion, changing roles in the family, fear of financial changes, and the loss of dreams of what could be. 

Anticipatory grief can be similar to grief after death but is also unique in many ways. Grief before death often involves more anger, more loss of emotional control, and atypical grief responses. This may be related to the difficult place – the in-between place people find themselves in when a loved one is dying. It’s those mixed up feelings people find themselves in when they attempt to find that tender balance between holding on to hope and letting go.

Not everyone experiences anticipatory grief, and it’s not good or bad to do so. Some people experience very little grief while a loved one is dying, and in fact, find they don’t allow themselves to grieve because it might be construed as giving up hope. Yet for some people the grief before the actual loss is even more severe.
 
With Parkinson’s disease the patient and the caregiver grieve (even in anticipation) the loss of independence, mobility, friendships, life goals, and more. Saying goodbye to the relationship, as we knew it and moving into a future without the deceased’s physical presence.
 
Grief before death isn’t a substitute for grief later on and won’t necessarily shorten the grieving process after death occurs. There is not a fixed amount of grief that a person experiences with the loss of a loved one. And even if your loved one’s health has been declining for a long time, nothing can really prepare you for the actual death.

Y et, while anticipatory grieving isn’t a substitute or even a head-start for later grieving, grieving before death does provide opportunities for closure that people who lose loved ones suddenly never have.
  
For those that are dying, anticipatory grief provides an opportunity for personal growth at the end of life, a way to find meaning and closure. For families this period is also an opportunity to find closure, to reconcile differences, and to give and grant forgiveness. For both, it is a chance to say goodbye.

Though anticipatory grief doesn’t necessarily make the grieving process easier, in some cases it can make death seem more natural. It’s hard to let our loved ones go. Seeing them when they are weak and failing and tired makes it maybe just a tiny bit easier to say, “it’s okay for you to move on to the next place.”

The emotions that accompany anticipatory grief are similar to those, which occur after a loss but can be even more like a roller coaster at times. Some days may be really hard. Other days you may not experience grief at all. Some of the symptoms one may experience is sadness and tearfulness, fear, irritability and anger, loneliness, a desire to talk, anxiety, guilt, intense concern for the person dying, physical problems (sleep difficulty and memory problems), fear of loss, compassion and concern for children.

Anticipatory grief is a normal process in the continuum of grief. But in some cases, this grief can be so intense that it interferes with your ability to cope. It’s also common for people to develop depression when faced with all of the losses surrounding grief and it can be difficult to distinguish grief from depression.

There is no right way to feel or grieve. There are stages of grief and its important to note that most people do not neatly follow these stages one by one and find that they wake up one morning feeling they have accepted what has happened and have recovered. Instead any of the stages may be present and you may find yourself re-experiencing the same feelings of shock, questioning or despair many times over.

Grief is like living two lives; One is where you “pretend” everything is alright…And the other is where your heart silently screams in pain.


Tri-Valley Rock Steady Boxing?
 At the Parkinson's Tri-Valley Support meeting on April 13, Lori Santo from Rock Steady Boxing (RSB) East Bay in Concord will present the history and basics of RSB. Take this opportunity to learn how this exercise program became so popular and has helped many people with Parkinson’s and Parkinson’s variant conditions.

If we have a minimum of 12 People with Parkinson’s or a Parkinson’s variant who are committed to attend classes, the Rock Steady Boxing East Bay will look into a plan to bring their program to the Tri-Valley.

Are you seriously interested in participating in a new branch of RSB in the Tri-Valley, possibly Dublin or Pleasanton? If so, please contact Mary Behrendt at mary.behrendt@comcast.net or come to the Tri-Valley Parkinson’s Support Group meeting on April 13 at the Pleasanton Senior Center from 10 am- 12 noon. The address is 5353 Sunol Blvd., Pleasanton.
Donations

John and Carol Harkin
Enid Santariano
Anonymous

In Memory of Father Brian Joyce
David M. Rainero, Anne Sigmon, Helen and Robert W. Henry

Information and Resources Library
To Members and Friends:

The speakers (2) at the April general meeting of PNMD are from the Michael J Fox Foundation. The foundation is focused on finding a cure for Parkinson's Disease and developing therapies for its treatment. It is the largest nonprofit funder of Parkinson's drug development in the world. The foundation has a long-term observational study with more than 32,000 people with PD and their loved ones, including caregivers, participating online at foxinsight.org. The foundation has also partnered with 23and Me to capture genetic data and matching genotypes and phenotypes. There is also the Parkinson's Progression Markers Initiative (PPMI) which influences clinical trial design and is geared toward improving understanding of the natural history of the disease. Short videos describing these various aspects of MJFox Foundation can be found on its website, www.michaeljfox.org. There will be some material on the library table as well.

The Parkinson Foundation, a different entity, has new Helpline Hours: 9 a.m. - 8 P.M. EDT. Their number is 1-800-4PD-INFO (473-4636). The web address is: Helpline@Parkinson.org.

Another website of interest is that of the American Parkinson Disease Association - apdaparkinson.org. On April 2, 2019 they have a webinar titled "What to Do When Your Meds Stop Working". This is scheduled for 12 - 1:00 p.m. EDT. Previous webinars are available on their website under Education and Support such as "Managing your Symptoms" from Jan. 29, 2019.

Please stop by the library table: borrow a book, find a helpful/informative handout, look at a brochure, pick up a free notebook or lip balm. If you have any suggestions for reading material, please speak to me or Linda Madden.


Janice Ransley, M.D.
Library Chair

It's Time to Pay 2019 Annual Dues
Dues are still $50 per household. You can either mail a check, pay in person at the next Saturday support group meeting, or pay online at the 'Join or Renew' tab of our website  www.pnmd.net . Thank you for supporting PNMD!

PNMD
P.O. Box 3127
Walnut Creek, CA 94598

Moving Day
Moving Day San Francisco                        Moving Day San Jose
Embarcadero Plaza                                     Evergreen Valley College
May 5, 2019                                                  Saturday June 1, 2019
Registration Opens: 9:00AM                      Registration Opens: 8:00AM
Walk Start time: 10:30AM                          Walk Start time: 10:00AM            
Contact: Gena Lennon                               Contact: Gena Lennon
glennon@parkinson.org                       glennon@parkinson.org
PH: 415-963-0304                                        PH: 415-963-0304 

Moving Day is more than just a walk… it’s about supporting your Parkinson’s community, sharing your story, honoring your loved ones and encouraging others to help us beat Parkinson’s disease (PD).

Moving Day is more than just a walk…
Your participation will make a real impact on people with Parkinson’s in your community. Every dollar raised by Moving Day participants supports the Parkinson’s Foundation mission by: 
 •Delivering quality care to more than 145,000 people living with Parkinson’s
 •Funding cutting-edge research to improve treatments and advance toward a cure
 •Providing free resources for people living with Parkinson’s and their families
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 3:30
At the Lafayette Orinda Presbyterian Church

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Boot Camp
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
Rock Steady Boxing
8 classes/week-call for times, Jimmy Greninger, 925-785-1272
Tremble Clefs
Thursday, 1:30-3:30 PM, Michael Grupp, 925-451-3389
Boot Camp
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 Abraham Raja at (925) 939-4210 ; Lance Gershen, Program Chair (925) 932-1028.

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.