The Shaky Times
-- Online Edition --
September 2018
Here's what's below:
September Meeting Speakers

Ideas and Strategies for Handling Worsening Symptoms

I Am Lucky

Dealing with Depression

STILL, a Poem

Donation Acknowledgements

A Letter from Petra

Information and Resources Library

Meetings, Announcements, and How to Contact Us
September Meeting Speakers

Saturday, September 15, 2018

Presentation: Meditation and Yoga
Speaker: Carol Fisher

Carol Fisher, RYT, is a Yoga Alliance Certified Yoga Instructor and a certified PWR (Parkinson’s Wellness Recovery) instructor who has trained extensively for the past 21 years with Yoga Instructors from many traditions. Her prime focus over the past 12 years has been in designing and implementing Yoga/Movement classes for people with Parkinson’s Disease. She has worked and studied with John Argue, who has a long history of designing and implementing movement techniques for those with Parkinson’s Disease.

Presentation: Transportation Issues for Seniors and Disabled
Speaker: Elaine Welch

Elaine Welch is the CEO of Mobility Matters, a non-profit that provides volunteer driver assistance for home-bound seniors in Contra Costa County. An RN and MBA, retired from a career administering Medicare compliance for Kaiser Permanente, Elaine Welch founded this new organization and is focused on the transportation needs and disaster planning for seniors, veterans, & disabled individuals. 

i Ideas and Strategies for Handling Worsening Symptions
By Carol Fisher

To put it bluntly, having PD is a kind of roller coaster ride – a thrill a minute, if you like!!! Some days things feel pretty good . . . some days not so much.

Sometimes symptoms seem at bay and then the next day you feel stiff, listless or depressed, or you’re freezing more than usual, or your body just feels like a big bag of cement that you have to haul around.

We all know that PD is a progressive disease, but here are some thoughts about how to notice what is happening and how to decide what might be helpful.

1.       If you are feeling like you are just slower in general or all of your symptoms are worsening gradually, it may be time to talk to your doctor about whether you are properly medicated for what is happening to you now.

2.       If your symptoms are getting serious enough that they are impacting your daily quality of life, your cognition is good, and you have an interest in Deep Brain Stimulation, it may be time to start exploring whether this is an option that is right for you.

3.       If you feel pretty well one day and then the next day you feel foggy brained, sluggish, or frozen or have an upset digestive system, you may start exploring what you might have eaten either that day or the day before that might be adversely affecting you.

4.       Exercising more is the only strategy we have to push back against the symptoms of PD, so you may want to increase or change what you are doing for exercise – perhaps pushing yourself a little more than you normally would.
5.       Moving your body usually helps improve your mood. Going to a class and being with others who understand what you are feeling is a good start. Walk in nature and use your senses as you walk to take in the smells, temperature, colors, textures and what you feel under your feet.

6.       Having ongoing awareness of the things that bring you joy and that you can still do and bringing them into your day as often as possible tend to take your mind away from feeling low.

7.       Find a way to keep your bowels regular. When you are not eliminating, you feel sluggish and uncomfortable. Some people are getting a lot of help with this through dietary changes and also through an online site called poopdoc.com.

8.       Talk to other people you know with PD about what you are experiencing. They may have had a similar experience and found some solutions or relief.

9.       Be sure to balance exercise and other daily activities with rest. Understanding how much activity in a day or a week is enough is important. Explore what types of rest really allow you to feel revived and calm. Do whatever works best for you such as, naps, meditation, gentle floor stretching, or listening to music!

10.   Be proactive about tuning in to the nuances of what is going on with you. Don’t just assume that this is the dark road that is in front of you. No one has more information about what is going on in your body than you do! Ask questions; read and feel yourself intimately and completely. Find your own way to FIGHT BACK!!!

11.    Use the emotional, intellectual and spiritual support systems that are available to you and stay engaged in your important relationships.

I AM LUCKY

Every weekday at 8:00 a.m. I go to Mass at our small local chapel. There are usually about twenty in attendance. The average age is about 85. The oldest died about two months ago at the age of 99. We lose three or four participants a year. At 76 years of age I am one of the young ones. I am lucky.

After Mass I have coffee and toasted bagels with my wife of 55 years. She is still beautiful. We have four children, eleven grandchildren and one great grandchild. They all live within fifteen minutes of us and come over to our house at will, usually at dinnertime. I am lucky.

After my morning coffee I walk the reservoir. It is a 2.7-mile path and takes me an hour to complete, during which time I listen to books on tape. I love it.

Two days a week I take a boxing lesson for my Parkinson’s disease. The entire class is comprised of people at various stages of Parkinson’s disease. We learn each other’s first name and grow attached to each other. I don’t like the disease, but I like the class. Ironically, it makes me feel strong even though I’m not.

About fifteen years ago I suffered from depression. I hated it. My Parkinson’s has been present for approximately two years and I have not experienced depression during this time. I am lucky.

My life is good. My friends and family are aware of my condition and give me good support. My children tell me, “stop shuffling,” “stand up straight,” and “talk louder.”  My friends hold my elbow while I’m getting out of the car. They make my vodka tonic during happy hour, even if it’s at my house. I am not too proud to be pampered.

On Sunday mornings my wife and I have breakfast with our longtime friends. They each have their own crosses, so don’t have to dwell on mine. I don’t have ALS or cancer and I’m still alive.

I am lucky!

KJD (Kevin Dunne)

Dealing with Depression
By Derek L Ransley, PhD
I should start by saying that the opinions expressed in this document are based on my own experiences plus reading of articles on PD.

The literature on PD has trended from a focus on motor problems such as tremor, rigidity, gait, etc. to a greater focus on non-motor issues, which impact up to 60% of us. These include depression, apathy, withdrawal, and emotional disorders etc. The Parkinson’s Foundation’s Parkinson’s Outcomes Project says, “. . . depression and anxiety, taken together have the greatest impact on the health of people with PD, even more so than the movement challenges.” Unfortunately, non-motor disorders often tend to occur before motor problems kick in. Yet diagnosis of PD is most frequently made on the basis of motor disorders. Thus, the incipient PD patient may experience depression but not have a clue about what ails him/her. He/she will turn to his/her Primary Care Physician (PCP) for advice.

PCPs are not trained to identify PD in their patients. It is my experience that most health providers are not organized to deal with PD. Facilities are organized around specialties. There is a strong tendency to toss patients and their issues over the wall to a different specialty.  It has become accepted that PD is difficult to diagnose and delays in diagnosis are to be expected. I think this is a cop out.

In dealing with any health care provider, one learns to be one’s own advocate , preferably with support from his or her caregiver. There may be a need to press the PCP for further options. Our patient (let’s call him Joe), may be referred to a neurologist by the PCP. The likelihood is that Joe doesn’t appreciate the difference between a general neurologist and a movement disorders specialist (MDS) . An MDS has received additional year(s) of training but is not easy to find.  Typically, one sees the MDS every six months, although most are available by phone and e-mail. It is not easy to build a relationship with this very important person. Research tells us that patients who receive care from a neurologist/MDS do much better than those cared for by a PCP.

Alternatively, Joe may be sent to a Mental Health provider. The problem here is that there often is no bridge between Mental Health, which knows nothing about PD, and the neurologist, who often knows nothing about Mental Health issues.

I found myself to be depressed about seven years ago. There was no obvious reason for this. I knew that I had to do something . I decided to take two approaches. The first was to refer myself to Kaiser’s Mental Health group. I had one-hour, monthly meetings with a very kind social worker who was convinced that my problems were rooted in my childhood. There were aspects of my early life that might have contributed to my woes, but I was not convinced. When she retired, I terminated my appointments.

At no time was it suggested that I use medications to directly counter depression. The Parkinson’s Outcomes Project states, “Most people with depression are treated with a serotonin reuptake inhibitor.” More recently I have been taking a very low dose of Zoloft, which takes the edge off when anxieties threaten. It was my wife who suggested this, not my PCP or neurologist.

The second approach was to explore what meditation could do for me. I found that Kaiser offered a seven-week course on Mindfulness-based Stress Reduction . My wife and I both signed up. I wasn’t impressed with the teacher, but the course was based on the work of Jon Kabat-Zinn and his highly regarded book, Full Catastrophe Living .
Now my wife and I belong to a sangha in Walnut Creek; we meditate most days and read aloud to each other from our small library of meditation books. We have incorporated this into our life and we find it valuable. I would like to introduce meditation to PNMD, but I don’t feel equipped.  Dr. Suketu Khandhar, a Permanente Group MDS, recommends forming a cross-functional team to deal with PD. This is how HIV was approached and it is similar to the approach Kaiser uses in dealing with heart problems.

The team might include an MDS, a Mental Health specialist trained to be aware of PD symptoms, a physical therapist, possibly a voice specialist, the caregiver and trained nurses who would be the entry point for people like Joe. The Parkinson’s Foundation supports this approach and refers, in its booklet Mood, to a “comprehensive care team.”
 
The incidence of PD is accelerating, and some suggest that a pandemic is expected, so there is urgency that PD issues like these be addressed.

STILL
By Carol Peplinski, PD Survivor since 2008

Take away my voice, I still speak

Take away my rhythm, I still dance.

Take away my taste, I still eat

Take away my sense of smell, I still appreciate the roses.

Take away my leg muscle strength, I still walk

Take away my ability to hold a pen, I still write.

Take away my balance, I still practice yoga

Take away my happiness, I still smile.

Take away my swallow, I still drink

Take away my brain cells, I still think.

Take away my dreams, I still have hope.

Parkinson’s, you are cruel, but I am still kind.


Donation Acknowledgements
Thank you for supporting the work of the Parkinson's Network of Mt. Diablo!

  • Rossmoor Rotary Foundation
  • Lori and Stan Janczura


In Memory
  • Francine Duff in memory of Margaret Wildes
  • Friends from John Muir Senior Services in memory of James H. Hicks

In Honor

  • Vinit Parekh in honor of Dilip Parekh
  • Anonymous in honor of Art Fowler and Carol Fisher
A Letter from Petra
Dear members of Parkinson Network of Mount Diablo, 

It’s been a pleasure to meet some of you at the PD Bootcamp at the Grace Presbyterian Church on Mondays. I was lucky to get expert guidance from Murthy, Carol, and Mary for several months and am now enjoying leading the class myself. I love being able to use my yoga therapy skills that I gained through studying an 800-hour Yoga Therapy training and through teaching yoga for healthy aging for the last 5 years. I am also a big fan of the PWR! Moves program, a PD specific exercise developed to push against PD symptoms.
I am very excited to combine the benefits of both these practices in my classes so that I can keep you challenged and engaged, and improve your physical, mental and emotional well-being. I believe in the power of active life and mindful living and my mission is to share this passion with the world. I recently moved to Moraga where I now live with my husband Marek and my two children, Sara and Adam. We love the sunny weather and the beautiful sunsets, the swimming pool, and the biking opportunities. I look forward to meeting more of you in the PD Bootcamp. We play fun music and rock our PWR moves. Plus, you get to relax at the end while listening to the beautiful tunes of my steel drum. Come check us out!

Petra Fibrichova, C-IAYT
www.petrayogatherapy.com
fibrichova@gmail.com
510-520-4523

Information and Resources Library
Last month "Full Catastrophe Living" by Jon Kabat-Zinn, Ph.D. was introduced to the Library. The book discusses Kabat-Zinn's program called Mindfulness-Based Stress Reduction. This month the Library will continue to emphasize mindfulness, which includes meditation and gentle yoga as well as practices such as T'ai Chi Chih. Carol Fisher, RYT will be speaking at the main meeting about meditation and Yoga.
Kaiser Health Plan has many Health and Wellness classes, including some on meditation and gentle yoga. These programs can be reviewed by going on line at kp.org. For example, in Walnut Creek there is a Mindfulness class beginning Sept.6, extending through Oct. 18, and a second group of classes from Oct 25 - Dec 13, 2018. You can call the Health Education Center in Walnut Creek at (925)-295-4410 for registration and fee information. There is usually a waiting list for these classes so if you are interested, sign up soon. While the John Muir Health website recommends both yoga and meditation for stress reduction, I could not find any classes being offered at the medical site.

The Library will have some handouts available about meditation. One is called "Changing Our Attitude Toward Pain" by Pema Chodron, which encourages us to become familiar with our pain and sit with it. Doing so takes practice but with time peace comes. There will also be a paper about "Letting Go." Meditation practice helps us to rid ourselves of compulsive, repetitive thinking by learning to let go of worries, fears, anger and other feelings and thoughts, many of which also cause pain.

Please browse through all of our books and other articles and brochures. All books must be signed out. Please return them at the next meeting so that others can enjoy them, too. If you have any suggestions or questions about the material, please share them with the people helping at the Library table. 

Janice Ransley, M.D., Library Chair

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Boot Camp
Monday, 9:30-10:45AM, Petra Fibrichova, 510-520-4523
Yoga
Thursday, 9:30-10:45AM, Carol Fisher, 925-566-4181
Dance Moves Me
Tuesday, 1:00-2:30PM, Debbie Sternback, 510-653-8362
Rock Steady Boxing
8 classes/week-call for times, Jimmy Greninger, 925-785-1272
Tremble Clefs
Thursday, 1:30-3:30PM, Michael Grupp, 925-451-3389

Please contact activity instructor for further details and fees.
Announcements, Meetings and How to Reach Us
The Tremble Clefs
Mt. Diablo Tremble Clefs will improve the volume and clarity of your voice through enjoyable free weekly singing sessions. Don’t let your voice fade away. We meet Thursdays 1:30-3:30 pm in Lafayette. For more information please contact chair
Michael Grupp at (925) 451-3389.
Help Wanted: Volunteer Audio-Visual Technician

Volunteer for Parkinson's disease support group that meets at Grace Presbyterian Church near Rossmoor. Familiar with PowerPoint, laptop computers (PC or Mac). Able to set up and operate slide projector, amplifier, microphones. Third Saturday of each month from 10:00 a.m. to 12 noon. Please call 925-939-4210.

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 Norman Kibbe, (nkibbe@aol.com) (925) 935-9322 .

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: Beth Donegan (949) 680-9133 or craig.donegan@yahoo.com
Publicity: Beth Donegan (949) 680-9133 or craig.donegan@yahoo.com
Treasurer: Amy Van Voorhis (925) 932-5036 or pnmdtreas@astound.net
Membership: Ken Kuhn (925) 588-9837 or kenkuhn56@yahoo.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: Cindy Gershen ( 925-932-1028) or cindymgershen@gmail.com
Tremble Clefs: Michael Grupp (925) 451-3389
Caregiver Discussion Group: Norman Kibbe (925) 935-9322 or nkibbe@aol.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
DBS: TBD
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.