The Shaky Times
-- Online Edition --
July 2018
Here's what's below:
July Meeting Speaker
Special Program for Caregivers

What is Self-Compassion and Why is it Useful?

Parkinson's Can Cause an Unusual Breathing Issue 

The First Few Minutes

I Do, Too

Donation Acknowledgement

Nutrition Corner

Information and Resources Library

Meetings, Announcements, and How to Contact Us
July Meeting Speaker

Saturday, June 21, 2018

Presentation: Redefining and Finding Balance with Parkinson’s Disease ( How to make everything easier )
Speaker: Lena Hart

Ms. Hart teaches the Alexander Technique at The Academy of Art University in San Francisco and has a private practice. She is an experienced postural and ergonomics specialist, helping students and clients become aware of the harmful, habitual physical choices they make in daily life to enable them to reduce pain and improve their abilities. She is a graduate of the Alexander Education Center of Berkeley and holds an MFA from the University of Tennessee and a BA from Washington University in St. Louis..

Presentation at the Caregivers Support Meeting (9-10 in the Sanctuary): Cognitive Decline
Speaker: Aaron Daley
 UCSF Parkinson’s Disease Clinic and Research Center

This is part of an educational program series, designed specifically for caregivers of patients with Parkinson’s Disease.

Li What is Self-Compassion and Why is it Useful?
By Carol Fisher

Having PD can be exasperating, difficult, frustrating and confusing to us and to those around us. Self-compassion is an invaluable tool for managing life and for gifting those around us with the very best of ourselves.

Self-compassion is composed of a combination of self-kindness, common humanity and mindfulness.

Self-compassion entails being warm and understanding toward ourselves when we suffer, fail, or feel inadequate, rather than ignoring our pain or flagellating ourselves with self-criticism or pity. Self-compassionate people recognize that being imperfect, having an illness and experiencing life difficulties is inevitable, so they tend to be gentle with themselves when confronted with painful experiences rather than getting angry when life falls short of set ideals. When this reality is denied or fought against, suffering increases in the form of stress, frustration, anger and self-criticism. When this reality is accepted with sympathy and kindness, greater emotional well-being is experienced.

Frustration at not having things exactly as we want or had imagined is often accompanied by an irrational but pervasive sense of isolation – as if “I” were the only person suffering. The very definition of being “human” means that one is vulnerable and imperfect. Therefore, self-compassion involves recognizing that suffering and personal inadequacy is part of the shared human experience – something that we all go through rather than being something that happens to “me” alone. By recognizing our essential humanity, failings and life difficulties do not have to be taken so personally but can be acknowledged with non-judgmental compassion and understanding.
Self-compassion also requires taking a balanced approach to our negative emotions so that feelings are neither suppressed nor exaggerated. This equilibrated stance stems from the process of relating personal experiences to those experiences of others who are also suffering, thus putting our own situation into a larger perspective. It also stems from the willingness to observe our negative thoughts and emotions with openness and clarity, so that they are held in mindful awareness. Mindfulness is a non-judgmental, receptive mind-state in which one observes thoughts and feelings as they are, without trying to suppress or deny them. We cannot ignore our pain and feel compassion for it at the same time. At the same time, mindfulness requires that we not be “over-identified” with thoughts and feelings, so that we are caught up and swept away by negative reactivity.

Parkinson's Can Cause an Unusual Breathing Problem
Keith Roach, To Your Health
Record Search Light, Redding, May 28,2018

Dear Dr. Roach: My husband has Parkinson’s disease. He also has a stent in his heart. We have been to many doctors to address a breathing problem: fast breathing. He experiences this daily, and we are told that it is anxiety. It is difficult to watch him go through this. It sometimes happens before he is due for his Sinemet, but other times right after taking it.

He has been prescribed Xanax, Clonidine, Cannabidiol-infused gummies and a few others. One doctor says it is from Parkinson’s, but the rest say it is anxiety.

E.W

Dear E.W.: Shortness of breath can have many causes, but someone with Parkinson’s disease has an unusual possibility, called “respiratory dyskinesia” (which just means “abnormal movement of the muscles of breathing”). This is an involuntary rapid breathing that causes distress, and it usually happens an hour after taking a medication like Sinemet. Changing the dose can help with diagnosis and working with a neurologist to adjust the dose of the Sinemet (which comes in fast-acting and slow-release formulations) can solve the problem. I would start with an expert on Parkinson’s. Keeping a diary of when he takes his medication and when the breathing trouble starts and stops will be helpful, as would a video of what it looks like when happening.

Having Parkinson’s doesn’t make someone less likely to have other causes of shortness of breath, and anyone with a stent in the heart (meaning a history of blockages of at least one heart artery) is at risk of developing further blockages. Poor blood flow to the heart is another potential cause. Get the Parkinson’s evaluation first.

I would not recommend taking anti-anxiety medications unless there is clear evidence of benefit. Ascribing a physical symptom like shortness of breath to anxiety without a thorough workup is unwise.

The First Few Minutes
By Derek L Ransley, PhD
It occurred to me that when I wake in the morning, a number of others with PD are going through much the same activities as I do. We are not alone. If we knew each other better, we could compare notes.

I start taking stock while in bed. I am usually aware that that peripheral neuropathy is causing a burning sensation in the soles of my feet. I then turn off the CPAP machine (I also have sleep apnea). I sit on the side of the bed to equilibrate. I have a history of heart disease and the team that monitors me insists that I do that because those with PD have problems with hypotension. I take my first dose of Sinemet. If I don’t do it now, I might forget. I recently installed a full-length mirror for my wife, which I try to avoid looking at. But I do look to see if I am standing straight. (I’m not!)
I head for the bathroom to empty my bladder per instructions from the Heart Team.  I weigh myself naked because I am supposed to alert them if I have a weight change of 2 lbs. or more. I may feel chilly, so I jump back in bed as my caregiver awakens. It is amazing how her smile and voice chase away my worries. (Yes, I have those, too.) There is supposed to be a hint of humor in my story.

We do 15 minutes of floor exercises on our yoga mats. These I learned from Kaiser’s PT for PD class. Now it is time to figure out what day it is.

I Do, Too
By Derek L Ransley, PhD

When I first heard of PNMD, I didn’t feel inclined to participate. I thought that I would encounter people who were worse off than I was. I thought that might depress me even more. I thought that having my head-in-the-sand was a good strategy. I was fortunate that friends from a different activity also were PNMD attendees. They were enthusiastic about the benefits and encouraged us to come to the next meeting. That was 17 months ago. We’ve only missed two meetings and these were for planned family travel.

So, what’s the draw? What’s the appeal?
The answer to those questions requires some concentrated thinking, which isn’t in great supply. It has something to do with camaraderie. We’re companions in the same boat. We know what it is like to experience PD which is not true for most of the doctors and neurologists that we encounter. I’d like to share a little story with you.

I recently attended a meeting of PWPs, which included their caregivers. I noticed that a fellow sitting opposite me looked as if he had a problem similar to one that bothered me. At the break, I introduced myself. After chatting briefly, I said to him, “I have a problem with drooling.”  He said, “So do I.” I realized that those three words explained why people attend our PNMD meetings.

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


In Memory
  • Norman Kingshill in memory of Barbara Kingshill
Nutrition Corner
Oatmeal Cookie Protein Shake
from Inshape.com


Protein is vital for building muscle, boosting fitness, maintaining bone health and a healthy weight. It’s also been shown to help fight aging. But getting enough can be hard for some folks. So, we tested out this delicious drinkable version of everyone’s favorite childhood cookie that delivers a dose of protein and a whole lotta flavor. It’s OAT-standing!

Not only does this smoothie pack a protein punch, but the oats are high in beta-glucan fiber that helps reduce cholesterol and blood sugar levels, promotes healthy gut bacteria and increases satiety. Oats may lower the risk of heart disease by reducing both total and LDL cholesterol and protecting LDL cholesterol from oxidation. Dig in!

 Blast in a blender and savor the flavor of dessert for breakfast:

  • 1 cup of milk or milk alternative
  • 1 serving of vanilla protein powder (we used Vega Protein & Greens)
  • ⅓ cup rolled oats, raw
  • 1 tsp vanilla extract
  • 1 tsp flaxseeds
  • 1 tsp maple syrup
  • 1 tsp of ground cinnamon
  • A pinch of sea salt
  • ½ cup of ice
  • Garnish with a sprinkle of cinnamon and toasted oats or granola
Information and Resources Library
Do you wonder what some of the research about Parkinson's Disease is looking at in the laboratory and in clinical trials? Michael S. Okun, M.D. wrote a book titled "10 Breakthrough Therapies for Parkinson's Disease”, in 2015. Dr. Okun is Co-Director of the University of Florida Center for Movement Disorders and Neurorestoration, one of the busiest clinics worldwide, specializing in DBS and its complications. He is Chair of the UF Department of Neurology and has devoted his medical career to PD. He is also Medical Director of the Parkinson's Foundation. Defining "breakthrough" as a "sudden increase in knowledge, improvement in technique, or fundamental advancement in understanding," he has composed ten chapters discussing various aspects of treatment. These vary from drugs to surgery, and marijuana to vaccines. He shares some scientific data and ideas with the reader that give credence to the complexity and molecular nature of the disease. The "Take Home Points" at the end of each chapter provide a helpful summary. There will be copies of this book available in the library. Please sign out one with your name and phone number on the sign out sheet and return it at the next meeting so others can have a chance to read it.

The guest speaker this month will be discussing issues regarding balance and PD. Loss of balance is a common problem for people with PD. It can lead to unsteadiness, which results in falling, and possible injury. Postural instability is one of the 4 primary motor symptoms of Parkinson's. The exact mechanism of this symptom is not well understood. Some patients are less impacted by this than others. Articles about this important symptom will be available on the library table.
The library opens at 10:15 a.m. and will remain open after the main talk. There are books about various aspects of PD, Lewy Body Disease, caregiving and various activities that are helpful in managing symptoms. There are also some pamphlets from the Parkinson's Foundation (which have to be signed out) as well as information about community resources and articles of general interest. If you have any questions or suggestions, please mention them to 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, Murthy Jarugumilli, 925-864-2890
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.
Neil Diamond Tribute Performer Jack Wright
July 14 Concert Supports Parkinson's Awareness
 When Neil Diamond announced his retirement from active touring in November, it really hit home for Jack Wright – a national-touring Neil Diamond tribute performer. Jack has been watching as his great friend and career-long personal manager, Lou Goldstein, fights back against the debilitating effects and life-style changes of Parkinson's.

Jack is now committed to supporting local, regional and national Parkinson’s groups by promoting awareness of available support services at every performance, and by donating $1 of each show ticket to various Parkinson’s support groups.

Jack’s next show is at the Dougherty Performing Arts Center in San Ramon on July 14 th  at 7 pm. See a preview video and learn more at  www.jackwrightshow.com .
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.

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.