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

August Tri-Valley Meeting Speaker

7 Habits for Managing PD and LIFE

Parkinson's Comedy Sketch

Loss of Motivation

Parkinson's Patients with Generalized Pain Sleep Poorly

Information and Resources Library

Exercise and Activity Classes

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

Saturday, August 17, 2019 - General Meeting - 9 am-Noon
Grace Presbyterian Church, Walnut Creek

Presentation: "Be Heard"
Speaker: Katie Ty Warren

Katie launched Be Heard in March 2017. Using relaxation, exercise, games, muscle training, and music we’ll explore the importance of maintaining the right to speak up and be heard. From core strength to diction, volume to facial expression, communication exists within the whole body.

August Tri-Valley Meeting Speaker

Saturday, August 10, 2019, 10 am- Pleasanton Senior Center

Presentation: New Rock Steady Boxing Location in Danville
Speaker: Daniel Burkhardt, Owner and Certified Coach

Daniel will present the essence and beginnings of Rock Steady Boxing (RSB), designed to help those who fight for a better life with Parkinson's. His "Fighters" take on specific exercises and work out routines that teach intensity and intentional movement as well as stretches to combat rigidity. As a leader and coach, Daniel's motto is to "be of service to others and never be a victim to life's circumstances.... Being challenged in life is inevitable, being defeated is optional." 
            
7 Habits for Managing PD and LIFE
By Carol Fisher

1. MEDITATE:  In his book, The Art of Happiness, the Dalai Lama says, “If you want others to be happy, practice compassion. If YOU want to be happy, practice compassion.” He calls compassion and happiness “the purpose of life.” Quiet meditation – whatever that means to you – allows us to defeat negative emotions and focus on inner love and peace – which reflects back to those around us. “Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.”

2. LISTEN: Listening has long been an act of love; one we need to do with friends and family – and OURSELVES. Your life is always speaking to you. We have a lot of different speaking voices inside of us…the one that tells us about all of the “should”, the one that wants to kick back and be lazy, the one that wants life to be “like it used to be”, the one that has “goals and wishes”. Which voice is in the driver’s seat? Is that the one that you really want to be listening to?

3. MOVE: WE all know that movement is “the other medicine” for those with PD. It’s a fact that all of us feel better when we MOVE. Find some forms of movement you enjoy. Perhaps do them with people you enjoy. Find ways to challenge and delight yourself…. walk in nature, dance around your living room, sing at the top of your lungs, be silly, do yoga, ride a bike, get a trainer, box…. just MOVE!

4. IMAGINE: Harvard psychologist and author of Mindfulness, Ellen Langer, says: “Imagine the best version of yourself and put it out there. “Don’t let age or PD or anything else be a roadblock to self-improvement. “Instead of mindsets that suggest debilitation. There can and should be growth throughout life,” says Langer. “We generally get what we expect, so it’s time to change to positive expectations for ourselves.”

5. FORGIVE: Nelson Mandela once said, “We must strive to be moved by a generosity of spirit that will enable us to outgrow the hatred and conflicts of the past.” Resentment, anger, disappointment and myriad other feelings and emotions sit like a heavy weight in our bodies and spirits. Forgiving ourselves as well as others is tantamount. Each moment is a clear and pure new moment if we allow it to be.

6. LEARN: It’s easy to get stuck in our own worldview. We tune into news that affirms our beliefs. We read books by people who share our opinions. It’s human nature to seek out opinions that validate ours. We would all benefit from looking for new ways of understanding and viewing each other and the world.

7. REACH OUT: Find ways to share and give of who you are, what you know and how you love and care. Doing something and giving to others is where the real joy is found. What you do DOES MAKE A DIFFERENCE.
 
Life is always speaking to you.
Are you listening?

Carol Fisher, Registered Yoga Instructor, namastecarol@gmail.com
 925-566-4181
Parkinson's Comedy Sketch
By Mark Ouyang

Hi, everyone. My name is Mark and I have Parkinson’s. I received my diagnosis one year ago.

Now the good news is that Parkinson’s is not a death sentence. They say you will probably die with Parkinson's, not from it. The bad news is how it impacts your quality of life.

So, what does that mean exactly? That the rest of my life is now a slow-moving train wreck? Not necessarily.

Because being a technology gadget guy - the way I view it - my quality of life just got an upgrade!

You see, now I can legitimately justify buying that Tesla Model Y with autopilot and full self-driving features. (Honey, we are going to need it. Really! Sooner than we think).

And the latest Apple Watch - you know, the one that automatically calls for help in case I fall, and don’t get up after a minute or so. “Dick Tracy to headquarters, Dick Tracy to headquarters. Calling all cars!” (Honey, we are going to need it. Really! Sooner than we think).

And let’s not forget about the wheelchair accessible walk-in tub with hydrotherapy jet sprays for those constantly stiff and cramped muscles. (Honey, we are going to need it. Really! Sooner than we think). 

But realistically, the quality of life upgrade I see getting soon is the electronic, self-cleaning, warm water bidet. You know, the device that washes your business away and blow dries your behind? When the day arrives that I can no longer wipe my butt, my persuasive plea will be similar, but slightly different. (Honey, …. Can you help me?...... I can’t quite seem able to…. Could you….?). Bada Bing! It’s an automatic upgrade!

Parkinson’s provides all sorts of “Quality of Life” upgrades if you look for them. Take, for example, recreation.

We often have masked facial expressions. People can’t infer your emotional state. They don’t know if you are mad or indifferent even though you are paying rap attention. You can be screaming on the inside, no one can tell. Hmmm, no tells. Anyone up for a friendly game of poker?

When it comes to eating, you get what I call the “Parkinson’s Potato Chip” pass. Because when you struggle with low blood pressure, salty snacks can help keep blood pressure up and prevent you from fainting and falling. Cheetos anyone?

Got tremors? No longer have the fine motor skills or muscle coordination to safely cut your finger or toenails? Congratulations! You just received a lifetime, guilt-free pass, (typically reserved only for the rich and famous), to enjoy regular manicures and pedicures.

Then there is the ultimate “permission” pass. Are artificial, man-made medications no longer providing pain relief? Or causing severe side effects? Difficulty falling or staying asleep? Welcome to a complete, exploratory membership in the cannabis club!

Parkinson’s can also leave you with a soft, whispering voice. You may find it improves your persuasion skills. People get closer and listen harder to hear what you have to say. When you always sound like Don Corleone, the Godfather, people think twice. Especially if you say, “Let me make you an offer you can’t refuse.”

I am sure you have your own Parkinson’s “quality of life” upgrades to share.
So, upgrade or downgrade? It’s a choice. They say the quality of life you experience with Parkinson’s will depend a lot on your perspective. Taking a cue from Michael J. Fox*, I’ll be looking for the Parkinson upgrade whenever I can.

* “I have no choice about whether or not I have Parkinson’s. I have nothing but choices about how I react to it. In those choices, there’s freedom to do a lot of things in areas that I wouldn’t have otherwise found myself in.”
 
Mark Ouyang, PNMD TriValley Group, email: mark.ouyang@gmail.com
Loss of Motivation and 'The 8 Disciplines of a Parkinson's Patient'
By Stephen Bergenholtz

Stephen Bergenholtz of West Seattle, Washington is committed to living well with Parkinson's. Here, he shares how he made adjustments in his lifestyle and mindset to overcome the loss of motivation associated with his Parkinson's.

Parkinson's disease (PD) made me lazy, I told myself as I wallowed in lassitude for years after my diagnosis. The loss of dopamine-producing cells in those with PD affects not only one's physical ability to move, but the motivation to move as well. How do you climb out of this pit, when you don't feel like doing anything at all?

One strategy I used was to change my perspective. Instead of forcing myself to enjoy activities I should do, I searched for things that I enjoyed doing in the first place and let the appeal of the activity substitute for loss of motivation. To my surprise, I discovered new activities that I love, like playing pool, photographing landscapes, tossing a softball with a friend, or throwing stones at scrap of wood floating in a lake. Learning to do new things can be fun, if there is an early reward in the form of a new skill. Before long, engaging in these enjoyable activities had a spillover effect, motivating me to do "un-fun" activities, such as exercising, on a regular basis.

For me, another substitute for loss of motivation is simply discipline. The word "discipline" may have negative connotations, but all it means is regular repetition of an activity until eventually it becomes comfortable, even pleasant. It's like learning to drive a manual transmission car.

Next, I thought about the practices and activities which helped me the most in dealing with Parkinson's. I shared this list with my friends who have Parkinson's and circulated it among support groups in our area. I refer to this list as "The 8 Disciplines of a Parkinson's Patient":

  1. I will meet regularly with my doctor, follow his or her advice and find a new doctor if he or she becomes unavailable.
  2. I will take my prescribed medications, track my medication supplies and discuss any side effects with my doctor.
  3. I will follow a personalized exercise program in consultation with medical and fitness professionals.
  4. I will make good sleep habits a priority and reduce factors which inhibit me from getting a good night's rest.
  5. I will foster an attitude of optimism and well-being and strive to alleviate stress through fun and healthy activities.
  6. I will remain engaged with my family, friends, caregivers and others, resisting the tendency to withdraw socially.
  7. I will read about maintaining a positive outlook grounded in my faith beliefs or my spiritual development.
  8. I will contribute to the Parkinson's community by giving my time, talents, money, or by participating in medical trials.

As every person with Parkinson's is different, every person's journey with the disease is different. What motivates you? What are your personal "disciplines"?     
 


Parkinson's Patients with Generalized Pain Most Likely to Sleep Poorly, Study Finds
By Catarina Silva
ParkinsonsNewsToday.com, July 16, 2019

People with generalized pain related to their Parkinson’s  are prone to disturbed nighttime sleep, a reason these two disease symptoms — central parkinsonian pain and poor sleep — are common together and may imply share mechanisms, a study reports.

Most Parkinson’s patients experience disease-related non-motor symptoms that often precede the onset of hallmark motor problems. Non-motor symptoms can include anxiety, mood changes, cognitive impairment, sleep disturbances and pain, all affecting patients’ quality of life.

Depending on its origin, pain in Parkinson’s can be classified into five distinct subtypes. One, called central parkinsonian pain , is believed to be the only subtype directly caused by the disease, resulting from abnormal pain information processing (the way the body perceives pain) that leads to pain sensations even though no anatomic or physiological reason can be found. As such, it is considered a neuropathic pain.

Evidence suggests pain is associated with sleep disturbances in a bidirectional manner, with pain disrupting sleep and sleep deprivation increasing pain. But the link between central parkinsonian pain and sleep disturbances has not been explored.

Researchers set out to identify predictors of sleep disturbances and to investigate the relationship between sleep disorders and pain in Parkinson’s disease.

Their study enrolled 229 people (122 men and 107 women, mean age 69) diagnosed with Parkinson’s and with a mean disease duration of nine years. Each had their level of sleep disruption, pain complaints, anxiety, depression, motor symptoms , and functional independence assessed by clinically validated scales.

Results showed that 33% of patients had clinically relevant sleep disturbances, 57% had motor fluctuations, and 71% experienced pain. “Of those with pain, 38 (24%) had central parkinsonian pain,” the study stated.

Patients with sleep disturbances experienced more pain and had more severe motor symptoms, lesser independence in daily activities, more evidence of anxiety and depression, and poorer quality of life.

Those with central parkinsonian pain were more likely to have disturbed sleep — even after considering the possible influence of motor symptoms, motor fluctuations, pain intensity, and symptoms of anxiety and depression — than were patients with other types of pain.

“The study results also demonstrate that the association between quality of sleep and pain in PD depends on pain subtype,” the researchers wrote. Musculoskeletal and dystonia-related pain “were the most common subtypes of pain … [but] only central parkinsonian pain was significantly related to an increased risk of sleep disturbances.”

General population studies show that sleep deprivation alters pain processing and increases sensitivity to pain, while a healthy nighttime sleep routine can reduce pain perception .

“ The close relationship between central parkinsonian pain and sleep disturbances in PD [Parkinson’s disease] raises the possibility of common pathophysiological mechanisms,” the team concluded, adding this may relate to the loss of dopamine caused by the disease.

Further research is necessary to better understand the relationship between sleep disturbances and central parkinsonian pain and may help doctors trying to manage these symptoms in patients.

Library and Information Resources
To Members and Friends:

More and more we are learning about the pluses and minuses of medical marijuana in conditions and diseases including Parkinson's. It is a complex and challenging issue with a lot of research being generated as more and more states are making the use of marijuana legal within their boundaries. It is still a schedule one drug under federal law, however. This classification is set by the DEA (Drug Enforcement Agency) which classifies marijuana as being of no medical value and of high potential for abuse, along with heroin and LSD. It is illegal to prescribe this substance in any form. A recent series on The PBS News Hour was quite informative about this subject.

In August there will be two new books available from the lending library concerning marijuana. One is titled The Medical Marijuana Guide: Cannabis and Your Health . It is by Patricia Frye, M.D. Dr. Frye practices in Maryland. She retired from pediatrics and became interested in the emerging field of medical marijuana. She has treated thousands of patients and shares her experiences in her book, which also includes recipes. She believes a patient's quality of life can be improved with appropriate and informed use of cannabis. The second book, Medical Cannabis: A Guide for Patients, Practitioners, and Caregivers is by Michael H. Moskowitz, M.D., PMH. Dr. Moskowitz has a long career in pain management and has a practice in the Bay Area. He is a co-founder of Neuroplastic Partners, LLC, a company "dedicated to the promotion of Neuroplastic treatment for persistent pain". There still is inconclusive evidence that cannabis has a role in the treatment of PD. However, this is being studied and its role in pain control, anxiety, nausea and other less specific symptoms seems evident.

The library table will be open for your perusal at 10:15 a.m. Please pick up any handouts that you find interesting or sign out a book or two. There are also brochures, some business cards, and other reference materials available. Please feel free to make suggestions and ask questions.

Janice Ransley, M.D. Library Chair
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, 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.