The Shaky Times
-- Online Edition --
November 2017
Here's what's inside:
Carol Fisher writes on meditation and why it's helpful with Parkinson's

Abraham Raja shares a new book and the Handout of the Month
from the library

Member Profiles spotlights Lance Gershen, co-president of PNMD

Rock Steady Boxing is featured in Neurology Now

We share information from the Rare Disease Report on the new time released Amantadine

The next meeting, announcements and how to reach us
Parkinson’s Disease and Meditation

By Carol Fisher 

“Be here now.” ~Ram Dass
Why is meditation helpful for people with PD?
Meditation reduces stress, promotes tranquility and allows us to become more mindful. Simply stated, medi- tation creates in you a stress-free, relaxed and happy place. Sharon Saltzberg says, “Meditation is essentially training our attention so that we can be more aware – not only of our own inner workings but also what’s happening around us in the here and now.”
Meditation can consist of sitting quietly while holding a peaceful thought, listening to peaceful music in a comfortable, safe place, following a guided meditation on a CD that helps us to relax the body, walking safe- ly in a peaceful place while using our senses to connect with our surroundings or simply sitting or lying down and following our breath.
When you have a nervous system disorder like PD, the nervous system is working overtime to support the body and manage symptoms like tremor, stiffness, anxiety, freezing, tiredness and others. Meditation can support the nervous system and “give it a break.” It can calm us, relax us, and relieve us from the constant “sensations” that PD creates.
From a scientific viewpoint, Pickut and Associates report that “Mindfulness based intervention in Parkin- son’s disease leads to structural brain changes on MRI”. (You can read the report at https:// MRI’s showed that Parkinson’s patients who practiced mind- fulness showed an increase in grey matter density in several areas of the brain: the hippocampus (left and right), amygdala (right), caudate nucleus (right and left), occipital lobe (left) and thalamus (left). PD is known to adversely affect these brain regions.
Sometimes people think that meditation requires a great deal of practice. In fact, meditation is always just practice. There’s no right or wrong way to do it. You’re not doing it “wrong” if your mind wanders off in various directions. It is simply the practice of gently bringing your attention back to the present moment. It’s as if you’re re-booting your brain and nervous system—giving them a different baseline from which to operate. Meditation can give us a break from the tedium of PD, and bring us a feeling of peace and tranquili- ty. Ommmmmm......... 

Carol Fisher is a registered Yoga Instructor and a certified Parkinson’s Wellness Recovery Instructor. She has been teaching movement to people with PD for the past eight years, and has worked extensively with John Argue. She can be reached by phone at 925-566-4181 or via email at Visit her website at 
The PNMD Library
The November Book of the Month is "Do No Harm" by Dr Henry Marsh. Here's the synopsis from Google:

"What is it really like to be a brain surgeon, to hold someone's life in your hands, to drill down into the stuff that creates thought, feeling and reason? How do you live with the consequences of performing a potentially life-saving operation when it all goes wrong? In this powerful, gripping and brutally honest account, one of the country's top neurosurgeons reveals what it is to play god in the face of the life-and-death situations he encounters daily. Henry Marsh gives a rare insight into the intense drama of the operating theatre, the chaos and confusion of a modern hospital, the exquisite complexity of the human brain, and the blunt instrument that is surgeon's knife by comparison."

Abraham's Handout of the Month is Caregivers Draw Support By Mapping Their Relationships . Check in with him at this month's meeting to get a copy. He also recommends an excellent handout on emergency home preparedness.

If sleep is an issue, and for many it can be, Abrahams recommends a website from Dr. Stasha Gominak. You can reach the site here:

And a final note- the library will be closed during the Holiday Party in December. If you would like to get a book or any of the handouts, please be sure you get them at this month's meeting.

Abraham Raja, the PNMD librarian is always on the lookout for new books, periodicals, medical journals and company pamphlets that provide information and insights into Parkinson's Disease, medical research on the disease and other related topics.

The library is open for business at the monthly meeting. Peruse the free booklets, brochures and other items of interest. Check out a book. Have you read a book on Parkinson’s that others may like? Give Abraham the name and it will be added to the library. Donate books of interest. Sharing helps everyone.  
Book Review
We didn't have anyone do a book review this month. If you would like to read a book from the PNMD library or even a Parkinson's related book that might not be in the library, please let us know. (You can email Howard at love hearing what people like and don't like about our titles. It's also a great service to our members to provide insights on our books.
Member Profiles
Lance Gershen, PNMD Co-President
Lance Gershen was born in Spanish Harlem. He was the Caucasian minority and didn’t attend kindergarten. Many years later a book was published called, "All I Need to Know I Learned in Kindergarten." His kids still tease him about the important lessons he missed out on.

Lance lived with his grandparents who were 1 st generation Jewish Russian immigrants. Becoming American was what they were all about. He learned early that good grades were the pathway to a successful life.

Lance attended great schools, one of which was Stuyvesant High School, an all male public school at the time. It produced more PHD’s than any school in the US. From there he went on to Brooklyn College for 4 years. Why? The trees. It felt like the country as opposed to City College.

Lance worked hard and was accepted to Albert Einstein Medical College. That was where his path first crossed with PD. The college was doing the early research on L Dopa and he remembers standing behind a PD patient and getting annoyed when it took them so long to count out their change. Little did he know the disease would have the last laugh.

On graduating medical school, Lance set out to find his surfer girl in Los Angeles at LA Childrens Hospital. But no surfer girls came knocking. Maybe it was the long hours at the hospital or that he never had time to go to the beach. Either way, there went the fantasy!

But Lance loved Pediatrics. The kids and the docs all seemed to be having a good time and didn’t take themselves too seriously.

The Navy took up some of Lance's time during the Vietnam War. He was lucky though and never even got on a ship having served all of his time on land.

Back in civilian life, Lance decided to leave the LA area and to practice in Contra Costa County. He joined the Concord Pediatric Group, which later became Diablo Valley Pediatrics. He served as Pediatric Dept. Chairman at local hospitals John Muir, Mt. Diablo and Sutter Delta. He was also President for East Bay Pediatric Society. Lance was in pediatric practice nearly 40 years.

With his wife, Cindy, they raised a family that now consists of 8 children, 13 Grandchildren and a few dogs and cats. Cindy is his partner as they walk through this phase of their life together. She's the founder of the Sunrise Bistro and the Wellness City Challenge and Lance's inspiration on a daily basis. He says he's a lucky man!

His proudest achievements were developing the first Alternative Birth Center in the East Bay, a Father’s Support group which was also a first, and a champion Softball team.

Lance was diagnosed with Parkinsons Disease five years ago. He was lucky that his diagnosis did not force him to retire since he was already winding down his career. He learned about PNMD when he was diagnosed and came to a meeting the first week. The support group fit him perfectly. It let him connect with others with the same condition. Lance was honored to take a leadership position and urges others to do so. He believes, 'Family, friends and people with Parkinson's are all in it together. We need the information brought to us by experts in the field and we need the emotional support we receive from others. We all need to stay connected, socially and challenge ourselves to be strong and help others.

If you would like to tell your story, let me know. I think some of the most interesting articles we can read are people's stories and especially how they overcame or dealt with adversity like Parkinson's. Those stories can be inspiring, humorous or sometime just informational about what someone did to affect their situation. So contact me if you would like to tell your story. I can be reached at . Please put Member Profile in the subject line so I'll recognize what it is right away.
Parkinson's on the ROPES
This article is taken from a piece in the October/November 2017 edition of Neurology Now. The full article with photos can be seen at the following link:

When Preston Moon was diagnosed with Parkinson's disease at age 53 in 2008, he never dreamed he'd be bobbing and weaving in a boxing gym or pounding punching bags one year later. After learning that the condition would progressively impair his motor function due to a loss of brain cells that produce the chemi- cal messenger dopamine, he thought he had little to look forward to but a steady decline. Then, in 2009, his next-door neighbor in Indianapolis mentioned Rock Steady Boxing, a local nonprofit program she'd attended that used boxing to manage the symptoms of Parkinson's disease.

Moon was skeptical. “I'm a retired Army sergeant first class, and physical training was something I did but didn't necessarily enjoy,” he says. “The last thing I wanted to do was work out again.” But with little to lose, he decided to check out the program. What he saw at the gym was surprising: People were punching small speed bags and large heavy bags, doing footwork and balance exercises, and performing calisthenics. “It was people of all ages, male and female, and they were—excuse my French—going balls to the wall,” Moon says. “I thought, ‘These guys have Parkinson's?' It changed my attitude immediately.”

He's been boxing three or four times a week ever since. Eight years later, he feels strong, does push-ups, can run, and rides a motorcycle. His disease has affected him cognitively, slowing his thinking and making it dif- ficult to come up with timely assessments and solutions in his work as a systems analyst, which is why he recently took long-term disability from his job. “But physically,” Moon says, “I don't look or feel like I have Parkinson's.”

Moon was an early convert to an exercise regimen that's expanding nationwide. The earliest proponent was Rock Steady, founded in 2006 in Indianapolis by Scott C. Newman, a community leader who was diagnosed with Parkinson's disease and found that boxing helped with some of his symptoms. Together with Kristy Rose Follmar, a former professional boxer with world and Indiana state titles, he developed a program using a variety of training exercises—pummeling a speed bag, for example—to address symptoms such as loss of hand-eye coordination. Variety, fun, camaraderie, and intensity—but no actual fighting—are core elements of the program, with exercises designed for people of different abilities and in different stages of the disease.

Rock Steady now has affiliates around the country, and other programs have cropped up, too. These are often led by former professional fighters, such as Paul Delgado of Livramento Delgado Boxing Foundation (LDBF) and PD Gladiators in Atlanta, Mark Royce and Tate Wheeler of Knock Out Parkinson's in four loca- tions in Minneapolis-St. Paul, MN, and Paulie Ayala of Punching Out Parkinson's in Fort Worth, TX.

The programs share many characteristics. For instance, the prospective instructors often have had experience working with people who have Parkinson's disease, says S. Elizabeth Zauber, MD, associate professor of clinical neurology at Indiana University School of Medicine and an early member of Rock Steady's board of directors. Further training for prospective coaches usually involves learning more about boxing and Parkin- son's, as well as how to structure a class.

All participants are assessed based on observations from coaches, as well as tests that measure abilities such as balance, gait, and grip strength. Boxers are then placed in classes appropriate for their level of function or follow customized workouts. “The assessment helps us get to know the people,” says Rock Steady executive director Joyce Johnson, whose mother had the disease. Coaches also factor in age, fitness level, other health problems, and cognitive abilities, says Dr. Zauber. “If someone can't do something, instructors need to be able to adapt exercises and levels to that person's needs.” 

FDA Approves First Drug for Dyskinesia in Parkinson's
Written by James Radke on the Rare Disease Report website

The U.S. Food and Drug Administration (FDA) has approved Gocovri (amantadine) extended release capsules for treating dyskinesia in patients with Parkinson’s disease who are receiving levodopa-based therapy.

Parkinson’s disease is a neurodegenerative disorder due to a loss of dopaminergic neurons in the brain. While Parkinson’s disease is not a rare condition, the dyskinesia that develops in patients receiving the common treatment levodopa is qualified as a rare disease in the United States (affecting less than 200,000 people). Approximately 150,000 to 200,000 people with Parkinson’s disease are believed to suffer from the dyskinesia that develops from levodopa treatment.

Amantadine is a weak NMDA antagonist, but has also been proven to increase dopamine release and block dopamine reuptake, and was granted an Orphan Drug Designation by the FDA for treating dyskinesia in levodopa-treated Parkinson’s patients.

The approval was based on data from 2 Phase 3 clinical trials showing the drug to significantly reduce Unified Dyskinesia Rating Scale (UDysRS) total scores (37% in the first trial and 46% in the second). Patient-reported diaries showed the drug allowed for an increase of 3.6 and 4.0 hours in daily functional time (defined as ‘on time’ without troublesome dyskinesia) compared to 0.8 and 2.1 hours in the placebo-treated patients in the 2 studies. Furthermore, Gocovri reduced ‘off time,’ or periods of the day when levodopa is not working well, by approximately 1 hour.

The most common adverse reactions (>10% and greater than placebo) with Gocovri were hallucinations, dizziness, dry mouth, peripheral edema, constipation, fall and orthostatic hypotension.

The drug was developed and will be marketed by Adamas Pharmaceuticals.

According to the company, the drug is expected to be available in January 2018 and patient assistance program, “Gocovri Onboard” has been organized to team with patients, families and physicians to obtain access to the drug via reimbursement support, prescription fulfillment and financial assistance.

In a  news release , “Gocovri’s approval is an important advancement for the treatment of Parkinson’s disease, as it is the first FDA-approved medicine for the treatment of dyskinesia in Parkinson’s disease patients,” said Rajesh Pahwa, M.D., Laverne & Joyce Rider Professor of Neurology at the Kansas Medical Center and Director, Parkinson’s Disease Center of Excellence at the University of Kansas Health System. “Notably, Gocovri is the first Parkinson’s disease medicine proven in controlled trials to reduce both dyskinesia and off time in Parkinson’s disease patients receiving levodopa. Treatment of dyskinesia and off time continues to be an unmet need in the medical management of Parkinson’s disease and the approval of Gocovri is a major step in that direction.”

“Today’s approval is a tremendous milestone for Adamas and for the Parkinson’s disease community,” said Gregory T. Went, Ph.D., Founder, Chairman and Chief Executive Officer of Adamas Pharmaceuticals, Inc. “Gocovri has the potential to help people with Parkinson’s disease suffering from dyskinesia by finally providing physicians with an effective tool to address this long-standing unmet medical need. We thank the physicians, clinical staff, patients and their families who participated in the clinical trials for making this advancement possible for the community.”

This article was taken from the Rare Disease Report website at Rare Disease Report provides the latest FDA news and research on rare diseases.

Announcements, Meetings and How to Reach Us
Barbara McBeth in memory of Ruth Buchs

Ruth M. Eastman in memory of Ruth Buchs  

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

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 Howard Zalkin at 

The November Meeting Featured Speaker

For our November 18th meeting, Susan O'Grady, Ph.D. will present  Finding Emotional Balance When Dealing with Difficult Feelings.
Susan O’Grady, Ph.D. is a psychologist who has practiced individual and couples psychotherapy for over 25 years. She is a certified Gottman Relationship Therapist. She integrates cognitive approaches with mindfulness approaches and is a credentialed Mindfulness-Based Stress Reduction teacher and Mindfulness-Based Cognitive Therapy teacher. Dr. O’Grady is the Ethics Chair of the Contra Costa Psychological Association. She is in private practice with her neuropsychologist husband, Dr. David O’Grady.

    General Meeting Information:

Board Meeting:
First Monday of each month, 10:15A.M. Hillside Covenant Church, 2060 Magnolia Way, Walnut Creek.

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 Gregg Riehl ( at (925) 254-8349.
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 per- son is Sandy Clark ( (925) 944-0769.
Caregivers Only: Caregivers discuss issues relating to their roles. Meeting location is the Sanctuary at Grace Church. Contact person is Norman Kibbe ( (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. Sunrise Bistro will provide refreshments that will be underwritten by Acadia Pharmaceuticals 10:30a.m. to 10:45a.m. Welcome new members announcements

10:45 a.m. to 11:45a.m. (In Oak Room) Guest speaker: Dr. Marylyn Stebbins. See her info above.

11:45 a.m. –noon-Q&A, Wrap up: General questions may be directed to Howard Zalkin at (925) 939-4210 ; Lance Gershen, Program Chair (925) 932-1028; or Sandy Mitchell, Asst. Program Chair (925) 687-3976. Web site: 

Contact Us

General Information Phone No.: (925) 939-4210
Chairs: HowardZalkin(925)939-4210
Lance Gershen (925) 932-1028
Past President: Ronalee Spear (925) 284-2189
Vice Chair: Ken Kuhn (925) 588-9837
Secretary: Betsy Fowler (925) 314-1875
Treasurer: Amy Van Voorhis (925) 932-5036
Membership: Ken Kuhn (925) 588-9837
Communication: Ronnie Wanetick (925) 933-6357
Program Chair: Lance Gershen (925) 932-1028,or email
Asst. Program Chair: Sandy Mitchell (925) 687-3976
Parkinsonian Services: Greg Riehl (925) 254-8349
Librarian: Abraham Raja (925)681-0315
Community Outreach: Michael Grupp (925) 451-3389
Administrative Coordinator: Krystin Radke (925) 336- 9554
Tremble Clefs: Michael Grupp (925) 451-3389
Board Mtg.: Open to all members.
Caregiver Services: Norman Kibbe (925) 935-9322
DBS: Art Fowler:(925) 314-1875
Donations and Memorials: Please mail to P.O. Box 3127, Walnut Creek, CA 94598.
Newsletter Editor: Randolph Segura (925) 872-1927 Please email submissions by the 15th to:
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 accu- racy, completeness or usefulness of any information presented. The editor’s opinions are strictly his own.