The Shaky Times
-- Online Edition --
August 2018
Here's what's below:
August Meeting Speaker

Supporting Your Nervous System

"You Don't Look Sick" 

Ninety Years in a Nutshell

Call for Contributions

Information and Resources Library

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

Saturday, August 18, 2018

Presentation: Deep Brain Stimulation for Parkinson's Disease:
Rationale, Evaluation, and Emerging Technology
Speaker: Dr. Maxwell B. Merkow

Dr. Merkow’s many areas of clinical interest include functional neurosurgery, including the implantation of deep brain stimulation devices for the treatment of PD and essential tremor. He received his medical degree from Columbia University, and completed a seven-year residency in neurological surgery at the University of Pennsylvania. Dr. Merkow practices at Bay Area Neurosciences and has privileges at John Muir Medical Center – both in Walnut Creek.

Refreshments: Catering will be underwritten by Medtronic and presented by Cindy Gershen and her Mt. Diablo High School Students.

Li Supporting Your Nervous System
By Carol Fisher

The function of the nervous system is to transmit sensory information to the brain for processing and to transmit motor information from the brain for action.

If you are a person living with Parkinson’s, your nervous system is pedaling as fast as it can to keep up with the myriad ways that it is being challenged. You are faced with the increasing challenges of managing movement and of all the simple tasks of daily living. Things take longer and require more mindfulness. Some combination of frustration, sadness, anger or apathy can ensue.

So how can you support your nervous system as it works hard to manage these physical and mental/emotional issues?

1.        Good Nutrition – There is a lot written about what type of diet best supports our bodies and particularly bodies with PD. Some people I work with are having excellent results following a system put forward in a book called The Plant Paradox by Steven Gundry, MD but most of us know that avoiding sugar and red meat and eating organic are a good place to start.
2.        Drink plenty of water and if you still don’t feel well hydrated, adding electrolytes to your hydration program.
3.        Spend time outdoors. Feeling the sun on your face, the grass under your feet and the breezes on your face and being near plants, trees and water are tremendously nourishing to the nervous system.
4.        Spend time with people you love and enjoy. Minimize time spent with those people or situations that feel upsetting to you on some level.
5.        Take showers and/or baths or use a swimming pool. Water at different temperatures helps to balance the nervous system and the feeling of the water on your skin is calming.
6.        Establish a simple meditation practice. Find a place in your home or yard that is comfortable, close your eyes and simply follow your breath. Five to ten minutes once or twice a day or any time that you feel overwhelmed or stressed can do wonders.
7.        Move your body. Take a walk, put some favorite music on and dance or just move with the music, ride a bike, swim or do anything else that you enjoy.
8.        Laugh! Watch a funny movie or Podcast. There is now so much easily available online. Don’t forget to laugh at YOURSELF!!!
9.        Learn something NEW!! Having different things to think about keeps us out of the habitual ways that we sabotage ourselves with our worrisome thinking.
10.     Find a way to volunteer, give back, or help someone you know in some simple way. JOY is in the GIVING!!!
11.    Find a community who gets what you’re going through, so you have a place to explore and get feedback for your challenges, awakenings and thoughts and feelings. We have the wonderful resource of the Parkinson’s Network of Mt. Diablo and there are many, many PD Support Groups online. YOU ARE NOT ALONE!
12.    Understand and educate yourself about PD as much as you can. INFORMATION IS POWER!!

In my experience of working with people with PD, the beautiful thing that I hear over and over is: “ I am a better person because I have PD.” The fact that it is a requirement to bring more mindfulness and awareness to yourself, your relationships and your everyday life provides the opportunity for a deepening of self-understanding and a kind of richness that may not have otherwise been present in your life.

"You Don't Look Sick"
Parkinson's News Today: 7/11/2018

“Invisible” disease : a disease that is not necessarily visible to the human eye; hidden; concealed from others.

Parkinson’s disease (PD) can be known as an “invisible” disease. However, since PD is most commonly characterized by tremors in the extremities and shaking , most people don’t think of it as an invisible disease. But many don’t understand that some people with Parkinson’s don’t actually experience shaking or tremors. Occasionally, these people will tell patients that they are “faking it” or that it “isn’t that bad” because they show no obvious signs of the disease.

I have heard of some PD patients who take over 50 pills a day just to feel “normal.” I can assure you that their “normal” is much different than most everyone else’s. Instead of having obvious tremors in the extremities, a person with PD can experience tremors on the inside, making it even more incomprehensible to someone who doesn’t know much about PD. They might assume one must have external tremors to have the disease. But when I think back to when my symptoms began, I remember feeling as if my insides were shaking like crazy. There was nothing I could do to make it stop.

“But you don’t look sick,” a friend might comment. What does a person with PD look like?

Well, one can have brown hair and blue eyes, be 40-ish, and have tremors and nothing else. One can have gray hair, 72 years of age, a stooped walk, a shuffling gait, seem a bit confused, and have tremors and more. One can be 28, an athlete, run marathons, and never seem to have a physical problem in the world.

When I went to the World Parkinson’s Congress almost two years ago, I think the thing that struck me most was the diversity of how PD affects people. No two people wear it the same. I have Parkinson’s disease, and you’d think I wouldn’t be surprised by the various differences — but I am.

You’d also think that I wouldn’t have been surprised to hear from several other people with PD say to me, “You don’t look like you have PD.” We ourselves who live with Parkinson’s get stuck on the stereotype of this disease as well.
So, I ask again, “What does a person with PD look like?” Maybe I should ask, “What is a person with PD supposed to look like?”

Most people would undoubtedly bring Michael J. Fox to mind, using him as the “poster child” for a frame of reference. He kept his disease hidden from the public for several years. He didn’t “look like he had Parkinson’s.” He didn’t “look sick.” He didn’t “look that bad.” Maybe he was “faking it.”

“Smile. Life can’t be that bad,” I have heard a couple of people say to me. How do you explain to an absolute stranger that you have a disease that takes away your smile and even though joy may fill you on the inside, you don’t look that way on the outside? How do you explain how bad it can be when your drugs aren’t working well, and you can barely move your back and neck due to the stiffness and pain?

You don’t look “sick” when you are struggling with heart issues, Alzheimer’s disease, a kidney problem, find a lump in your breast, deal with twisted intestines, suffer from hemorrhoids . . . need I go on? And yet, we can have a bad case of acne, a broken arm, a wound that won’t heal, or a dislocated shoulder, and are not considered sick. Maybe we need to redefine “sick.”

There is a crazy misperception that to be sick, the rest of humanity must have evidence that convinces them you’re not faking it and that your illness just may be worse than they can understand it to be; it may be an illness they cannot necessarily see, and you, as the patient, may not be able to explain it fully just yet. An invisible disease. A disease that may not look like anything to someone else, but if you’ve got it, it’s something indeed.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Ninety Years in a Nutshell
By Skip Hoyt
Today is my 90th birthday and I’m looking over my long, amazing life with gratitude. I was raised in Pasadena with 2 older brothers and parents I deeply respected. I was a healthy, happy teen who loved playing football, both in high school and at Stanford. I always had a job, and during the Depression, I was in charge of the neighborhood “Victory Garden.” After getting my BA and MBA at Stanford, I worked for IBM for 36 years and I enjoyed every job I had within that highly respected organization.

I was married for 41 years to a lovely woman I met at Stanford, and we had 3 fabulous children. She passed away in 1991 after a ten-year battle with breast cancer. This was a truly traumatic time for me as, up until that time, most everything I had done in my life had turned out well.
Our children encouraged me to date one of my wife’s dear friends and when I was ready, I followed their suggestion. Susie and I have now been married for almost 26 years and our years together have been very special on many levels. Susie has 4 boys, so our combined families have brought and continue to bring many happy moments to my life. We traveled to many places I thought I’d never see. We have many friends and before moving from Palo Alto to Rossmoor, we were both very active in our community. After moving to Rossmoor 9 years ago, we realized how fortunate we were to have made this decision. Though it was difficult to leave all the friends and involvements we had in Palo Alto, we became actively involved in Rotary and other groups that made our life full and always interesting.

One of the most important involvements we have is with my stepson’s Meditation group on Monday evenings. We have found these evenings to be highly complementary to our involvement in Lafayette Orinda Presbyterian Church. I find a daily meditation practice to be extremely helpful to me each and every day, and I enjoy reading books that encourage my practice. The reminder to live in the present moment, instead of worrying about the future or reliving past experiences, has helped me maintain better balance.

One of the most difficult challenges I’ve faced in this lifetime has been developing Parkinson’s Disease. It has restricted me in ways I never expected and certainly didn’t plan for. Giving up driving was especially difficult for me and I felt trapped and angry. My body had always been my friend and now it was betraying me. My energy level wasn’t what it had been my whole life, my stability was changing, my voice was weakening, my sense of smell was gone – yet, I haven’t developed a tremor. Sometimes my memory isn’t good, and I can’t tell what stems from natural aging and what is part of Parkinson’s.
What I find in this process is a willingness to do what I can and let go of what I can’t. I can do this much of the time, but sometimes the frustration gets me down. I try to follow the Serenity Prayer :

God grant me the Courage to change the things I can, the Serenity to accept what I cannot change, and the Wisdom to know the difference.

The wisdom part is the most difficult for me. What I do know is that we’re all in this together – we can encourage each other, support each other and move forward with dignity and courage.     
 July 16, 2018

Call for Contributions
By Derek L Ransley, PhD

It has been proposed that we have a segment in the Shaky Times titled Personal Stories in which members contribute short personal stories related to their own tangle with Parkinson’s. The focus is on the positive and humor is encouraged. Tentatively, I am suggesting that the stories be 300-800 words and contributors may be men and women with PD or caregivers. Writers are encouraged to find a punchline. Examples of such stories are those that I contributed to the June and July Shaky Times.

I see a number of positives to this experiment.
  • PD tends to gum up the works, which makes it difficult for some of us to express ourselves verbally. Now we have an avenue to open up.
  • As a therapy, writing benefits some of us. We all have stories in us.
  • We are a self-help group so why not contribute? We need you!
  • Paraphrasing, “Ask not what PNMD can do for you but what you can do for PNMD.”
  • If you prefer, we will keep your contribution anonymous.
  • E-mail your stories to Derek Ransley at dransley@comcast.net.

Please overwhelm me.

Derek

Donations
Thank you to the Rossmoor Rotary Foundation
for their generous donation!

Information and Resources Library
In August another new book will be added to the Library - "Full Catastrophe Living" by Jon Kabat-Zinn, PhD. This important book introduces the reader to a program he developed at the University of Massachusetts Medical Center in Worcester, Massachusetts called Mindfulness-Based Stress Reduction (MBSR). The clinic first opened in 1979. This successful 8-week program introduces the participant to mindfulness, which he defines as "moment-to-moment non-judgmental awareness." The practice of meditation allows one to pay attention to our lives and thus become aware. Awareness helps us connect with our inner selves where we have the resources to help alleviate pain, stress and illness. It takes conscious effort but the sense of peace and well-being that follows is the reward. It works, as many who have brought his program into their lives can tell you. This book is the second edition, published in 2013.

The speaker at our August meeting will be Dr. Maxwell B. Merkow. The topic is "Deep Brain Stimulation for Parkinson's Disease: Evaluation and Emerging Technology." This surgical therapy was first developed in Grenoble, France in 1987 by Alim-Louis Benamid, M.D., PhD - a neurosurgeon and a professor of biophysics. The procedure was approved by the FDA for use in the U.S.A. in 1997. It is a therapy used worldwide with more than 150,000 patients with PD having benefited from DBS. How electrical stimulation of the brain in certain areas provides relief of motor symptoms of PD is not clearly understood to this day. The surgery is elective. Not all patients with PD are candidates for this procedure. Handouts regarding DBS will be available at the Library table.

T he Library opens at 10:15 a.m. and will remain open after the main speaker is finished. Please browse our material of various types - books, handouts, NPF brochures and lists of resources. If you need help with traveling in Contra Costa County, look at the publication, "Way to Go, Contra Costa!". It is a valuable transportation resource guide produced by Mobility Matters in Lafayette, CA. All books must be signed out. Please return them at the next monthly meeting so that others can have a chance to read them. 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, 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.
Arvid Carlsson, Who Discovered a Treatment for Parkinson's, Dies at 95
Dr. Arvid Carlsson, a Swedish scientist whose discoveries about the brain led to the development of drugs for Parkinsonʼs disease and earned him a Nobel Prize, died on June 29. He was 95.
Announcements, Meetings and How to Reach Us
Help Wanted
Volunteer Audio-Visual technician for Parkinson's Network of Mt. Diablo meetings. 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 at Grace Presbyterian Church.
Please call 925-939-421.
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.