January 2018 PNMD Online Newsletter is here!

The Shaky Times

-- Online Edition --

January 2018

Here's what's inside:

Carol Fisher on relationships between Parkinson's patients and caregivers

Book and handout recommendations in the library

Member Profiles spotlights Cindy Gershen

How laser equipped shoes may help in walking

PNMD needs a proofreader and editor

Volunteering with PNMD

The next meeting, announcements and how to reach us

You Have Parkinson’s. What About Your Loved One(s)?

By Carol Fisher

“When everything goes to hell, the people who stand by you without flinching--they are your family.” ~ Jim Butcher

Having a neurological disease like Parkinson’s disease (PD) can feel overwhelming. The symptoms are ever-present. Your body continually reminds you that you have PD. It can be quite difficult not to be absorbed by it.

While you are busy trying to figure out how to manage your body and your life, the people around you— your partner, your children, your friends—can feel just as overwhelmed, confused and burdened by the PD “monster.” What to do?

As much as possible, be mindful and connected to yourself, your medication cycle, and your daily routine of self-care.
Communicate clearly with your loved ones about your needs and feelings so they do not have to guess what is going on with you.
When your body and mind need rest, honor that.
As your PD progresses, the people in your life may take on a growing share of the household chores. To keep the workload as balanced as possible, clearly identify tasks that you are willing and able to do.
Encourage your loved ones to communicate their thoughts and feelings about how PD is changing your lives—and how you can manage it together. Don’t let PD be the elephant in the room!
Find ways to give your partner a break. Send her to the spa for an afternoon. Give him some baseball tickets. Order take-out for dinner. Have it delivered or picked up by Uber.
Find ways to laugh together. Enjoy a movie comedy; look at old photographs; play a game— whatever makes you feel happy.

Don’t delay getting a caregiver, even if it’s only for a couple of hours a week. If your partner or family is getting increasingly burdened and exhausted, it may be time.

Of course, this journey isn’t easy. But there are ways to manage it well. (And ways to avoid managing it!) The choice is up to you. Why not give yourself, your family, and your friends the gift of clear and loving communication?

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 namastecarol@gmail.com. Visit her website at www.innerkeyyoga.com.

The PNMD Library

This month, Abraham again features Do No Harm by Dr. Henry Marsh. Abraham says don't let the medical terminology in Table of Contents stop you from reading this book- dive in and read the book!

For January's handouts, Abraham is recommending two:

Exercise May Aid Parkinson's Disease, but Make It Intense . This is from the New York Times from 12/13/2017.

Finding Purpose for a Good Life. But Also a Healthy One. This is written by Dr. Dhruv Khullar, M.D., M.P.P. and is very current being a Jan. 1, 2018 article.

The handouts are free to members on the library table at the meetings and the book is free to borrow.

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 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 hzalk510@gmail.com .)We 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

Cindy Gershen- chef, teacher, caregiver

You’ve seen Cindy Gershen around a lot at PNMD meetings and events. She’s usually involved with the food and beverage side of things helping Rynette in the kitchen or sometimes catering everything from either her Walnut Creek restaurant, Sunrise Bistro, or through her “Edu-catering” teaching project at Mount Diablo High School. Yes, Cindy is a very busy lady. She’s also married to Lance Gershen, the PNMD co-president.

Cindy grew up in the Bay Area. She loves to cook, garden, teach, read, watch foreign films, listen to music, travel and spend time with family. Her two passions, children’s health and the environment, manifest themselves in her program at Mount Diablo High School where she combines gardening and environment stewardship, cooking, nutrition and vocational skills in a series of classes that she developed from scratch and now manages.

She met Lance in the mid-90s. Between the two of them, they had 8 children so there was a lot to blend together. But they all got along we'll so three years later, Cindy and Lance married. They loved life, family and each other.

Six years ago, Lance started to notice some tremor in his thumb and other changes in coordination. Lance is a doctor so he consulted with a medical professional who thought it just might be getting older. But symptoms gradually got worse. Finally Lance got the diagnosis- Parkinson’s. Their world changed that day.

Cindy says she felt like the sun went down in their lives. But after a lot of tears and family time, they decided to rally and live the best life possible for as long as they could. They stepped up the travel and have been to many places both in the US and internationally. The bucket list includes lots of theatre in New York. Plus they are huge sports fans so there have been trips for sporting events as well as rooting on the Bay Area teams.

In Cindy’s eyes, Lance has been a trooper through everything. But things are changing as the Parkinson’s progresses. Fortunately they have a very supportive family and lots of friends. For the last 5 years, they have had the Parkinson’s Network of Mount Diablo- a place where they know they are not alone in what they are going through. They value the additional support and inspiration from their friends there and members.

“Its hard on our whole family and sad sometimes as we see our husbands, fathers and friends slow down and Parkinson’s taking over. We take it one day at a time, sometimes one moment.” But Cindy says they hold onto the love in their hearts and never give up hope for a breakthrough on a new drug or a new adventure. “Hope is what we have and there’s is plenty of love, joy and friendship to go around. Keep moving, singing, laughing and loving. And most of all, never ever give up.”

Laser-Equipped Shoes Help Parkinson’s Patients Take the Next Step

By Devin Coldewey SOURCE:techcrunch.com

Here’s an unexpected but pleasant little way tech might be able to improve a few lives: laser shoes. Yes, seriously. Shoes equipped with small laser emitters were shown in recent tests to help sufferers of Parkinson’s disease to walk normally.

One of the possible symptoms of Parkinson’s is what’s called gait freezing, where a person finds them- selves unable to take a step despite willing themselves to walk forward. Being unable to move for the dura- tion of the freeze (anything from a few seconds to over a minute) is inconvenient, but it can also cause a person to lose their balance and topple over.

Interestingly, during a freeze, a person may be able to break out of it by concentrating on something near their feet that they can step towards or over, such as a floorboard or a crack in the sidewalk. Of course, such a feature is not always present. So what if you could manifest one on demand?

That’s the idea behind the laser shoes, imagined by the University of Twente’s Murielle Ferraye: each one has a laser projection device mounted to the toe that produces a line about 18 inches ahead — a line towards which the user can then step. The laser turns off while the shoe is in motion, so it’s only ever the resting foot that projects a line.

A study of 21 Parkinson’s patients found that the laser shoes reduced incidents of gait freezing by nearly half, and cut the duration of those freezes by more than half. Most of the patients said they would be happy to use the shoes, and didn’t mind that the line was projected even when they were not frozen. Future work, Ferraye explained in a university news release, will be aimed at activating the laser only when a freeze is detected.

The research was published in the journal Neurology.

PNMD Desperately Needs a Proofreader and Editor!

Do you like to write? Are you good at spelling and grammar? We urgently need volunteers who can proof- read and edit Shaky Times articles, web content, press announcements, brochures, and other material. If you’re interested, we’d like you to take the editing test below.

Please edit the following posts from a Parkinson’s chat room. Correct all errors, and improve the style. Email the corrected essay to Howard Zalkin at hzalk510@gmail.com . Good luck!

Question: My uncle that I only met twice,the second time being at his funeral i found out that he had parkin- sons.I need to know if this disease is carried down,heriditary? Please can someone let me know I have 4 kids of my own now,thankyou!

Answer: Parkinson's Disease is now believed to be more so caused by environmental factors and not as much hereditary as what they thought in the past. If more than one person in a family has Parkinson's it doesn't mean that it was hereditary it means that both of the people could have been subjected to the same type of environmental factors. For instance, welders have a high instance of having Parkinson's disease and if your dad did had a home business where he did lot's of welding while you were growing up and he devel-oped Parkinson's Disease and you sat there and watched your dad welding all of the time and now years later you developed Parkinson's Disease it doesn't mean that it was hered-itary, it's because you were both exposed to to same thing, the fumes given off from welding. I hope this eases your mind a little bit. [ End of Edit Testing]

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The Parkinson Network of Mount Diablo Needs Volunteers

Our organization is in desperate need of volunteers to help keep the meetings and operations going smoothly. You've seen from the above article that we need a proofreader/editor to replace Howard Zalkin who will be leaving us soon to live back East. But that's not the only help that we need. We're also looking for people with-

Computer skills in Word, Powerpoint, Excel or Constant Contact
Audio/visual skills
Fundraising skills
Writing, editing and newsletter skills
Web development and social media skills

You don't have to commit large blocks of time or be there at every meeting. Even if you help a few hours a month or can assist with the monthly meetings, your assistance would be greatly appreciated not only by the board but also by the membership.

Please contact Cathy Hostetler either by phone at 925-932-5285 or via email at cathyhostetler@hotmail.com.

Announcements, Meetings and How to Reach Us

Donations

Patricia W. Hosel in memory of Harold V. Hosel

Jim and Mary Drennan

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: http://www.v-dac.com/org/?id=943297100 .

If you have any questions, call the vehicle donation program at 877-999 8322.

Or contact Howard Zalkin at hzalk510@gmail.com.

2018 Annual Dues – Still $50

PNMD annual dues are still $50 per household. Enclosed with the print issue of the Shaky Times is a self-addressed reply envelope for your payment. Please affix first-class postage .

If you're ready to pay your dues online, you can do so on the PNMD website right here . You can use your credit card or PayPal through our easy PayPal portal.

Thank you for supporting PNMD!

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 Lafa- yette. For more information please contact chair Michael Grupp at (925) 451-3389.

The January Meeting

Our meeting this month will feature Lori Santo from Rock Steady Boxing and Bob Wolf, the author of "Honey I Sold the Red Cadillac."

Lori is all about using the techniques of boxing to help with muscle control and coordination for people with Parkinson's through the Rock Steady Boxing program. Not only is it fun and a great workout but it's been shown to help counter some of the effects of Parkinson's. We'll hear from Lori about what is available and when locally and how to participate. Rock Steady Boxing is for both men and women so come out and learn how to deliver that knock-out punch to Parkinson's!

Bob Wolf is one of our own members. He's written a book called "Honey I Sold the Red Cadillac" about dealing with his wife's struggle with Lewy Body Dementia. He'll discuss what he and his wife have gone through as well as the book. The book is for sale of course and Bob will know how to get a copy or two for yourself or family members. Ask Abraham if he has any copies in the PNMD library available for checkout.

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 (jgriehl@gmail.com) 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 (sandchu@aol.com) (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 (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. 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: https://pnmd.net

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 Lancegershen@gmail.com

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:

randolphsegura@gmail.com.

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.