January 2020 "Shaky Times"

The Shaky Times

-- Online Edition --

January 2020

Here's what's below:

January General Meeting Speaker

January Tri-Valley Meeting

Willing Hearts.....THANK YOU!

Parkinson's and Breathing

The Survey Says - Part 5

Great News!....New Editor

Information and Resources Library

Donations

Exercise and Activity Classes

Meetings, Announcements, and How to Contact Us

January General Meeting Speaker

Saturday, January 18, 2019 - 9 am-noon

Grace Presbyterian Church, Walnut Creek

Presentation: Non-Motor Symptoms in PD

Speaker: Dr. Jason Massa, DO, East Bay Neurology

Dr. Jason Massa is a board-certified Neurologist specializing in Movement Disorders, with special interest in the comprehensive treatment of patients with Parkinson’s Disease. Dr. Massa attended Touro College of Osteopathic Medicine and completed his residency training at Kaiser Permanente in Los Angeles and Fellowship training in Movement Disorders at the University of Pittsburgh Medical Center. Dr. Massa’s fellowship training focused on the diagnosis and management of Parkinson’s Disease and Dystonia, including the use of deep brain stimulation and botulinum toxin. Additionally, he engaged in research into the relationship between genetics and environmental factors in the development of Parkinson’s Disease. Dr. Massa is Board Certified in Neurology and Movement Disorders.

January Tri-Valley Speaker

Saturday, January 11, 2019, 10 am-noon

Pleasanton Senior Center

Presentation: Parkinson's Institute and Clinical Center

Speaker: Brian Coulter, CEO of the Institute

Brian Coulter, Chief Executive Officer of the Parkinson's Institute and Clinical Center in Sunnyvale will focus on updates about the Institute, current research, as well as programs and services available. Bring your questions about the Parkinson’s Institute and its programs! You may want to consider being part of the pursuit to a cure and deeper knowledge by volunteering to participate in a research program.

To the Willing Hearts....THANK YOU!

Dear Members and Friends,

We love the Holiday Season. Music, friends, family and neighbors create an elevated feeling of joy! As we reflect further and our thoughts are surrounded with a cloud of peace and gratitude, we realize that there is another element to that feeling of joy and blessings. It is in knowing that all that has happened throughout the year at our support group, Parkinson Network of Mt. Diablo, is due to the service and hard work of our volunteers. It is these Willing Hearts who keep us connected and updated in the world of Parkinson. It is our honor to wish each one of them a Special Happy New Year and to say ‘THANK YOU’ for your service to our community. The following First names are most of you but perhaps not all who we would like to recognize for the 2019 year:

Amy .................. Sara .................... Larry .................. Bill

Ellen ................. Gary ................... Jane ................... Marjorie

Sara .................. Bill ...................... Ronnie .............. Teresa

Cathy ................ Reggie ............... Elysa .................. Paula

Janice .............. Joan ................... Sandy ................. Priscilla

Beth .................. Carol .................. Rynette .............. Paula

Cindy ................ Jodi .................... April ................... Less

Ken ................... Betsy .................. Katie .................. Gary

Mary .................. Art ...................... Heather .............. Beverly

Norman ............. Petra .................. Rick .................... Jeha Family

Mitchell ............. Debbie ............... Mary Ann ............ Rossmoor Rotary

Derek ................. Lena .................. Glen .................... Judy

Rosemary .......... Michael ............. Craig ................... Kyle

Ronalee ............. Sarah ................. Dennis ................ Mary

Jan ..................... Elizabeth ........... Linda .................. Sara

With Thankful Hearts,

Abraham Raja & Lance Gershen

Co-Presidents (PNMD)

Parkinson's and Breathing

By Dr. Keith Roach

"To Your Good Health" article; med.cornell.edu

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.

ANSWER: 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 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 Survey Says...Part 5

The Survey Says ……. 55% of our responders have sleep issues or Sleep Apnea (SA). Experts are somewhat cagey when asked if SA is a PD symptom. They might say that those with PD are more prone to have SA. The layman may not recognize SA for what it is, and snoring might not be considered as serious. However, the SA sufferer may “forget to breathe” for quite long periods. Testing is definitive so check with your doctor.

Fatigue is a significant issue for 30% of our colleagues and another 51% had mild issues. For some it was their biggest problem. Experts refer to it as a “common but unrecognized problem”. It is a special type of tiredness. It is draining and not necessarily relieved by sleep. Another definition of fatigue is “an unpleasant sensation of lacking energy, making performance of routine activities physical and mental become a strain.”

A secondary concern is that one’s caregiver may interpret the lack of activity as malingering.

Two-thirds of us are concerned with loss of cognition and this is true for those with PD and their caregivers. Cognition is a general term that refers to the abilities that we use to process information and apply knowledge. It includes but is not limited to working memory. It also includes attention, executive function, visuospatial function and dementia. Not everyone with PD has cognitive changes beyond those of normal aging.

58% of our participants took regular naps. In some cases, Sinemet was said to be the culprit. Those who enjoy naps have a smug look when talking about them. It reminds me of the nature movies on TV when the animal walks in circles creating a nest. I will admit that the recliner that my wife bought for me has become a special comfort zone.

Derek Ransley, Facilitator, Men with Parkinson’s, PNMD

Library and Information Resources

To Members and Friends:

Happy New Year! Change is one thing we can all be certain will happen. 2020 will see a change in the Library Chair position. I have thoroughly enjoyed being involved with the library and trying to provide information and support for our members and their family and supporters for the past two years. It is time for me to step aside.

Fortunately, Rick Stevens has agreed to assume the position of Library Chair beginning this month. Rick has an interesting background in education as an elementary school teacher and reading specialist as well as teaching in high school and earning his Administrative Credential in the Graduate School of Education at U C Berkeley. Since retiring in 2012 he has worked as an education consultant and coach. He has also made teacher training films and developed a website (https://edtune.com/). He writes a blog associated with the website and enjoys working with the computer. The PNMD Board has welcomed Rick and we are certain our members and friends will enjoy meeting and working with him.

Linda Madden will continue to provide her able assistance to all at the Library Table. Teresa Wu will help Linda. So, we will have an excellent team ready to help you obtain the information you need in dealing with PD, and perhaps some resources that you did not realize were available.

Remember - the Library Table opens at 10:15 and stays open during and after the general meeting. We will continue to provide paper handouts, brochures, business cards of various practitioners, books for you to sign out, and lists of resources on the internet. If you have any suggestions or something specific that we can help you with, please ask us. We accept donations of books that have been gently used.

It is not too late to get your flu shot if you have not yet done so.

Janice Ransley, M.D. Library Chair

Michael J. Fox Foundation Public & Policy Forum

Bill Clinch (third from left), local PNMD member and moderator of our general meetings, visits Washington, DC for the annual Public & Policy Forum of the Michael J. Fox Foundation, September 2019.

“No one understands Parkinson’s Disease better than those who live with it every day. When people with PD and their loved ones share their stories with lawmakers, they play a critical role in shaping legislation that affects our community.”

Great News!.....New Editor

Dear Members & Friends,

For the last two years it has been my pleasure to serve as the Editor of The Shaky Times. Now with great joy I introduce to you Jodi Barry as the New Editor of our Newsletter. Many of you know her as your Yoga Instructor. I am grateful to have a person like Jodi among us. Her knowledge and calm thought process with a keen sense of observation is an asset not only to the Newsletter but to the PNMD organization.

Jodi, we appreciate you and welcome you.

Abraham Raja

Co-Chair PNMD

Donations

Thomas Nock (vehicle)

Jodi Barry

Petra Fibrichova

Brian and Alexa Donahoe

Marion and Douglas Larson in memory of Carole Kafel

In honor of Dr. Lance Gershen's 75th birthday:

Wendy and Bill Dorband

Sharon and Ron Brown

Santo and Jan Alioto

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Parkinson's Wellness Recovery, Walnut Creek

Monday, 9:30-10:45 AM, Petra Fibrichova, 510-520-4523

Yoga, Walnut Creek

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

Monday and Wednesday, 11:00 AM - 12 PM, Lena Hart, 917-806-7929

Tremble Clefs

Thursday, 1:30-3:00 PM, April Wakeman, 925-276-0463

Rock Steady Boxing, Danville

Tues. & Thur., 12:30 - 2 PM, Daniel Burkhardt, 925-471-5432

Rock Steady Boxing, Concord

Classes Mon. - Sat., Call for times, Multiple coaches, 925-785-1272

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:

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

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. Moderator: Bill Clinch. There is no charge, but annual membership is $50 per year per family.

9:00 to 10:15 a.m. – Three concurrent Support Group meetings:

Men with Parkinson’s Disease meet in the Fireside Room at Grace Church. Contact person is Derek Ransley, dransley@comcast.net, 925-944-0162.

Women with Parkinson’s Disease meet in the Library at Grace Church. Contact person is Rosemary Way, rose.way@sbcglobal.net, 925-939-7665.

Caregivers meet in the Sanctuary at Grace Church. Contact persons are: Jan Alioto, jalioto@comcast.net, 925-890-8937; Sara DeZerega, saradezerega@aol.com, 925-377-1004; Janice Ransley, jeransley@comcast.net, 925-944-0162.

10:15 a.m. to 10:30 a.m.-Refreshments in the Oak Room. The PNMD Library, with books, flyers, and videos is open at this time. Please bring cut-up fruit or your favorite snack to share.

10:30 a.m. to 11:45 a.m. Guest speaker (See information above) Oak Room.

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 Bardsley, 925-831-9940 and Mary Behrendt, 925-989-0209.

Web site: https://pnmd.net

General Information Phone No.: (925) 939-4210

President: Abraham Raja (925) 381-0688 or anraja@att.net

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:

Fundraising Chair: Ken Kuhn (925) 588-9837 or kenkuhn56@yahoo.com

Tremble Clefs: April Wakeman (925) 276-0463 or adwakeman@yahoo.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

Caregiver Discussion Group: Jan Alioto (925)890-8937 or jalioto@comcast.net; or Sara DeZerega, saradezerega@aol.com, 925-377-1004; or Janice Ransley, jeransley@comcast.net, 925-944-0162

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.