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

November Tri-Valley Meeting Speakers

Dental Health and Parkinson's

It's Gotta be Fun!

PNMD Survey...Part 3

The Search for a Cure Starts with your DNA

Nutrition: Soba Noodle Soup

Information and Resources Library

Exercise and Activity Classes

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

Saturday, November 16, 2019 - 9 am-noon
Grace Presbyterian Church, Walnut Creek

Presentation: Alexander Technique
Speakers: Lena Hart

Lena Hart is an AmSat Certified teacher of the Alexander Technique. She has also been working with the local Parkinson’s community for over a year with group classes (Mondays and Wednesdays at 11am) and through private lessons at her studio in Walnut Creek. The Alexander Technique is an educational method used worldwide for well over 100 years. By teaching how to change faulty postural habits, it enables improved mobility, posture, performance and alertness along with relief of chronic stiffness, tension and stress.

Please bring cut-up fruit or your favorite snack to share.
November Tri-Valley Meeting Speakers

Saturday, November 9, 2019, 10 am-noon
Pleasanton Senior Center

Presentation: Caregiving All Aspects
Speakers: Jeanie Slater, Family Caregiver Support Coordinator
Lorie O'Sullivan, Caregiver Registry Administrator

Jeanie Slater provides services for those caring for family members. Jeanie will present advice and information on assessments, care planning, resource referrals, monitoring and reassessments, counseling and support groups.

Lori O'Sullivan will share information regarding home care providers.
            
Dental Health and PD
By Carol Fisher 

Oral health is essential for everyone, but people living with PD need to pay particular attention to their mouth, teeth and gums to limit any increased risk of infection from cavities, inflamed gums, loose teeth or abscesses. This is one of those things that people often think is “the least of their worries”, but dental infection can undermine the health of the whole body.

As fine and gross motor coordination, tremors or stiffness affect the ability to execute the nuanced movement of tooth brushing and flossing, it can be more challenging to maintain dental health.

Before addressing issues of brushing, here are some suggestions for keeping your hands and mouth as agile as possible.
1.     Keep some squeeze balls near places where you sit and use them while watching TV, relaxing chatting or whatever.
2.     Find ways to stretch your hands by flattening them on a table, stretching your fingers one by one, making tight fists and then opening your hands wide and however else you can keep them challenged.
3.     Exercise your lips, teeth, tongue and jaw by flubbering your lips, making a “razzberry” sound, doing “fish lips” or kissy lips.
4.     Make sure your lips touch each other when you say words. Articulate clearly and purposefully.
5.     Push your tongue as far out as possible and push it into your cheeks and around your teeth.
6.     Open your jaw as wide as possible and make vowel sounds as you do.
7.     Sing, yawn and make goofy faces. (watch yourself in the mirror!)
8.     Massage your cheeks and jaw. Keep all of those mouth and facial muscles moving.

And for cleaning and brushing your teeth…….
1.     Drink plenty of water and try to keep snacking sugar free.
2.     Use an electric toothbrush.
3.     Use a WaterPik.
4.     Sit down while brushing and incorporate the exercise of brushing into a meditation.
5.     If doing a thorough job on the whole mouth at once is too much, try doing ½ in the morning and the other half later in the day.
6.     Consider having your teeth professionally cleaned more often – perhaps every 3 months rather than every 6 months.
7.     Ask your dentist for tips or products that may help to keep possible infection from occurring in your mouth.

Smile big and kiss the ones you love......the absolute best ways to exercise your face, jaw and lips!!! 

Carol Fisher, RYT, PWR Instructor
Inner Key Yoga Restorative Gentle Personalized Yoga for Every BODY
Specializing in Parkinson's Disease. Cell: (925) 566-4181
It's GOTTA Be FUN!
Be Heard! Voice for Parkinson’s is a holistic approach to vocal wellness and Parkinson's, developed by KT Warren

    Be Heard! Voice for Parkinson’s has come to Walnut Creek!   
         
“A lot of people with Parkinson’s become very isolated,” Warren explains. “They’re not making facial expressions regularly anymore, and their voices might be soft, raspy, or unclear. They start getting left out of conversations. It gets harder and harder to speak up, and they might stop advocating for themselves, or even start feeling disconnected from their sense of humor, creativity and personality.”

So how does someone with Parkinson’s practice being heard? “We play games,” Warren says. “It’s gotta be fun! Too much of life is hard. I try to weave in elements of meditation, body awareness, and learning how to care for your instrument – that is, your body, mind, heart and vocal cords, all of which make up your voice in the world. But ultimately, we’re working to get the call-and-response reflex firing, so we play a lot of cue games and make each other laugh.”
               
KT Warren, a yoga teacher as well as voice coach, makes sure to warm up the facial, throat and mouth muscles – and the core, which is responsible for projecting sound. She gives mini-anatomy lessons in the midst of an exercise, asking students to feel their core muscles working as they blow out a birthday candle, or bark like a dog.
               
“Getting playful with your voice is not just a gimmick,” Warren says. “Trying out different sounds will allow your vocal cords to exercise at different levels, and in different resonant chambers in your body. You can reduce vocal fatigue, just by getting playful!”
                
The Survey Says...Part 3
The Survey Says……. that non-motor disorders were belatedly recognized as part of the PD problem and may impact 60% of people with PD.

Issues around drooling, swallowing and choking afflict 50% of our responders. Although it may feel to the sufferer that there is much more saliva generated, the problem is due to less swallowing. I am finding relief using Botox injections which I have every three months. I am told that chewing gum helps.

A common problem is that the PD sufferer often internalizes their feelings and withdraws into themselves, thereby isolating themselves from society. This is an issue for over 50% of our responders. It is frustrating that just when you need to be strong to combat PD progression your tools slip away.

A special case comes with hallucinations. 40% of our colleagues have experienced problems with hallucinations. Those who have recovered still shudder at the memory. What makes it worse is the lack of understanding of the people around you. One sufferer said that his adult children told him “Dad, there are no spiders on the wall”. To which he replied “I know.”

Should you become aware of hallucinations, tell your neurologist and go over your medications with him/her, because some drugs can cause hallucinations.

A very common problem for those with PD is depression. Complicating the problem is the fact that most laymen are not clear about the definition of such words as depression, anxiety, apathy, ruminating etc. We need a glossary of definitions (which we hope to provide at a later date.) In our study, 66% of us felt that we experienced depression. 67% of us are taking medication to help us live with the problem, which is a good match. It is common for depression to appear months or years before the motor signs of PD appear.

Additional information about depression from external studies:
·        There was a 64% increase in antidepressant use 1999-2014 in the US.
·        Women are twice as likely to use antidepressants as men.
·        Antidepressant use increases with age.

Our responders reported that 32% of them have issues with apathy , which is a little lower than the literature suggests (40-50%). One expert describes apathy as the feeling of not feeling. Apathy is difficult to distinguish from depression and it doesn’t respond to antidepressant treatment.
Derek Ransley, Facilitator, Men with Parkinson’s, PNMD
The Search for a Cure Begins with your DNA
Learn about 23andMe's commitment to Parkinson's research and how you can participate. Inside all of us is the power to advance Parkinson's research through our genetics.
We are excited to join The Michael J. Fox Foundation for Parkinson's Research (MJFF) as a partner on Fox Insight , an online study designed to collect data from Parkinson's patients to inform research and drug development. MJFF is the largest non-profit funder of Parkinson's research and shares our goal of revolutionizing Parkinson's research through genetics.
When you join Fox Insight, you may be eligible to participate in the Fox Insight Genetic Sub-study powered by 23andMe. You could make a difference.

The power to effect change increases with the number of people participating in research and with greater amounts of data for researchers to mine and analyze.

At 23andMe, we believe genetic data will play a critical role in Parkinson's research.

Our commitment to Parkinson's research is in our DNA.
Since 2006, 23andMe has been the world's leading personal genetics company. In 2009, we launched the world's largest genetic study of Parkinson's disease (PD), now more than 11,000 participants strong.
In the beginning, we wanted more answers. We wanted to contribute to research and better understand the impact genetics has on this disease.

So, we launched a new kind of research. One that uses the web to bring people together to share their personal health and genetic data with researchers — regardless of how close they live to a clinic or research facility.
Today our commitment to accelerating and advancing PD research is stronger than ever. We believe understanding more about how our genetics influences this disease should improve diagnosis and treatment and may eventually lead to a cure. That is our goal.

“What 23andMe did in a matter of years would have taken several decades and tens of millions of dollars if done conventionally.”
Haydeh Payami, New York State Department of Health 

Nutrition: Soba Noodle Soup
A light broth soup packed with a rainbow of vegetables and hearty buckwheat soba noodles. Toss in edamame or your favorite vegetables and spices to make this recipe your own. This recipe comes from Hailey, our Chinese Social Media Manager.

Recipe:  Soba Noodle Soup

  Ingredients
  •  8 oz 100% soba noodles
  •   4-5 cups salt-free vegetable broth or water
  •   1/2 cup chopped onion
  •   1/4 cup white miso paste
  •   2 cups diced tomatoes
  •   2 1/2 cups sliced shiitake mushroom
  •   1 cup shredded carrots
  •  4 cups chopped bok choy or napa cabbage

Instructions

  • Prepare the soba noodles according to the directions on the package, then set aside.
  • Add 4-5 cups of water or salt-free vegetable broth to a pot and bring to a boil.
  • Add the onion, miso, tomatoes, mushrooms, carrots, and bok choy to the water and cook until vegetables are tender.
  • Pour the soup over the noodles and top with fresh cilantro just before serving.

FACLM, September 23rd, 2019 Volume 47
Library and Information Resources
To Members and Friends:

Flu season has arrived. The best way to prevent getting seasonal influenza and its potentially severe complications is to receive seasonal influenza vaccine yearly. Last year's season, from 30 September 2018 to 19 May 2019, lasted 21 weeks, the longest in ten years. The testing and monitoring for influenza virus goes on all year long and is done by the U.S. World Health Organization (WHO) and the National Respiratory and Enteric Virus Surveillance System Labs. WHO recommended the Northern Hemisphere 2019-20 vaccine composition and the Food and Drug Administration's Vaccine and Related Products Advisory Committee subsequently made the final recommendation for the U.S. This year's vaccine is trivalent and contains A(H1N1)pnm09-like virus, A(H3N2)-like virus and a B-like virus.

The CDC (Centers for Disease Control and Protection) monitors hospitalizations associated with laboratory-confirmed influenza infections. Last year the age group of 65 and older had the highest cumulative hospitalization rate, not unusual. The most common underlying medical conditions in adults were cardiovascular disease, metabolic disorders, obesity and chronic lung disease. Pneumonia, especially pneumococcal pneumonia, is a serious complication of influenza. People more than 65 years old are at greater risk for complications so vaccination is important in this age group. As immunity decreases over the year after receiving the shot, annual vaccination is necessary. Also, older people have weaker immune systems and may have a lower antibody response to vaccination. There is a high dose vaccine for those 65 years old or more, which contains four times as much antigen as the standard adult dose and is associated with a greater immune response in some. The supply is limited. Be up to date on your pneumococcal vaccine too.
Check with your health care provider and call your doctor immediately if you develop flu symptoms: fever (not always present), cough, body aches, sore throat, runny or stuffy nose, fatigue, headache, chills vomiting and diarrhea. Antiviral drugs are available if treatment is begun within two days of developing symptoms. Wash your hands frequently as a preventive measure.

The library table will have some handouts about influenza. There will also be books for you to take out about PD as well as handouts concerning a variety of issues PD patients might have to deal with. Pamphlets are available about local resources. The library opens at 10:15 a.m. and stays open during and after the general meeting.


Janice Ransley, M.D. Library Chair
Donations
Gregg and Tina Riehl
Arthur Lawson (automobile)
Gabriel Bennett (automobile)

Patricia Jeha and family - A Wedding Gift to John and Lyte Jeha

Joni Masa and Nitaya Yamamoto in Memory of Joni Yamamoto

Mary Drennan in Memory of James E. Drennan

Diane Senger in Memory of Sheila A Backman
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
Be Heard!
Wednesday, 1:30-3 PM, KT Warren, 206-380-4886
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:
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 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.-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. Please bring cut-up fruit or your favorite snack to share.

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.