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

Finding Your Balance

How to Get Through the Cold of Winter

People with Parkinson's Could Benefit
from even the "Simplest" Help

Low Blood Pressure? Is It Dangerous?

Donations & Thanks from Co-Presidents

Information and Resources Library

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

Saturday, December 15, 2018

Presentation: Vocal Health
Speaker: Kaitie Warren

Kaitie’s background in theater brought her over 20 years of vocal training and knowledge of vocal health. When her father was diagnosed with Parkinson’s, she discovered just how important this work was to a population in need. Already a certified RYT-200 yoga teacher and community choir director, Kaitie worked with both Carol Fisher and  John Argue , masters in the Parkinson’s therapy community, before developing Be Heard! which launched in March 2017. www.VoiceFor Parkinsons.com for more info.

 FOR THE DECEMBER HOLIDAY CELEBRATION, A HOT LUNCH WILL BE PROVIDED BY THE PARKINSON NETWORK MT DIABLO FOUNDATION. MEMBERS: PLEASE BRING YOUR FAVORITE “DESSERT” OR “CUT UP FRUIT” TO SHARE AT THE LUNCHEON. THANK YOU, HOSPITALITY CHAIR: RYNETTE RAJA 

i Finding Your Balance - no PUN intended!!
By Carol Fisher

What does it mean to find a balanced life with PD? Everything you read and hear says – exercise more - don’t eat this – eat this – take these drugs – don’t take these drugs – socialize – be mindful – meditate – and on and on! Some people say and feel that having PD is a FULL TIME JOB! Keeping up with all of the things you are SUPPOSED to do and finding that it takes longer and gets harder to do most everything makes one feel LESS BALANCED if anything.

So how can your life feel balanced when the whole way you understood life has changed?
We are all different. Some people like to exercise, take trips, enjoy cultural and community events and be busy much of the time. Others enjoy less active pursuits like reading, being with friends, playing bridge, making art, brain games, movies and writing, to name a few.

Your own balance is found by:

  • Listening deeply to your body and how much walking, yoga, boxing, bootcamp, swimming, weight training, dancing and singing feels good to you.
  • Being active is important but resting your body is just as important. Have enough energy to do the active things and have enough rest to enjoy family and friends and activities that make you feel satisfied and happy.
  • Eating in a way that gives you the capacity to feel more energetic, that allows your body’s elimination system to work well while hopefully giving you the pleasure of eating something you enjoy.
  • Noticing the things that feel easier and the things that are draining to you and making choices about how to spend your time.
  • Understanding that who you are, where you are with PD and how you feel, both in your body and in your heart and soul hold the answers to the right balance for YOU. What anyone else says or what anyone else is doing is often interesting information but may or may not be right for YOU.
  • Knowing that it is perfectly okay to take a day off and to sit under a tree and take a nap. In fact, sometimes that is the best of all possible choices.
  • Giving yourself permission to change it up. Maybe you enjoyed a certain type of exercise or activity for a time but maybe you would benefit from trying something different. Boredom creates a feeling of stagnation in us. Don’t hesitate to try something different. Maybe it will work for you and maybe it won’t, but you don’t know if you don’t go!!

Rumi wrote: “You are not your body, you are the eye.
                           “When you see the spirit, you are free of the body.
                           “A human being is an eye – the rest is just flesh and bones.
                           “Whatever your eye sees, you are that.” 

Joseph Campbell wrote: “Your sacred space is where you can find yourself again and again. . . .”
How to Get Through the Cold of Winter
Parkinson's News Today, Nov. 12, 2018
By Sherri Woodbridge

Winter has just about landed upon us, and it’s getting to be that time of year when we hang up garden tools, freeze-proof the outside water spigots, and pull out the heavy sweaters and rain boots. For many of us, it also means trying
to get warm and comfortable with our Parkinson’s disease while freezing as we watch the snow fall outside our windows.

One of the inconveniences of Parkinson’s is that changes in temperature outside can create pain and discomfort.

When winter slowly creeps upon us, our symptoms can slowly intensify. Sometimes it’s hard to link the weather to our discomfort until one day we realize the seasons have definitely merged from one into another. The crisp, cool days of autumn are just about over, and the frosty, frigid days of winter are almost here to stay.

Does the cold make your PD more unbearable? Most people with Parkinson’s would respond with a resounding yes. If you aren’t one of those people, be grateful. If you are, by now you’ve probably noticed more stiffness, especially in the evenings as the warmth of whatever sun remains slowly hides behind the horizon.

The winter months can cause your tremors to worsen. They can contribute to an increase in gait problems as well as problems with balance and stiffness. Pain can become your closest friend.
 
How can you survive another winter? When sleeping, try an electric blanket, which hopefully will eliminate the cold that often permeates the body and causes aches. Throw blankets used for the couch now come in heated varieties that make reading or watching TV more pleasant.

If you’re shopping for a new car, don’t forget to check out the heated seat option. They make trips, short or long, easier to bear.

To alleviate stiffness, arnica gel and magnesium spray have worked well for me to loosen up muscles.

Keep your feet warm and wear a sweater or sweatshirt. Layer up. Once you get a chill in your bones, it’s hard to get warm. When you go outside, put on some tights to give you an added layer of warmth. Warm up on the inside with a cup of tea or hot chocolate. And don’t forget the oldest remedy: Snuggle up with a good book in front of a roaring fireplace. If you don’t have a fireplace, light a candle and pretend.

Merry winter! ***

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.

People with Parkinson's Could Benefit
from even the 'Simplest' Help
Parkinson's News Today, Nov. 7, 2018
By Sherri Woodbridge
Some people’s reactions to a person with a disability can be disheartening. They stare, make thoughtless comments, point fingers, or whisper. Some people don’t know how to handle a person who has an obvious disease, disability, or illness. They may be uncomfortable around one who is disabled, which can make the disabled feel uncomfortable.

A report by  ABC News  last August shared the story of a Walmart cashier in Michigan who went out of her way to make a customer feel a little more comfortable, a little more “normal,” with a simple, selfless act: She painted her customer’s fingernails.

That may not seem like a big deal to some, but for those with a disability like cerebral palsy or Parkinson’s disease, it’s a very big deal.

Angela Peters, the customer, shared her story with Ebony Harris, the Walmart cashier. The story went something like this:

Somehow, Ebony heard of Angela being refused service at a nail salon due to her cerebral palsy. Cerebral palsy, like Parkinson’s disease, can cause tremors and involuntary movement of the limbs. Ebony took action, using her break to paint Angela’s nails. The two women set off to choose the perfect color, a sparkly shade of blue, and then seated themselves at the in-store Subway sandwich shop.

Ebony was just doing something simple and kind for another human being, something that most of us can do for ourselves, and yet, sometimes we can’t. Our illness takes away our ability to do something that seems so small and insignificant to others. A friend of mine told me the other day that after having her toenails cut, her feet felt so much better and her toes didn’t hurt anymore. She isn’t able to cut her own nails because she can’t bend over far enough to do it. 

I wonder, with the holidays approaching at lightning speed, if perhaps some nail pampering is the perfect gift to give a loved one. Actually, why wait? We can be like Ebony and give a gift of kindness any time, starting today. Starting now.
Low Blood Pressure? Is It Dangerous?
Provided by Mary Behrendt

Do you feel dizzy when standing or when getting up from lying down or sitting? Or, a bit scarier, do you start to crumble and fall when just standing? If so, it is important to understand Neurogenic Orthostatic Hypotension, a drop-in blood pressure (BP) when standing. “Blood pressure is a measure of how hard the blood pushes against the walls of your arteries as it moves through your body.” (1)   If your blood pressure decreases when you stand up or decreases when you are standing, the lower pressure may cause reduced blood flow to your brain and, as a result, you may feel dizzy and find it difficult to maintain your balance.

So, what can you do about having low blood pressure? 
  • Drink fluids. We should be drinking at least 6 large glasses of fluids per day.
  • Treat yourself to salty foods: chips, soy sauce, tomato sauce, etc.
  • Keep a journal. Take your BP in three different positions: lying down, sitting and standing up. Include information on any dizzy spells or falls you have had. What was your activity level at the time of those events?
  • If your blood pressure drops below normal (120/80), talk to your neurologist. There are tests that the doctor can recommend to officially document Orthostatic Hypotension.
  • There are medications that can help you control your low blood pressure. Again, talk to your doctor.

You can also do some additional research.
  • Visit the official website for nOH, Neurogenic Orthostatic Hypotension: www.nOHMatters.com.
  • Go to YouTube and search for  Neurogenic Orthostatic Hypotension (nOH).
  • Watch “Behind the Mystery,” also on YouTube, which includes both an introduction to the condition as well as a wonderful personal story. https://www.youtube.com/watch?v=FDt9kFmPSQU

My husband Bill and I never knew much about this condition until we went to a Multiple Systems Atrophy (MSA) conference, which focused on autonomic systems, including blood pressure. NOH is one of the Parkinson’s symptoms and also common in MSA, which is a Parkinson’s variant condition. This is just another example of how important it is to keep learning.

(1)    Kaiser Permanente Printout: Low Blood Pressure (Hypotension) from www.healthwise.net


Thanks from the Co-Presidents
Dear Members and Friends:

As we move into the holidays, we would like to take a moment to thank each of you for participation with Parkinson’s Network of Mt. Diablo. PNMD has had a successful year bringing interesting speakers, a great library, informative Ronniegrams, web content, our monthly newsletter Shaky Times and a format for sharing in our individual support groups. This could not have been done without all our volunteers and you, our members––thank you. Let us end the year with peace in our hearts and move into the New Year with the hope that this year will bring further progress and discoveries that will enable all of us to enjoy our futures.
 
                                                     Abraham Raja & Lance Gershen
                                           Co-Presidents, Parkinson’s Network of Mt. Diablo

Donations

  • Janelle S. Millar in memory of Alice Morris
  • Janice M. Cattolica in memory of Jeffrey Straus
  • Charles Williams (vehicle)
Information and Resources Library
To Members and Friends:

The annual holiday season is upon us. With Halloween and Thanksgiving already in the past, we are involved in celebrating December's activities. A recent Webinar titled "Caregiving Through the Holidays" was hosted by the Family Caregiver Alliance. The speaker was Patty Callahan, a social worker, who pointed out several things to consider in your holiday planning:

  • If you have had to change your household routine because of changes in health of someone you are caring for, change your holiday activities as well.
  • She gave tips about scaling down your shopping, decorating, and baking.
  • The importance of talking with family and friends about the changes in your life was emphasized. It is appropriate to ask for help.
  • As a caregiver, be sure to slow down and care for yourself. Watch for feelings of stress. Are you hungry, angry, lonely, tired or scared/anxious? Rest, talk to someone, go out with friends, sleep well, and make a plan.
  • Handouts of notes from Ms. Callahan's talk will be available at the December meeting or you can look at the caregiving corner at www.parkinsons.stanford.edu.

At the December meeting used books will be for sale at $1.00 a piece at the library table - a great bargain. There will also be articles of general interest regarding Parkinson's. Suggestions for new books are always welcome. Please let one of us at the library know what your interests are.

HAPPY HOLIDAYS TO ALL

Janice Ransley, M.D., Library Chair

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Boot Camp
Monday, 9:30-10:45 AM, Petra Fibrichova, 510-520-4523
Yoga
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
Rock Steady Boxing
8 classes/week-call for times, Jimmy Greninger, 925-785-1272
Tremble Clefs
Thursday, 1:30-3:30 PM, Michael Grupp, 925-451-3389
Boot Camp
Mon., Wed.,Fri., 10:00-11:15 AM, Anu Ramaswamy, 925-922-0589

Please contact activity instructor for further details and fees.
Announcements, Meetings and How to Reach Us
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 Jan Alioto, jalioto@comcast.net (925) 890-8937.

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: 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: Michael Grupp (925) 451-3389
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.