The Shaky Times
-- Online Edition --
June 2019
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June General Meeting Speakers
June Tri-Valley Meeting Speaker
PNMD Poker for Parkinson's Fundraiser
Stress, Your Nervous System & Your Symptoms
It's Not Just the Parkinson's Disease
Memorial Service for Jackie Bardsley
Jeha Memorial Golf Tournament
Donations
Information and Resources Library
Exercise and Activity Classes
Meetings, Announcements, and How to Contact Us
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June General Meeting Speakers
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Saturday, June 15, 2019 - General Meeting
Presentation: DBS
Speakers:
Caroline Racine Belkoura, PHD
Caroline Racine Belkoura is a neuropsychologist who specializes in the assessment of cognition, or the process of thought, and mood in patients with neurological disorders. She is part of a team treating patients in neuro-oncology, radiation oncology and surgical movement disorders. She assesses patients prior to surgery or treatment and provides ongoing assessment to monitor cognitive function over time. These evaluations help with treatment planning and return-to-work strategies. She also evaluates patients with cognitive problems resulting from neurosurgery or neurological conditions.
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June Tri-Valley Meeting Speaker
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Saturday, June 8, 2019, 10 am- Pleasanton Senior Center
Presentation:
Idea of Rhythm as a Healing Modality
Speaker:
Bruce Silverman, M.A., Ph.D (Hon)
Bruce is a poet, musician and music therapist, and a counselor in private practice. He has been on the faculty of Holy Names University and Naropa University and directs The Orpheus Healing Arts Institute (Berkeley) His book,
So What Happened to God. Religion, Science and Democracy?
explores a variety of human endeavors from religion to music and love. Central to his life’s work is to help to uncover the relationship between rhythm, music and sound to healing. He has presented this work locally, nationally, and abroad at a variety of workshops and cross-cultural events.
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PNMD Poker for Parkinson's Tournament 2019
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Stress, Your Nervous System and Your Symptoms
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By Carol Fisher
When you have a nervous system disorder, like PD, your nervous system is in a high state of alert every minute of every day just managing the effects that PD is having on your being. When you add outside stressors, it is often more than the nervous system can manage. When that happens, PD symptoms often take the brunt of it and you may have more difficulty moving, speaking, eliminating, may have more freezing episodes, feel more tired, more anxious and on it goes.
What are stressors? Here’s a list of possibilities:
Lack of sleep – relationship issues – over-scheduling – frustration – activities and people that you do not enjoy – eating foods that are not friendly to your gut – medication imbalances – too little or too much exercise – injuries – anxiety – depression – self-esteem issues – having unrealistic expectations for yourself.
So – when you add one or several of these types of stressors to an already overloaded nervous system, the weakest link usually takes a hit – and for you, PD is most likely that link.
When you notice one or more symptoms changing dramatically, an alternative to automatically thinking about upping your Sinemet may be looking at what your stressors might be. That is not to say that there are not times when more Sinemet is appropriate, but the more support you can provide to your nervous system, the happier your body will be!
How to deal with the stressors!!! Perhaps:
- Make sure you are getting enough rest. Sleeping can be an issue for people with PD but sometimes having a multi-faceted approach to rest can help. Nap – get comfortable and listen to music or read or sit outside and enjoy the birds and the flowers and trees. - Meditate or just do something that makes your heart sing!!
- Be clear, direct and loving in your communications with loved ones so that no one has to guess about what you are thinking or feeling.
- Be realistic about what you can manage in a given day. Remember that everything takes longer now and that your energy is different. Don’t be afraid to say no if something just feels too overwhelming, uninteresting or unpleasant.
- I read something recently that really made sense to me. “Everything is a pleasure if you have enough time.”
- Changing eating habits can be challenging. We all have our comfort foods and, when all else fails, at least it is nice to be able to eat what we like. However – I have seen people experience amazing changes and improvements in energy, mood, freezing episodes and general mobility just by eating differently. (Check out The Plant Paradox by Dr. Steven Gundry)
- Sometimes medications are prescribed by different doctors and it is essential that you know that they are all compatible and that you have the correct dosages. It is very difficult for doctors to be inside YOUR body and to know exactly what is right, particularly with Sinemet. Work and communicate with your doctor to titrate things for YOU. Don’t be afraid to ask questions.
- At least an hour of exercise every day is ideal. Mix it up, find things that you enjoy, get your heart rate up, walk mindfully and make it a priority every day.
- Depression and anxiety can be managed with medication and/or exercise, community, laughter, meditation and involvement with something that has high interest for you. I know – easier said than done…….
- Accepting who you are now and finding a new and meaningful rhythm in your life is essential. Expecting and hoping that you will be able to do things “like you used to” is an exercise in unrealistic frustration and futility. You are still you and there are almost certainly parts of yourself that you would not have known in this way had you not ended up with PD. A different kind of thinking is more useful now.
Einstein said: “The significant problems we have cannot be solved at the same level of thinking with which we have created them.”
925-566-4181
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It's Not Just the Parkinson's Disease
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parkinsonsnewstoday.com
May 17, 2019 - Dr. C
In a previous column that
I wrote about courage
, I mentioned an eye disease I have for which I receive monthly eye injections. Yes, you read that correctly. I get a needle in my eye. Actually, I get two needles — one injection contains additional anesthetic medicine after the topical application of a numbing agent, while the second injection contains chemotherapy.
The disease is unstable and progressive.
Treatment
is not the same thing as a cure. My providers do their very best to keep things under control. Unfortunately, I recently had a dramatic decompensation that has left me close to legally blind. It’s not the
Parkinson’s disease
alone that makes life difficult, but rather all the other medical “stuff” that gets thrown on top of it. I will be seeing another specialist for assessment and more treatment. But right now, the loss of vision makes it much more difficult to do the quality columns I am so fond of writing for my readers. It’s hard to adjust when such events hit unexpectedly and steal away another part of my self-identity.
Having been through other traumatic events in my life (and counseled others through traumatic injury), I know there is a process. There is a grieving process that has
famously been described by Elizabeth Kubler-Ross
. There is also a recovery process. Not all will be as bad during the healing process as it initially appears. A flood of emotions needs to be taken in, understood, processed, and then let go so that the healing may continue. Time is needed to make life adjustments to the effects of the physical trauma. All of this takes time, patience, and a gentleness with me.
The first emotions I work through are anger: “Why me? It’s not fair!” Then comes the self-pity: “This is too hard. I just can’t handle it. I wish someone would come and make it all better.”
Anger is a normal response. But anger and I just don’t do well together. I can easily become “
The Grouch
.” I am an ugly grouch, mostly because of what I call “spilling out behavior.” It’s been a bad day and the anger needs to go somewhere, so it spills out onto those closest to me. Talk about unfair! I have way too many skills to get into a verbal fight with those I care about.
Self-pity also spills out onto all of those around me. We may not realize it but walking around with that dark cloud overhead casts a dark shadow on those closest to us. Clinging to the hope that someone will save us from our own fate if we just whimper and whine loud enough does nothing but create more suffering. The choice, then, is to accept that something bad happened and that is just the way it is. Time to pull it together and attack the new challenges.
Don’t get me wrong. I am not saying I feel all rosy and chipper about what has happened. I am upset and constantly reminded of the situation. Every time I open my eyes, I am forced to face head-on what has happened. If I let the emotions overwhelm me, I can’t move forward. If I can’t move forward, then my self-identity is headed for extinction. The choice is to accept the fact that something bad has happened, and it is time to figure out how to deal with it.
Part of figuring out how to deal with a dramatic loss of vision will involve all those changes and adaptations that need to be put in place in order to maintain a high quality of life. This new journey has just begun, and I will return to writing columns for this group of readers. Right now, though, I need to take a short break while I complete the medical procedures and then put into place any adaptations necessary for helping me to see the computer screen, to use pen and paper, and to explore other adaptive equipment.
Thanks to all my readers, editors, writers, and staff at Bio News Services for their kind words of support and encouragement. In the esteemed words of the former governor of California, “I’ll be back!”
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Memorial Service for Jackie Bardsley
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Saturday, June 15, 3 pm
Lafayette Christian Church
584 Glenside Drive, Lafayette, CA
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Jackie Bardsley, who was a founder and the leader of the Pleasanton Support Group of PNMD for many years, passed away on April 27. She was instrumental in building the Pleasanton group and her husband, Norman, continues to lead the group and serves on the PNMD Board.
Her memorial service will be in the sanctuary, followed by a reception from about 4 pm until 5:30.
Everyone is welcome!
For questions, please contact Karen or Norman Bardsley at jnbard@pacbell.net or 925-831-9940
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Directions to Lafayette Christian Church:
From Highway 680:
1: Take the Olympic Boulevard exit (exit 45B) in Walnut Creek and go west.
2: After 2 miles, Olympic Blvd ends, turn left into Reliez Station Road
3: Reliez Station Rd becomes Glenside Drive, keep going for 2 miles as it twists right. left and right again
4: The church is on the left, just beyond the bridge over the creek and before you reach St. Mary's Road.
From Route 24:
1: Take the Pleasant Hill Road exit (exit 14) and go south
2: Turn right at the roundabout into Olympic Blvd
3: After 500 yards, Olympic Blvd ends, turn left into Reliez Station Road
4: Reliez Station Rd becomes Glenside Drive, keep going for 2 miles as it twists right. left and right again
5: The church is on the left, just beyond the bridge over the creek and before you reach St. Mary's Road.
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Jeha Memorial Golf Tournament
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In Memory of Dennis Donahoe:
- Virginia Tribby
- Lisa Bartran
- War Games Division Wardroom of the US Naval War College
- Jessica Mao
- Dorri Ryan
- Lisa Nicholson & Tim Gates
In Memory of George Wofford:
- Cathy Schimansky
- Gregory P. Fontenot
- Scott Mattoon
- David A. Cachione
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Library and Information Resources
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To Members and Friends:
Deep brain stimulation (DBS) is an established treatment for people with various movement disorders. It is also approved by the FDA for treatment to reduce seizures in cases of epilepsy not responsive to medication. Any surgery has the risk of complications during and after the procedure. Those possibly occurring after include difficulty concentrating, stroke, confusion, speech and balance problems, undesirable mood alterations (anger and depression), visual problems and others. A neuropsychologist is trained to detect and follow these issues both before and after surgery. At the general meeting in June Caroline Belkoura, PhD, from UCSF, will present information regarding her research and work in this field.
A new book for the library will be
Aging for Beginners
by Ezra Bayda with Elizabeth Hamilton, 2018. The book is not specific to PD but attempts to help the reader use inner exploration to develop a way of living where kindness and gratitude are paramount. This book is a spiritual road map to help us deal with anxiety, depression, physical pain, loneliness, helplessness, and death, as we age and inevitably change.
The Library opens at 10:15 after individual sessions end. There will be handouts relating to issues of cognition, post-surgical changes, general PD concerns and exercise plus a few other topics. Please sign out any books you borrow on the clip board provided. Brochures, pamphlets and other types of information plus community resources are available on the table. The new Davis Phinney manual,
Every Victory Counts for 2019
is available free for download online as a pdf at www.davisphinneyfoundation.org. You can also order your own free paper copy for which there will be a charge of about $5.50 for postage and shipping.
Janice Ransley, M.D. Library Chair
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Has your voice gone soft?
Do you wish people could hear you better?
You
CAN
do something about it –
S I N G!
The
Tremble Clefs
sing every week!
You can too!
No experience necessary
We meet every Thursday from 1:30 to 3:00
At the Lafayette Orinda Presbyterian Church
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PD Exercise Activity Classes
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PD EXERCISE ACTIVITY CLASSES
Boot Camp, Walnut Creek
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
Alexander Technique
Wednesday, 11:00 AM - 12 PM, Lena Hart, 917-806-7929
Tremble Clefs
Thursday, 1:30-3:00 PM, Michael Grupp, 925-451-3389
Boot Camp, Dublin
Mon., Wed.,Fri., 10:00-11:15 AM, Anu Ramaswamy, 925-922-0589
Please contact activity instructor for further details and fees.
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Announcements, Meetings and How to Reach Us
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Questions? Contact Amy Van Voorhis at pnmdtreas@astound.net
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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
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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 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:
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.
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