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

Living and Dying with Grace and Dignity

The Hierarchy of Pain and Parkinson’s 

Lightning Struck Her Home

Donation Acknowledgments

Library Corner

Exercise Class Schedules

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

Saturday, June 16, 2018

Presentation: Be Heard! The Mechanics of Speech for Parkinson’s
Speaker: Kaitie Ty Warren

Ms. Warren teaches a weekly class in Berkeley, using relaxation, exercise, games, muscle training and music to develop the tools to maintain the ability to speak clearly.  She has decades of experience in theater, singing, and speech and has studied with some of the best vocal teachers in the Bay Area, Seattle and Los Angeles. Her experience ranges from opera to the revolutionary Fitzmaurice Technique for voice training.

Li Living and Dying with Grace and Dignity
By Carol Fisher

Here’s the Predicament! Things change – our car gets old; our body gets old. Perhaps we even get Parkinson’s! The external changes are obvious. The harder and subtler task is to recognize that thoughts and feelings are also part of what changes.

As you age, some of those thoughts, feelings and realities will be traumatic because they counter the core model of who you think you are. As you face the changes associated with age, disease and ultimately death, you can get trapped in a whole list of grim psychological possibilities: despair, depression, feelings of worthlessness, frustration, doubt, vulnerability, forgetfulness, irritability, loss of self-confidence, fear of the future, obsession with possessions, lack of meaning, loss of friends, fear of not having enough money, no one to touch, loss of power or influence, and lack of focus and goals, which name just a few. Reward systems you worked so hard for don’t reward you anymore. You may try to maintain psychological security by holding on to things as they are, but . . . .

Martin Buber says, “To be old can be glorious if one has not unlearned what it means to begin.” Using the new uncertainty and negative feelings about aging and illness can be a wakeup call. Have compassion for yourself and allow yourself to be open to the changes. The rest will follow and will lead the way for being able to live and die peacefully and gracefully.

The distortion comes from defining ourselves in terms of doing instead of being. Trungpa Rimpoche notes, “Our lives awaken through ordinary magic.” It’s in the everyday things that the miraculous happens. If we practice being in this very moment, we develop the sensitivity to perceive and appreciate the daily miracles in our lives--the sunlight coming through the trees, the stars in the sky, and the joy in a child’s face.

Now isn’t preparation for later. Here and now are IT! And this practice of being here and now is the ultimate preparation for that ultimate letting go moment when we hope to be able to breathe our last breath gracefully and beautifully.

In Walden, Henry David Thoreau wrote:
“Sometimes . . . I sat in my sunny doorway from sunrise till noon, rapt in a reverie amidst the pines and hickories and sumacs, in the undisturbed solitude and stillness, while the birds sang around or flitted noiselessly through the house, until by the sun falling in at my west window, or the noise of some traveler’s wagon on the distant highway, I was reminded of the lapse of time. I grew in those seasons like corn in the night, and they were far better than any work of the hands would have been. They were not time subtracted from my life, but so much over and above my usual allowance. I realized what the Orientals mean by contemplation and the forsaking of works.”

Ram Dass wrote:
“There are some unappreciated advantages to aging. The very frailty of age guards its secrets. To many people you become irrelevant, which gives you more time to do inner work. Francis, a resident in a nursing home, wrote to me, ‘Lack of physical strength keeps me inactive and often silent. They call me senile. Senility is a convenient peg on which to hang non-conformity. A new set of faculties seems to be coming into operation. I seem to be waking to a larger world of wonderment – to catch a little glimpse of the immensity and diversity of creation. More than at any other time of my life, I seem to be aware of the beauties of our spinning planet and the sky above. Old age is sharpening my awareness.’ And the journey continues. . . .”
The Hierarchy of Pain and Parkinson's
By Derek L Ransley, PhD

My wife and I met in March of 1983 and married in September that same year. Four months later my wife called 911 because I was experiencing chest pain at rest. This resulted in my having triple by-pass surgery in February 1984. What a start!

I did not find the prospect of the surgery daunting. It was a case of ignorance is bliss.

On the evening before the surgery, a young nurse told me that the first words I would hear as I woke would be her voice saying: “Wake up, Mr. Ransley. Take a deep breath. I want you to take a really deep breath.”

Indeed, as I came out of the anesthesia, I heard her voice saying, “Wake up . . . .” I smiled to myself as I mustered a deep breath.  I felt excruciating pain and realized that I couldn’t smile because I had a vacuum cleaner hose stuck down my throat and I sure as hell didn’t want to take a deep breath. I immediately decided that if I could handle this, the rest of recovery would be a breeze. I almost pleaded to have the tube removed. Finally, it was removed and I breathed a sigh of relief. Except . . . .

I then became aware of stomach cramps that seemed unbearable even though they were less apparent than when I had the breathing tube in place. I was told that the cramps were caused by drainage tubes and these would be removed soon. They were but my chest hurt, especially when the two sides of my sternum grated together when I moved. I was puzzled because I hadn’t been aware of the chest problem when I had the drainage tubes in place.
I then became aware of a pain in my shoulder, which might have happened when I was strapped to the operating table.

This is what I called the “Hierarchy of Pain.” At the time, I thought that I had made a profound discovery. Since then, I have been aware of many stories that fit this pattern.

I would state my “discovery” as follows:

Pain is often experienced at a number of different levels with the most painful overriding lesser pains. The message is that if you can deal with the worst, it means you can handle any subsequent pain challenges.

This by-pass surgery lasted 18 years when I had a second triple by-pass; then I had angioplasty and stents to keep me going.

My introduction to Parkinson’s, although I didn’t know it at the time, came when we were out walking. I became aware of movement out of the corner of my left eye. I realized that my left arm was swinging in an exaggerated manner and the movement I had noticed was the shadow of my left arm on the ground. I tried letting my left arm dangle to stop the movement and it worked. However, when we resumed our conversation, the motion began again. I wasn’t particularly bothered but thought it rather weird. I certainly didn’t make the connection between this event and the depression that hit me a few months later. This was followed by tremor in my hands and then a loss in volume of my voice. At the time, I was chair of the art docent committee at the Oakland Museum of California and I felt the need to hide my symptoms. I was aware that I had lost most of my sense of smell but that seemed to be small potatoes.

I was diagnosed with Parkinson’s disease in 2014, although hindsight tells me that I had symptoms four years before that. As I learned about PD, I realized that the disease had many diverse symptoms. Most symptom lists vary from 70 to 140 in number. No one person has a full slate of symptoms and the impact of any given symptom varies greatly in severity from one person to another.
I began to realize that there was a parallel between a person experiencing physical pain and another experiencing a variety of different PD symptoms. Among the most common PD symptoms are: constipation, loss of sense of smell, soft speech, tremors, emotional distress, lack of expression, and so on. Even with this truncated list, the complexity in dealing with PD is readily apparent. However, one cannot deal with all the issues and symptoms at the same time. That would be overwhelming. I have felt it useful to prioritize those issues that I can do something about.

The changes that were taking place in me were so diverse that I couldn’t believe that there was a connection. By far, the most disturbing aspect was depression. It impacted everything. I felt that I had been thrown into the arena with the lions and tigers and no weapons. Some physical symptoms became more apparent. I developed a tremor in my left hand and I started drooling  I couldn’t control a pen as I used to. I used to be able to take coherent notes and produce a report. Now, I felt that my mind was muddy and my writing was unreadable.

Eventually, I was diagnosed with PD and given Sinemet and the sun began to shine again. I got a very upbeat response, which took care of most physical and emotional issues. I read that Sinemet’s benefits last 3-6 years and I think that I am experiencing some loss in benefits. I still have to deal with emotional issues but that’s another story.

There is a limit to what can be done to help those of us with PD. The main approach aims to modify the symptoms, which often leads to side effects. Medications and more invasive procedures such as DBS may be considered. I think that much more can be done to improve our frames of mind and help us take a more positive view to life. 

Our disease doesn’t define us.
Lightening Struck Her Home,
Then Her Brain Implant Stopped Working
By Veronique Greenwood
New York Times, May 3, 2018
One stormy afternoon in Ljubljana, the capital of Slovenia, thunder rolled, a bolt of lightning streaked across the sky, and the television and air conditioner went dark in the apartment of a woman with electrodes implanted in her brain.
Lightning had struck the building.

But the appliances were not the only things affected. After about an hour, the woman, who had had the electrodes put in five years before to help with debilitating muscle spasms in her neck, noticed her symptoms coming back. When she went to see her doctors the next day, they found that the pacemaker-like stimulator that powered the electrodes had switched itself off in response to the lightning strike.

In a study describing these events published Tuesday in the Journal of Neurosurgery, her doctors suggest that physicians and medical device companies add lightning strikes to the list of things patients with electrodes implanted in their brains should watch out for.

It may sound futuristic, but deep brain stimulation, or D.B.S., has a fairly long history. Surgeons operating on epileptic patients in the 1930s and 1940s found that removing small portions of the brain could quiet seizures. Later, researchers found that stimulating certain brain areas, instead of cutting them out, could quell the involuntary movements characteristic of Parkinson’s and other disorders.

Today some patients with diagnoses like epilepsy, obsessive compulsive disorder and painful muscle spasms who don’t respond to other treatments have surgery to implant electrodes on either side of the brain. The electrodes are attached to wires running down to a stimulator implanted in the chest or torso. The stimulator provides electrical impulses to keep symptoms in check, using a battery that in some models can be topped up with an antenna-equipped power pack that’s charged with a wall plug.

Just like people with pacemakers, those with D.B.S. implants must be careful about getting diagnostic MRIs and spending time around devices that generate electromagnetic fields. These could set up a current in the implants and cause injury or other issues, said Dusan Flisar, a neurologist in Slovenia who is an author of the paper. For instance, one study reported a case where a patient sustained permanent neurological damage when an MRI scan heated up a D.B.S. electrode.

“There are also environmental causes that can affect the proper functioning of this device,” Dr. Flisar said — namely, it appears, lightning strikes.

The woman who came to see Dr. Flisar after the storm was lucky: She had not been charging her implanted battery at the time, nor had she had the charger pack plugged into the wall. If either had been in use, the device and its accessories could have met the same fate as her TV and air conditioner. “The charger would be destroyed like other appliances and the patient injured if she was charging the stimulator during the event,” said Dr. Flisar.

Dr. Flisar and his colleagues recommend in their paper that patients plug their chargers into surge protectors, which will help protect them, and suggest that doctors tell patients to avoid charging during storms.

Fortunately, when he and his colleagues checked the woman’s implant, they found that it had not been damaged. A safety function designed by the manufacturer had taken its cue from the sudden current running through the house and caused the device to switch itself off, pre-empting any interference from the lightning. The programming was intact; the battery still had plenty of charge.

When they fired up the device, it worked perfectly, none the worse for the storm.
Donation Acknowledgements
Thank you for supporting the work of the Parkinson's Network of Mt. Diablo!

  • Ronnie and Larry Wanetick
  • Patricia Getty

In Memory
  • Judy Godar in memory of John Godar
  • Merry Fitzpatrick in memory of Dick Stanley, and in honor of Mary Ann Stanley, Darrelyn Orr, and Andrew Stanley
  • Santo and Jan Alito in memory of Dick Stanley

In Honor
  • Anonymous in honor of Sandy Clark
Library Corner
The June 16th meeting of PNMD will feature a presentation called "Be Heard! The Mechanics of Speech for Parkinson's." The library will have several articles available for you on that subject. Speech is related to swallowing. The muscles used in both actions are impacted by loss of dopamine. Both speech and swallowing may change early in the course of Parkinson's Disease. These changes cause issues in communication and a consequent reduction in social interaction. Therefore, it is important to learn how to reverse and/or slow these changes.

More copies of "Everything You Need to Know about Caregiving for Parkinson's Disease" are in circulation. All books may be borrowed for a month by signing out on the sign-out sheet on the library table. Please return them at the next meeting so others can have a chance to read them, too. There are also brochures, DVDs and other materials for your information. Take a look at the new brochure about Home Care Services. This has information which will help you to live at home as long as possible. 

The library opens at 10:15 a.m. and stays open for a while after the general meeting. Please take time to look at what is available that is of interest to you. If you have any suggestions, please notify the librarian.

Janice Ransley, Librarian

PD Exercise Activity Classes

PD EXERCISE ACTIVITY CLASSES

Boot Camp
Monday, 9:30-10:45AM, Murthy Jarugumilli, 925-864-2890
Yoga
Thursday, 9:30-10:45AM, Carol Fisher, 925-566-4181
Dance Moves Me
Tuesday, 1:00-2:30PM, Debbie Sternback, 510-653-8362
Rock Steady Boxing
8 classes/week-call for times, Jimmy Greninger, 925-785-1272
Tremble Clefs
Thursday, 1:30-3:30PM, Michael Grupp, 925-451-3389

Please contact activity instructor for further details and fees.
2018 Dues - Still $50

PNMD annual dues are still $50 per household. About 60% of you have paid for 2018, but many have not.

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.

If you'd rather mail your dues, send your check to PNMD, P.O. Box 3127, Walnut Creek, CA 94598-0127.

If you are unsure whether you've paid for this year already, contact Sara Allen by phone or email - 925-296-0221 or allensa7@gmail.com.

Thank you for supporting PNMD!
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 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. 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: Ken Kuhn (925) 588-9837 or kenkuhn56@yahoo.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: Cindy Gershen ( 925-932-1028) or cindymgershen@gmail.com
Tremble Clefs: Michael Grupp (925) 451-3389
Caregiver Discussion Group: Norman Kibbe (925) 935-9322 or nkibbe@aol.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
DBS: TBD
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.