The Shaky Times
-- Online Edition --
October 2018
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October Meeting Speaker
Allan and Margy Hansell: A Remembrance
The Elephant in the Room
Am I Weird or Is It Just Parkinson's?
The Day Having Parkinson's Was Cool
Parkinson's, A Balancing Act
Information and Resources Library
Meetings, Announcements, and How to Contact Us
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Saturday, October 20, 2018
Presentation:
Cognitive Rehabilitation
Speaker:
Dr. Alana Stark
Dr. Stark is a Clinical Neuropsychologist at Kaiser, working with a wide range of neurologic, psychiatric and other medical issues. She performs patient evaluations and facilitates the CogSMART Group, a 6-week class that focuses on developing and implementing cognitive compensatory strategies. Dr. Stark has a Doctorate in Clinical Psychology from the Wright Institute of UC Berkeley and completed a Post-doctoral Fellowship in Clinical Neuropsychology at the Northern California VA Healthcare System.
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Allan and Margy Hansell: A Remembrance
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By Howard Zalkin
Allan Hansell died on August 22, 2018. He was 75. I first met Allan and Margy Hansell in 2009. Margy and I were residents in a board-and-care facility in Pleasant Hill, California. Margy had Parkinson’s disease, and I was recuperating from viral encephalitis.
Margy and Allan had been living with PD for over thirty years—Margy as a patient, Allan as her spouse and caregiver. Nevertheless, they both led joyous, active lives. Allan was a biology professor at St. Mary’s College in Moraga. After learning of her diagnosis, Margy earned a law degree, practiced law, led the local chapter of the National Parkinson Foundation, and lobbied Congress for increased funding for PD research. She and Allan were early leaders of Parkinson Network of Mt. Diablo (PNMD), with Margy serving as president, and Allan as host and moderator of monthly meetings. Over the years, they raised two children, and doted on two grandchildren. In addition, they traveled to wildlife refuges to indulge their shared passion for bird-watching.
In 2012, I was diagnosed with PD. Allan and Margy served as guides and mentors as I came to see, through their example, that it’s possible to live life fully, with joy and passion, while contending with Parkinson’s disease. Not long after my diagnosis, Allan and Margy moved back east to be closer to family. We kept in touch on the phone and by email. In the meantime, I discovered and joined PNMD.
In 2013, Margy died. The members of PNMD joined Allan and his family in celebrating her life and her contributions to our community.
My years as a member of PNMD have been, and remain, a great blessing in my life. I am grateful to Allan and Margy for their role in building this community.
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By Carol Fisher
Having a neurological disease like Parkinson’s can feel overwhelming and pervasive. The symptoms are ever-present and most times, on most days, your body reminds you of the fact that you have PD. It can be quite difficult not to be absorbed by it pretty constantly.
While you are busy trying to figure out how to manage your body and your life, the people around you – your partner – your children – your friends can feel equally overwhelmed, confused and burdened by the PD “monster”.
Your loved ones assume you are doing the best you can, so they often silently and willingly try to pick up the pieces…..taking care of more and more of the household chores, personal hygiene responsibilities, managing finances and the other necessities of daily living. Almost like PD sneaks up on you in various ways, the burdens and responsibilities also continue to sneak up on your partner. Whether they admit it or not, they feel more and more exhausted, overwhelmed, scared, isolated and sometimes angry as well.
WHAT TO DO???!!!!
- Be mindful and connected to yourself, your medication cycle and the ways that you take care of yourself.
- Communicate clearly with your loved ones about your needs and feelings so they do not have to guess what is going on with you.
- When your body and mind need rest, honor that.
- As PD progresses and things get more challenging, identify the things that you are able to do to keep the balance of tasks as even as possible. State clearly what you are willing, able and wanting to do.
- Communicate regularly and directly with the people in your life about what they are feeling and thinking about how things are changing and how you can manage it together. Don’t let PD be the elephant in the room!
- Find ways to give your partner a break. Send HER to the spa for an afternoon. Give HIM some baseball tickets.
- Perhaps a cleaning service, yard service, driving service, grocery delivery or meal service may help to lift the burden from your partner.
- Find ways to LAUGH together – a movie comedy, looking at old photographs, playing a game…whatever makes you feel happy.
- Try to keep your social life going on some level and take the initiative sometimes to make those things happen, rather than leaving it all to your partner.
- Don’t delay getting a caregiver – even if it is only for a couple of hours a week. If your partner or family is getting increasingly burdened and exhausted, it may be time.
- Try to make sure that your partner is not having to give up his/her social life and interests just because you have lost the ability or interest to continue yours.
Carol Fisher is a Certified Yoga Instructor and a Certified PWR (Parkinson’s Wellness Recovery) Instructor who has been working with the Parkinson’s community in Denver, Boulder, Berkeley and Walnut Creek for 12 years.
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Am I Weird or Is It Just Parkinson's?
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I’ve been aware of changes in me since I was diagnosed with PD almost four years ago. Do you have such experiences to share?
1.
Why is it that when I brush my teeth, I feel that I have to urinate?
2.
How is it that when I clean my teeth, toothpaste can be found on the towels, sheets and pajamas?
3.
Why is it that I clearly remember, at the peak of my athletic prowess, that I could throw a football the length of the field yet I have no photos to document this?
4.
Why does the mirror tell me that my Adonis days are over, when there’s a question about whether they ever existed?
5.
I observed that the parting in my hair was getting wider. A “friend” agreed by saying that “If it gets any wider, your ears will drop off.”
6.
You now have the perfect opportunity to catch up with your reading. Why is it that you are asleep by page 3?
7.
I have observed that the members of the (Women with Parkinson’s (WWP) act as informal care-givers for other women members. Guys, are we missing something?
8.
When I retired, 20 years ago the days of the week were MTWTFSS. They now seem to be SSSSSSMSSSSSSSTSSSSSSSSWSSSSSSSSTSSSSSSSFSSSSSSSSS.
9.
There are advantages to having PD. There must be. Surely there are. You must know what they are. I can’t believe…….
10.
Have you heard of
Wary Words
? These are words that are used with caution or may best be stricken from your vocabulary. Examples are
blame, fault, despair, should, you (always)
and
spontaneous.
Alternatively,
Wonder Words
are those that are beneficial to others such as
warmth, awareness
,
friendship, gratitude, solace, rest, peace
and
sorry.
11.
Sinemet gave me a boost when I first took it. However, if you take too much, you run into dyskinesia. If you take Botox injections to reduce drooling, your mouth becomes dry and it is hard to swallow. If you do all the exercising that you are supposed to, you feel exhausted. Don’t you get anything for free?
12.Are you aware of the magic walking stick? When you use your stick, people volunteer their seat on BART! Welcome you to early boarding when you fly. Call you “sir”. Smile at you. Hurry to serve you. It’s almost worth getting old.
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The Day Having Parkinson's Was Cool
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By Phil Horning
The harsh ringing of the alarm clock at 3:00 AM signaled the beginning of what I knew would be a long day. I struggled out of bed, took my meds and gathered the things I’d need for the next 24+ hours. My Parkinson’s symptoms always seem a little worse when I’m sleep deprived and this day was no exception.
We hopped in the car and headed over to Squaw Valley to drop off my son, Brett, for the 5:00 AM start of the Western States 100-mile Endurance Run. (his 1
st
100 miler). At exactly 5:00 AM, the traditional shotgun blast started runners on a journey over rugged trails from Squaw Valley, across the Sierra’s to the finish in Auburn.
The plan for the rest of the day was to drive to the one easily accessible aid station on the course at mile 60 and then make our way to the finish at Placer High School in Auburn. Late in the afternoon, Brett arrived at the mile 60-mile aid station. We shouted words of encouragement and then hopped back in the car and headed for Auburn.
We set up our folding chairs, near the finish line just as the 1
st
place runner came in. By midnight, more runners were coming in and spectators were gathering near the finish area. Having received an update from Brett’s support crew, we knew we had at least another couple hour to wait.
Dressed in my comfy sweat suit I walked (in my pronounced Parkinson’s gait) around the finish area taking in the sights. To my surprise someone came up to me and complimented me on a great race. Thinking they had me confused with someone else, I explained that I was a spectator. By this time, I had been up for the better part of 24 hours and my Parkinson’s symptoms were worse than usual. My gait was uneven and I lurched and swayed as I walked. A little while later another person offered congratulations on a great race. Again, I explained that I was just a spectator.
At that point a smile crossed my face as I realized why people thought I was a race finisher – with my Parkinson’s symptoms I looked a lot like the runners who had just finished an epic 100-mile race. Many were limping; some needed help getting upstairs and others needed help just walking. This was cool! I fit right in. My mind wandered as I basked in the thought that at least for a while, I was free of my PWP title. It was as if the clock had magically been turned back to the days when I ran marathons.
22 hours and 45 minutes after the start in Squaw Valley my son made it to the finish. It had been a long day for all of us. As we slowly walked back to the car, my thoughts drifted between that of a proud parent and the humorous reality that this was the first time in years that my son and I walked with about the same gait.
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Parkinson's, A Balancing Act
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By Kathryn Ann Crosby
This poem is for folks with shaky bones
And others challenged to stand alone
Never, never, never fall
That’s all.
If tap-dancing is not your speed
Try talking and walking together indeed
Never, never, never fall
That’s all.
With light-headed dizziness
Other PD blood pressure silliness
Never, never, never fall
That’s all.
One step at a time, slow down
Or chose to be a floppy clown
Never, never, never fall
That’s all.
Jack be nimble, Jack be quick
Humpty Dumpty did another trick
Never, never, never climb that wall
That’s all.
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Information and Resources Library
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This month PNMD's guest speaker will be discussing issues related to cognition. The word
cognition
comes from a Latin verb
cognosco
(know), derived from the Greek
gignosko
(I know or perceive). As a noun the word cognition refers to "mental action or process of acquiring knowledge and understanding through thought, experience, and the senses". It can also refer to the process of using existing knowledge and generating new knowledge. Cognition includes a complex group of processes including attention, memory, reasoning, problem solving, language and comprehension. It is something we use every day of our lives. It is also something that can be compromised by Parkinson's as the disease impairs the function of nerve cells and the support cells in the brain and sense organs. There are some things we can do to strengthen cognition and keep our brains as healthy as possible. Handouts will be available in the library regarding this subject.
Cognitive testing and associated programs such as Kaiser's CogSmart are available through medical consultations requested by your physician after discussion with you. You have to initiate the request in most cases.
Please visit the library after the group meetings. It opens at 10:15 and remains open after the guest speaker. Look over the brochures, handouts, DVDs and books that are available. All books must be signed out and returned the following month. If you have any suggestions or requests, please speak to one of the people at the table, usually Linda Madden or myself.
Janice Ransley, M.D., Library Chair
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PD Exercise Activity Classes
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PD EXERCISE ACTIVITY CLASSES
Boot Camp
Monday, 9:30-10:45AM, Petra Fibrichova, 510-520-4523
Yoga
Thursday, 9:30-10:45AM, Jodi Barry, 415-328-4123
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.
Alexander Technique Group Class - 10 Weeks
Wednesday, 10:00AM-11:00AM, Lena Hart, 917-806-7929
Come learn the Alexander Technique and gain life-long skills to help you manage your symptoms of PD. The Alexander Technique is scientifically proven to help those with PD regain their balance, do every day activities with more ease, and manage symptoms of depression.
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Announcements, Meetings and How to Reach Us
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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.
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Help Wanted: Volunteer Audio-Visual Technician
Volunteer for Parkinson's disease support group that meets at Grace Presbyterian Church near Rossmoor. Familiar with PowerPoint, laptop computers (PC or Mac). Able to set up and operate slide projector, amplifier, microphones. Third Saturday of each month from 10:00 a.m. to 12 noon. Please call 925-939-4210.
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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
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:
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
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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