Joining Forces

By NiVonne Thompson, LCSW

Director of Outreach Services

The Parkinson's Institute 

Most of us have heard the saying, "The whole is greater than the sum of its parts." By working collectively, groups have the power to accomplish far more than each of us as individuals. At the PPSG Board Meeting for the month of August, a discussion ensued about the underlying competition among Parkinson's Disease (PD) organizations. In some uneasy sense, I was relieved to know that my perception as a newcomer to this field was not entirely inaccurate. Several of the Board Members recounted personal experiences where they have felt this tension amongst their peers with PD organizations. Designed to share knowledge, the organizations often present themselves, probably unwittingly, with a sense of "mine" rather than "ours."  

The pull exists at multiple levels of the infrastructure of the illness, subtly infiltrating the way some think about the management and execution of local meetings to the manner in which large organizations are run. There are, of course, some practical reasons for this, one of which is that people deserve credit where credit is due. The pressure to succeed, perform and be noticed in this culture, let alone in the field of PD, can be overwhelming. It is human nature to be territorial about property, whether it is personal, professional, intellectual or physical. Yet at the same time, the unwillingness to share information and visibility or perhaps just plain unawareness of such a climate of secrecy and guarding of information may come at a tremendous price. Rather than working tirelessly toward an independent goal, the organizations and entire field of PD research, treatment and outreach have far more to gain by joining forces and functioning collectively toward a common purpose.  

The NeuroAlliance, a neurological consumer and professional organization in the State of California committed to the advocacy of people with neurological conditions, has realized the importance of such a philosophy by bringing together members from the Association of California Neurologists, National MS Society, ALS, the Epilepsy Foundation, The Huntington's Disease Society of America, and Hydrocephalus Association and local Parkinson's Disease advocates. Another key example on a national level is the multi-site grant among The Parkinson's Institute, UCLA and Emory University entitled Collaborative Centers for Parkinson's Disease Environmental Research (CCPDER). Both efforts emphasize the importance of working together to advance social change and knowledge.  

With this in mind, the Parkinson's Institute and PPSG have rekindled our commitment to working more closely together in a partnership of innovation and renewed enthusiasm for what we can accomplish by combining some of our most precious resources, including the Speaker's Bureau, some general business practices, and ways in which we can better serve the PD community. Although this is a small step toward a much larger goal, we hope that this cooperative climate can influence and contribute to the field on local, state and eventually national levels. We have nothing to lose and so much to gain by joining forces.  

The Parkinson's Institute is an independent, not-for-profit organization conducting patient care and research activities in the neurological specialty of movement disorders. Our mission is to find the cause and cure for these disorders, to provide the best available medical care for patients with movement disorders, to investigate better treatment and diagnostic tools and to develop prevention strategies. 

Proposed PPSG Board Members and Officers, 2003-2004

PPSG has recently nominated the following Board of Directors and Officers for the year 2003-2004.

Board Members: 

Solna Braude

Linda Filice

Bill Holmberg

    Dick Lacey

Viola Mays

Larry Naritomi

Phyllis Ng

John Niggley

Marge Shively

NiVonne Thompson 

Officers:  

Chair:   Elliot Schrier 

Vice-Chair:  Charmaine Eng 

Treasurer:  Dave Russell 

Recording

Secretary:  Doris Gilmore 

The above slate of Board Members and Officers will become effective October 31, pending comments from the membership

Heart of the Valley SERVICES FOR SENIORS, Inc.

By Glenda Cresap

Director

Heart of the Valley 

HOV Mission Statement:  
Heart of the Valley, SERVICES FOR SENIORS, Inc. is a non-profit, publicly supported 501 (c)(3) corporation, committed to facilitating and supporting independent living for seniors in the West Santa Clara Valley. 

What HOV does: 
Heart of the Valley recruits caring volunteers to go into seniors' homes on a single and short-term basis to provide them with a wide variety of in-home services including handyman help, house projects, paperwork assistance, light yardwork, shopping and errand service and computer assistance. We also provide escorted transportation, which means our volunteers pick clients up, take them to their destination , stay with them and bring them home.  


HOV's focus: 
Heart of the Valley's first responsibility is to our very important and necessary team of volunteers. It is our intent to have the services our agency provides fit into the lives of volunteers. HOV volunteers select what areas they wish to serve, what services they want to provide and what their availability will be. Without these very dedicated and caring people we would not be able to provide any services to our elderly clients. 

HOV's next responsibility is to provide the very best services we can to our elderly clients. We do not pry into their finances or personal information. We require no applications to be filled out or registration processes to be followed. People 59 and older who reside inside our area of service simply pick up the telephone and call. They tell us what they need, give us their address and phone number and we have a HOV volunteer call them to set up an appointment for service. If we are unable to provide the services they need we refer them to a resource that can be of further assistance. 

HOV's Geographic Area: 

HOV provides services for seniors residing in the cities of Santa Clara, Campbell, Los Gatos, Saratoga, Monte Sereno, Sunnyvale, and Cupertino. We also provide services to 6 zip code areas in West San Jose. They are 95117, 95125, 95126, 95128, 95129, and 95130. It is not the intent of HOV to expand our services into other areas. We are interested in doing the very best work we can for the many seniors residing in our service areas. HOV would be honored to provide expertise to others who would be interested in providing volunteer services to the other areas in our community. 

Wound Care Clinic at

O'Connor Hospital 

The Wound Care Clinic at O'Connor Hospital, San Jose, can help you heal your wound! Our team of wound care specialists, including doctors, nurses, and other medical professionals, uses the latest, most advanced treatments to help your wound heal. We develop a treatment plan that meets your needs. If you have a wound that has been present for 3 to 4 weeks and does not seem to be healing, call the clinic for an appointment. You do not need a doctor's referral to be seen at the Wound Care Clinic. Most health plans cover treatment at the clinic, but you may need to get authorization if you have a managed care plan or HMO. Please call the clinic for more information and questions at (408) 947-2804 or attend the next meeting on December 10th where the Wound Care specialists will be present to give you information directly. 

MAILING LIST

If you would like to be removed from our mailing list or know someone who would like to be included, please take a minute, call us at 408-734-1593, and let us know.  

www.PatientTravel.org

(formerly the National Patient Air Transport Helpline) 

Provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available through the Angel Flight America Network. 

The National Patient Travel Helpline can be reached at 800-296-1217, and is available 24 hours a day, seven days a week. 

This website will also help you understand the availability of resources that help patients in need of transportation. 

Berkeley 

The group usually meets on the 3rd Monday of the month at the North Berkeley SeniorThe Center from 10:00 AM-12:00 noon.For information, call Mitzi Cahn at 510-527-9075.

NOTE: New Location at Northbrea Community Church at 941 The Alameda, Berkeley. Call Mitzi Cahn at 510-527-9075 for information. 

Berryessa 

The group meets at Berryessa Community Center, 3050 Berryessa Rd., San Jose, on the 1st Wednesday of the month, 12:30-2 PM.

Contact: Bob and Jane Pomeroy at 408-263-8485. 

Daly City

By Leonard Ke

Our Guest Speaker in September was Dr. Alan Jacobs from Titan Pharmaceuticals. Alan talked to us about an exciting new therapy for Parkinson's called Spheramine. Titan, located in South San Francisco, has come up with major innovation in providing relief from the later stage symptoms of Parkinson's.  

At our August meeting, we had DBS patient Larry Naratomi and Nicole Choi from Medtronics give us a report on Larry's current status. From my point of view, Larry looked terrific. He also drove to our meeting from Mountain View. He told us he feels great, but has concerns over falling. He said he's fallen "several times." Nicole gave a great explanation of how the Medtronics system works, and also left us lots of brochures and videotapes on Deep Brain Stimulation. If you didn't get one, call me and I'll reserve one for you. The information was timely, as several of our members are in the process of going through the qualifying process for DBS.  

David Samuelson was a hero of mine. He was small physically but had the heart of a lion. He attended Pat Armstrong's classes for the physically challenged until his symptoms prevented him and his wife Pat from the commute. Dave would always go twice as hard and do twice the repetitions that were called for. Despite his worsening condition, he always had a smile on his face. Dave recently passed away. We would like to express sincere condolences to Pat.  

Fremont 

Bob Coon addressed our group in September. His presentation was excellent, and we learned a lot from his experience. Thank you, Bob, for sharing your trials and tribulations as a caregiver to your wife who had PD. 

Our speaker for the October 27 meeting was Dr. Ray Grimm, of the Senior Peer Counseling Program, Human Services Department, Fremont. He spoke about the programs available to us by and through the City of Fremont. His program was of interest to the caregiver and family, as well as PD patients.  

Please keep these members in your prayers: 

Ronnie Ramos suffered a stroke recently; Manuel Terra is having back surgery this month; Urvano (Mo) Salaiz has been ill. 

We wish them all a speedy recovery, and hope that they will rejoin our group soon. 

The Fremont Support Group meetings are held on the 4th Monday of the month, at 7:00 PM, at the Fremont Senior Center, 40086 Paseo Padre Parkway, Fremont.

If you have any questions, please call Lettie Webb at 510-656-6393 or Bob Coon at 510-794-7988. 

Fremont Caregivers 

For information regarding the caregiver program in Fremont, please contact Nancy Rothschild, Caregiver Project Coordinator, at (510) 494-4268. 

Ladies wheel chair, looks almost new; call Pat at

408-356-8650. 

WWW.ELDERLAWANSWERS.COM, is where consumers and elder law attorneys meet. It offers some answers to elder law questions on the web, plus access to leading elder law attorneys nationwide. 

Edited from Avenidas Senior News, May 2003 issue. 

Hollister 

The Hollister Support Group meets on the 1st Tuesday of every month, from 1:30 to 3:30 PM, at First Presbyterian Church, 2066 Cienega Road, Hollister.

Please contact John Skinner at 831-637-6755, or Shirley Kennedy at 831- 637-3839. 

Magnolia-Peninsula 

September 11

Internal discussion of individual problems and helpful hints for coping 

October 9

Speaker: Richard Reimer, MD

Asst. Professor of Neurology, Stanford Medical Center

Will outline the scope of Stanford's treatments for Parkinson's patients 

November 13

Speaker: NiVonne Thompson, LCSW

Director, Outreach, The Parkinson's Institute

Will talk about what's going on at the PI 

December 11

Speaker: Daljit Johl, PharmD

Discussion of Parkinson's related medications 

January 8, 2004

Speaker: Theo Palmer, PhD

Asst. Professor of Neurosurgery, Stanford Medical Center 

February 12, 2004

Speaker: Ruth O'Hara, PhD

Asst. Professor of Psychiatry, Stanford Medical Center

Will discuss depression and other psychiatric aspects of Parkinson's 

The Magnolia-Peninsula Parkinson's Support Group meets on the 2nd Thursday of each month, at 1:30 PM, in the West conference room at The Magnolia of Millbrae apartment complex, located at 201 Chadbourne Avenue, corner of Magnolia, Millbrae.

For information call Leon Rosenthal at 650-348-3480. 

Marin County

October 28: SPECIAL EVENT: Marin Parkinson's Group pays tribute to the Redwoods by hosting a theatrical event, CURTAIN UP ! with musical theatre expert Bonnie Weiss

November 25: Donna Schrempp, Family Caregiver Alliance.

No meeting in December. 

The Marin Parkinson's Support Group meets on the 4th Tuesday afternoon of most months, from 2 to 4 PM, at The Redwoods auditorium, 40 Camino Alto, Mill Valley. The telephone number for The Redwoods is 415-383-2741. For information about the meeting, please contact Gloria Rasti, at 415-381-6680. 

Monterey 

We meet at the S.H.A.R.E Room, at Monterey Adult School, 200 Coe Ave., Seaside.The group meets on the 3rd Monday of the month, from 2:30 to 4:00 PM.

For further information, please call Kathy Warthan at 831-372-7510 or Helen Garret at 831-657-4241. 

Mt. Diablo Parkinson's Network

Basic meeting: Meets on second Mondays from 11AM 2:30PM at Grace Presbyterian Church, 2100 Tice Valley Blvd., Walnut Creek. The meeting includes a speaker, light lunch, exercise, and discussion groups. Contact Margy Hansell at 925-939-4210.

Early Onset Support Group: Meets on third Saturdays from 10AM noon at Grace Presbyterian Church, 2100 Tice Valley Blvd., Walnut Creek. Contact Nancy Wall at 510-236-7065, or Philip Wheeler at 510-527-3588.

Caregivers Support Group: Meets on last Wednesdays at Jewel Wallach's in Rossmoor, Walnut Creek. Call for time and address at 510-236-7065.

Pleasanton Tri-Valley Support Group: Meets on second Saturdays, 10AM noon at Senior Center, 5353 Sunol Blvd., Pleasanton. Contact Sal Vepa at 925-462-5838. 

Would you like to share with other readers any activities that interest you? Do you enjoy writing and telling stories about people's experiences? What makes you laugh? Would you like to volunteer and help? Do you enjoy making friends? Please write or call us. We welcome your input and contributions! 

Oakland 

The Oakland Support Group meets on the 1st Thursday of the month, from 1:30 to 3:30 PM at the Easter Seals Bay Area, 180 Grand Avenue, Suite 300, Oakland. For further information please call Robert Lemon at 510-526-2078. We thank Pharmacia & Upjohn and Boehringer Ingelheim Pharmaceuticals for their generous support of this meeting. 

Palo Alto

Sept 10 

Presenters: Suzanne Cottle, social worker, Department of Veterans Affairs Health Care, Palo Alto; Amy Quien, Neurology Nurse, Palo Alto Veterans Hospital. Topics: General resources for Parkinson's patients and how to access them; Advance directives: the how and why 

Oct 8

Presenter: Patrick Ryan, Medtronic

Topic: Deep Brain Stimulator 

November 12

Presenters: Elaine M. Lanier, RN, MS, Clinical Research Manager, SF Veterans Affairs Medical Center; Susan Heath, RN.

Topics: Non-motor Symptoms of Parkinson's

disease; the San Francisco VA Parkinson's Center and Deep Brain Stimulation surgery. 

December 10

Presenters: Mezo Kudumu and Jane Kerr

Topic: Tai Chi Exercise 

January 14, 2004

Presenter: Pat Kearney, Stanford Medical Center dietician and PD fitness specialist

Topic: Parkinson's and your diet 

The Palo Alto Support Group meetings are held on the 2^nd Wednesday of the month, from 2:00 to 3:30 PM, at Avenidas (the Palo Alto Senior Center), in the dining room (La Comida), 450 Bryant St., Palo Alto. For directions, call (650) 326-5362. For information on support group meetings, call Linda Chen, at (650) 493-9095. 

Redwood City 

PPAP-Positive People Against Parkinson's-meets on the 3rd Friday of each month, from 12:30 to 2:00 PM, at Sequoia Health & Wellness Center, 702 Marshall Street, Redwood City. Parking available in the rear. For more information, call the Sequoia Center at 650-367-5998. 

Salinas 

The Salinas Support Group meets every 4th Wednesday of the month, from 2:00 to 3:30 PM at The Salinas Adult School, 20 Sherwood Place, Salinas. For further information, please call Elaine Viens, at Delmar Research, 831-424-4359 X10. 

San Francisco 

The San Francisco Support Group meets on the third Tuesday of the month, from 2 to 4 PM, at Christ Church Lutheran, 1090 Quintara Street (at 20^th Avenue), San Francisco. For more information, call Julie Hevezi at 415-476-9276. 

San Jose

The San Jose Support Group meets on the 1st Friday of the month at St. Francis Episcopal Church, 1205 Pine Avenue, San Jose, between 10:00 and 12:00 noon. Please call Betty Havens at 408-269-2167. 

San Jose Caregivers

On November 26, the group is meeting at the Three Flames Restaurant, at 1 pm, at 1547 Meridian, San Jose; cross street is Hamilton Avenue. The phone number at the restaurant is 408-269-3133.

The San Jose Caregivers Support Group usually meets on the 4th Wednesday of the month, from 1:30- 3:30 PM at St. Francis Episcopal Church, 1205 Pine Avenue, San Jose. Please come to the meetings, we can learn from one another! For information, call Dr. Linda Filice at 408-978-2859. 

**November is National Family caregiver Month** 

San Mateo Caregivers

The group meets on the 1st Wednesday of the month, from 2:00 to 3:30 PM, Ellsworth Room, 100 San Mateo Drive, San Mateo. Call Mills Health Center, 800-654-9966. 

Santa Cruz

The Santa Cruz Support Group meets on the 1st Wednesday of the month at St. Stephen's Lutheran Church, 2500 Soquel Avenue, Santa Cruz, from 12:30 to 2:00 PM. For information, please call David Donahoe at 831-479-4485. 

Saratoga

The Saratoga Support Group meets on the 3rd Tuesday of the month at 19449 Via Real, Saratoga, from 2:00 to 4:00 PM. For information, please call Lois McPherson at 408-867-1807. 

Sonoma County

The Sonoma County Support Group meets on the 1st Saturday of the month, except July, September, and January, from 1-3 PM, at YMCA, 1111 College Avenue, Santa Rosa. For information, contact Davis Brown at 707-538-4952. 

Sunnyvale 

On November 12, Glenda Cresap, Director, Heart of the Valley, Services for Seniors, Inc., will speak to us about the services available at her organization.

On December 10, specialists at the Wound Care Clinic of O'Connor Hospital, San Jose, will come to talk about wound caring. Also, Marilyn Basham, noted Physical Therapist who worked at the Parkinson's Institute, will talk to us on tips about getting mobile.

The Sunnyvale Support Group meets on the 2nd Wednesday of the month between 1:00 and 3:00 PM at the First United Methodist Church, 535 Old San Francisco Road, Sunnyvale. For information, please call Dr. Linda Filice at 408-978-2859. 

This newsletter was assembled by

The Morgan Center in Santa Clara. 

Tulare-Kings (formerly Visalia)

The Tulare-Kings group meets on the 1st Friday of the month, at 10:00 AM, at Visalia United Methodist Church, 5200 W. Caldwell Avenue, Visalia, CA 93277.

For more information, please contact Mary Dickerson, at 559-622-9044. 

Turlock 

The Turlock Support Group meets on the 1st Thursday of the month, from 2-3 PM at Emanuel Hospital, Delbon Street, Turlock. For further information, please call Marion Johnson at 209-634-3157 or Jean Okuye at 209-394-2421. 

YOPD

(for patients under age 50) 

The group meets in the Board Room of Lucile Packard Children's Hospital, at 725 Welch Road, Palo Alto, CA, on 2nd Tuesday of every month, from 6:30 to 8 PM.

For information, please call Bill Lev at 831-662-3825. 

YPSG 

The Young Parkinson's Support Group meets on the 2nd Saturday of the month, between 10:00 AM and 12:00 noon at the YWCA, 4161 Alma Street, Palo Alto. For information, contact Rich Brongel at 650-952-3849, or email:rbrongel@ccsf.edu 

Quick Tips for Caregivers

A common side effect of caregiving is "loss of self." When you focus so much on the care recipient for so long you sometimes forget your own needs and interests. To remember to nurture yourself, try this: 

Maintain a "hopes" list. Keep a list of answers to these questions: 

* If I had an extra hour of time, how would I fill it?

* If I could take a long weekend break, what would

I do?

* If I could take a week-long vacation, where would

I go? 

Then when opportunities present themselves you will have some ideas of how to take advantage of them. 

Edited from Avenidas Senior News, May 2003 issue. 

Thoughts to Share

Source Unknown 

He who laughs last, thinks slowest. 

Everyone has a photographic memory. Some don't have film. 

A day without sunshine is like, well, night. 

On the other hand, you have different fingers. 

Change is inevitable, except from a vending machine. 

I just got lost in thought. It was unfamiliar territory. 

When the chips are down, the buffalo is empty. 

Seen it all, done it all, can't remember most of it. 

I feel as if I 'm diagonally parked in a parallel universe.

He's not dead, he's electroencephalographically challenged. 

You have the right to remain silent. Anything you say will be misquoted, then used against you. 

I wonder how much deeper the ocean would be without sponges. 

Honk if you love peace and quiet. 

Despite the cost of living, have you noticed how it remains so popular? 

Nothing is fool-proof to a sufficiently talented fool. 

It is hard to understand how a cemetery raised its burial cost and blamed it on the cost of living. 

The 50-50-90 rule: Anytime you have a 50-50 chance of getting something right, there's a 90% probability you'll get it wrong.

Artistic Jello

By Janice Aochi 

Ingredients:

2 large Jello boxes (grape and strawberry, or any 2 flavors/colors you desire)

7 packets of gelatin

Hot water

1 can Eagle Brand condensed milk 

Directions:

1. Make two 9 x 12 pans of Jello, each with:

a. 1 large box of Jello

b. 2 packets of gelatin

c. 2 cups hot water

2. Refrigerate until solid, then cut into squares.

3. Combine all the Jello squares in one 9 x 12 pan. Stagger squares and lay them relatively flat, no more than 2 layers high.

4. Prepare, in a glass bowl:

a. 1 can Eagle Brand condensed milk

b. 3 packets of gelatin

c. Add hot water until 3 cups are made.

5. Let cool to room temperature, so that it won't melt the squares.

6. Add this white layer to the Jello squares in the pan, then shake gently to remove air bubbles.

7. Refrigerate.

8. Cut into squares and serve.

PPSG Board Meetings

We welcome anyone to drop by our board meetings and share ideas with us! We meet on the 3rd Wednesday of the month between 1:30 and 3:30 PM at the Parkinson's Institute in Sunnyvale. Our next board meeting is November 19. To confirm meeting date and time, please call the PPSG office at 408-734-1593. 

Thank you so much for your donations!

Please use return address labels, to help us acknowledge your donations properly.

If you have any items for sale or donation, such as exercise equipment, wheelchairs, etc., please write to PPSG, call us at 408-734-1593, or post it at www.ppsg.org

Thank you so much for your donations!

Please use return address labels, to help us acknowledge your donations properly. 

If you have any items for sale or donation, such as exercise equipment, wheelchairs, etc., please write to PPSG, call us at 408-734-1593, or post it at www.ppsg.org. 

Ladies wheel chair, looks almost new; call Pat at 408-356-8650. 

Disclaimer

This document is published to promote a greater awareness of the problems caused by Parkinson's disease. Neither the Peninsula Parkinson's Support Groups, Inc., its members and employees, nor the individuals involved in its production make any warranty, express or implied, assume any liability or responsibility for accuracy, completeness, or usefulness of any information or represent that it will not infringe privately owned rights. Mention of any product, material, or service shall not, nor is it intended to, imply approval, disapproval, or fitness for any particular use.