Extended Outreach at PPSG

By Elliot Schrier, Chair

   The Peninsula Parkinson’s Support Groups, Inc. was founded “to provide a variety of supportive services to victims of Parkinson’s disease and their families, and to educate, inform and help the general public become aware and knowledgeable about Parkinson’s disease.”  PPSG’s newsletter has long been, and will continue to be, the main avenue for communication with its 29 affiliated support groups and the Parkinson’s community at large. The 8-times-a-year support group newsletter reaches about 1,000 patients, caregivers and others; the expanded quarterly newsletter about 3,500.    

   Having said that, in the past year PPSG has expanded its other outreach efforts significantly. The keystone of the expanded program is closer two-way cooperation with The Parkinson’s Institute. PPSG has been working with TPI since the Institute was founded 15 years ago. Now, with both organizations aware of the increasing importance of outreach as the rate of research results and new therapies quickens, they are collaborating on six projects, three of which take the message to the community:

1.   Three meetings with support group leaders.  PPSG has divided the support groups into three regions: Southern (San Jose to Tulare), Peninsular (Santa Clara to San Francisco), and Northern (Santa Rosa to Turlock). With TPI’s participation, PPSG has organized meetings of the group leaders in each region. The meetings will provide an opportunity for group leaders to discuss mutual problems, needs, and experiences; to meet with TPI clinic staff; and generally to increase the resources they can draw on in the future. 

2.   Three mini-seminars on Parkinson’s research and treatment.  Senior TPI research and clinic personnel will travel to the three regions to present half-day seminars on the latest information on Parkinson’s research and treatment.

3. Caregivers recognition luncheons. If there is one segment of the Parkinson’s community that deserves special recognition, it is the caregivers. PPSG will sponsor caregiver recognition luncheons in each region, with special accommodations for their patients who cannot be left alone.  

   The other three projects on which TPI and PPSG are collaborating are an annual all-day seminar on Parkinson’s disease, with outside experts and patients; an annual volunteer recognition luncheon; and a speakers’ clearing house for use by the support groups and other organizations. In supporting these projects, PPSG is acting like a government body: running a deficit. We believe, however, that an extended outreach program is the best use of the surplus that PPSG has created over the years. Nevertheless, we will need additional funds and additional help.

It’s Back!!! The Annual Parkinson’s

Disease Symposium:

Thursday April 22, 2004

Topics To Be Covered —

Latest Research Findings

Newest Drug and Surgical Treatments

The Environment and Parkinson’s Disease

Overview of Medications

How to Make Your Environment Work for You

And Many, Many More!

For more information, please contact the Outreach Department at 408.542.5657 or 800.786.2958

Summary of trial information: Study of Spheramine in advanced Parkinson’s

disease (The STEPS Trial)

   The purpose of the STEPS clinical research study is to evaluate the effect and safety of Spheramine implantation in patients with Parkinson’s disease.

   Spheramine is a cell therapy that consists of human retinal pigment epithelial (RPE) cells attached to microscopic gelatin beads (microcarriers). Participation

in the clinical study will be for approximately 2.5 years, with 17 visits to the study center.

 You may be eligible to participate in this research study if you:

• are between the ages of 30 and 70

• have had symptoms of PD for at least 5 years and are in        advanced stages of the disease (late stage; bilateral symptoms)

• are currently experiencing insufficient control of your PD symptoms even with optimal medical treatment

• your symptoms improve when you take L-dopa

You are not eligible to participate in this study

   if you:

• have previously had brain surgery for Parkinson’s.

• have participated in another clinical trial within the previous 3 months

• have abnormal blood clotting

• have a seizure disorder

• have active cancer

If you are interested, please contact 866-STEPS03

Special thank you to Linda Chen, leader of Palo Alto Support Group, for forwarding this information.

The Morgan Center assists PPSG in the assembly of the newsletters on a regular basis. They fold, tape, and label the newsletters then sort the newsletters by zip codes for bulk mail processing. The issue numbers of the PPSG newsletters range from 1000 to 3500, depending on the type of the newsletters.

Recently moved from Los Altos to Santa Clara, The Morgan Center provides valuable contribution to PPSG, and we really appreciate their dedication.

Singing Birds May Lead To New Health Discovery

   What do birds and botox have to do with the human brain? There’s a unique study going on at the neuroscience and behavior department at Wesleyan University. It’s basic research that could lead to new treatment for Alzheimer’s or Parkinson’s disease. Watch the story with News Channel 8’s Jocelyn Maminta http://video.wtnh.com/news/2003/nov/clips/11242003-botox.ram Birds sweet sound could be the high note researchers are looking for in trying to understand how a human brain functions.

   Birds are unique among warm blooded animals in that they continue to produce new brain cells in a really widespread manner throughout life. How that could lead to therapies for brain damage in humans has John Kirn overseeing a study with songbirds at Wesleyan University. That’s because the canary and the zebra finch are able to produce new brain cells specifically for singing.

   It provides us with a very specific part of the brain to look at in terms of trying to relate brain functions to behavior. There is something else unique about this research.

   They’re using botox to figure out how the birds are able to manufacture new cells. The botox is injected, temporarily paralyzing the birds’ vocal chords so they can’t control making their own music. This gives an idea which components of this complex behavior are in fact regulating neuronal replacements. You can actually hear how the botox impacts the birds’ song. It’s certainly not as clear as the first time you heard it. If researchers are able to determine how songbirds regenerate new brain cells to replace old ones they could find a way to duplicate that process in the human brain. The study is being funded by the National Institutes of Health. The results will be published next May. SOURCE: WTNH, CT http://www.wtnh.com/global/story.asp?s=1538594&ClientType=Printable

Free to good home:

Adjustable Bed

Contact TPI Outreach Services at 408-542-5644 for more information.

Berkeley

The group meets on the 3rd Monday of the month at the Northbrae Community Church (new location). The address is 941 The Alameda, Berkeley and the meeting time is 10:00 AM-12:00 noon.For information, call Mitzi Cahn at 510-527-9075.

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

The Daly City Support Group meets on the 1st Tuesday of the month, from 3:00 to 4:00 PM, at Doelger Senior Center, 101 Lake Merced Blvd., Daly City. For Support Group information, please contact Leonard Ke

at 415-587-1285.

Fremont

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.

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.

Available

*Free, convalescent chair. Call Helen: 408-244-7331.

*Power Chair with ramp and charger, $2,000. Contact Robert Coon at 510-794-7988, Fremont.

*George Desalernos wants to donate to support group and/or individual an exercise cycle. 650-344-4228.

Magnolia-Peninsula

February 12, 2004

            Louanna Blackton, R.N., B.S., Nursing Consultant, Geriatrics, will talk about issues related to aging.  

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  

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 Garrett 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. Call 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 information at 510-236-7065.

Pleasanton Tri-Valley Support Group: Meets on second Saturdays, 10AM – noon at Senior Center, 5353 Sunol Blvd., Pleasanton.

For information call Sal Vepa at 925-462-5838.

Oakland

On January 8, we viewed a spectacular video showing a radically new type of brain surgery called gene therapy.

We are indebted to one of our members, Shiena Thomas, who, at great effort, secured this tape and explanatory materials for our use. Thank you, Shiena.

For our February 5 meeting, Howard Lunche will lead a period of personal exploration and sharing about the changes brought into our lives by Parkinson’s. Mr. Lunche is a Licensed Clinical Social Worker with many years of experience in dealing with hospice care with facing loss.

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.

Palo Alto

On January 14, the speaker for our meeting was Patricia Kearney of Stanford Medical Center. Ms. Kearney is a Parkinson’s Nutrition specialist.

The topic: Maximizing Your Health Through Diet

On February 11, 2004, the speaker will be Lynn Fieldstein, a Parkinsonian Advocate.

   The topic: The Politics of Parkinson’s Disease

The Palo Alto Support Group meetings are held on the second 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 meeting information call Linda Chen, at 650-493-9095. For directions, call (650) 326-5362.  

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.

Redwood City

Friday, January 16. Gastroenterologist Vicky W. Yang, MD, of the Peninsula Gastroenterology Medical Group discussed Parkinson’s effect on our disgestive systems, including that old bugaboo often experienced , seldom discussed (shhhh) — constipation.

Friday, February 20. You’ve heard about Stalevo — the new drug that combines the qualities of Sinemet and Comtan to increase “on-time” and decrease “off-time,” just introduced in 2003! Novartis Pharmaceuticals, marketer of Stalevo, has promised a medical professional will be with us to discuss the new product.

Friday, March 19. Neurologist Charan Singh, MD, who was the featured speaker at PPAP’s initial meeting in 1997, has first-hand experience working with Parkinson’s patients of all ages. As you know, if you’ve heard her speak (she has honored us with two previous appearances), Dr. Singh has broad knowledge of Parkinson’s  and speaks with both compassion and understanding.

Friday, April 16 On your toes (figuratively speaking, of course)! Physical Therapist Jeanne Williams will be making a repeat appearance to help us get our bodies, brains and muscles more active. Whether we’re in a wheelchair or walking with a cane, she inspires us to helpful physical activity — sometimes in time to music!

Our thanks to Lois and Bob who have volunteered to provide refreshments for 2004.

P.S.- Your suggestions for speakers/topics are always welcome —call Ray at 650- 593-4172.

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.

Kujiweza Healing Arts

Email: Yogataichikung@aol.com

Contact: Jane at 408-315-1179

Class Meets: Saturdays 10 - 11AM, followed by Practice & Questions: 11 - 11:30AM

Location: Atrium of Stanford Hospital (ground floor) in Palo Alto

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 (new contact), at Delmar Research, 831-424-4359 x 10.

San Francisco
Join Us at The New Downtown San Francisco Parkinson’s Disease Support Group Meeting

Speaker: NiVonne Thompson LCSW, from the Parkinson’s Institute

Date: February 4, 2004

Time: 5:30pm - 7:00pm

Location: Holiday Inn- Chinatown

Address: 750 Kearny, San Francisco (Kearny and Washington) Room: Take elevator to 4th floor Conference Room (look for meeting signs). Parking is free and available for this monthly meeting. Parking is located under the hotel off both Kearny and Washington streets.

For more information please call 415-710-6306 or visit www.bayareaapda.org  See you there!

San Jose

Our January 2 meeting was open discussion. Everyone came with questions and concerns.

The February 6 meeting will be Head Tremors and Parkinson’s, presented by Rob Fields, who works at Clinical Research Department at the Parkinson’s Institute.

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

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 or Dr. Charmaine Eng at 408-733-8116.

San Mateo Caregivers

The group meets on the 1st Wednesday of the month, from 2:30 to 4:30 PM (new time), Ellsworth Room, 100 San Mateo Drive, San Mateo. Call Mills Health Center, at 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 (new leader) 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. For meeting location and information, contact Sue Croel at 707-544-5151.

Sunnyvale

   Our December 10 meeting was a huge success with 35 people attending. Our speakers were Theresa Cetani and Jena Eidschun from the Wound Care Clinic of O’Connor Hospital. We learned about wound care and how the patients are treated at the clinic. Thank you, Theresa and Jena.

   At this meeting, noted physical therapist Marilyn Basham also joined us. Marilyn will speak to us in the future about “Getting Mobile.” Thanks, Marilyn!

We also had our annual Christmas Party. Le Sotir and her helper, Tess Castro, made beautiful decorations and prepared many delicious dishes including turkey, ham, mashed potatoes, sweet yams, dressings, Greek salad, cookies, just to name a few. Together with dishes brought by other members, we had a feast! Thank you so much, Le and Tess! The day after our meeting, December 11, was also Le’s birthday. Happy birthday, Le!

   For the January 14 meeting, we had open discussion about coping with Parkinson’s; we shared tips, and had some laughs.

For the February 11 meeting, NiVonne Thompson, LCSW, the new Outreach Director of the Parkinson’s Institute, will be our speaker. The topic is Depression and Parkinson’s. Also at this meeting we are celebrating Valentine’s Day. All are welcomePlease come join us at the party.

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, or Phyllis and Henry Ng at 408-733-5648.

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 (new leader), 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 Live Oak Room, at United Methodist Church of Los Altos, Foothill Expressway and Magdalena Avenue, Los Altos. For information, contact Rich Brongel at 650-952-3849, or email:rbrongel@ccsf.edu

Deadline for the March  support group newsletter is Friday, February 6. Articles of contribution must be received by PPSG by the above date. Thanks.

This newsletter was assembled by

The Morgan Center in Santa Clara.

Seminars by Family Caregiver Alliance

It Takes Two: A Refreshing Approach to Understanding Dementia Behavior

*    Where/When:
El Cerrito, Wednesdays, Jan. 7 - 28, 10:00am - 12:00noon;
Danville, Tuesdays, Feb. 3 - 24, 10:00am - 12:00noon;
South SF, Wednesdays, Feb. 4 - 25, 1:00 - 3:00pm;
San Rafael, Thursdays, Mar. 4 - 25, 1:00 - 3:00pm;
San Francisco, Fridays, Mar. 5 - 26, 10:00am - 12:00noon;
San Leandro, Wednesdays, Mar. 17 - Apr. 7, 1:00 - 3:00pm.

*   Sponsors: Family Caregiver Alliance, El Cerrito Royale, Reutlinger Home for Jewish Living, the Alzheimer’s Association and Carlton Plaza, City of South SF Senior Services Adult Daycare

*     Content: A four-week class to help caregivers of people with memory loss to better understand and communicate with them. Learn new ways to respond to troubling behavior. Feel more confident and positive about your caregiving role. Pre-registration required. Sliding scale fee.

*     Contact: For more specific information and to register, call 800-445-8106. For the El Cerrito, Danville, and SF classes, ask for Beth; for San Leandro, ask for Jo; for San Rafael, ask for Donna; for South SF, ask for Lois.

Taking Care of You: Powerful Tools for Caregiving

*    Where/When:
San Carlos, Thursdays, Jan. 8 - Feb. 12, 9:30am - 12:00noon;
Walnut Creek, Mondays, Apr. 19 - May 24, 10:30am - 1:00pm.

*     Sponsor: Family Caregiver Alliance, San Carlos Senior Center

*     Content: Learn clear and effective tools to prevent caregiver burn-out. This class teaches self-care skills, enabling caregivers to: reduce personal stress, change negative thinking, better communicate with family and healthcare providers, and to make difficult caregiving decisions.

*     Fee: Sliding scale, some scholarships available. Pre-registration required.

*     Contact: To register, call 800-445-8106, ask for Beth.

NEW   What’s Up, Doc? Communicating Effectively               with Health Care Professionals

*     Where: Oakland, Kaiser Permanente

*     When: Saturday, March 20, 9:30am - 12:30pm

*     Sponsor: Family Caregiver Alliance

     *        Content: Would you like to make the most of each visit with the doctor? Are you looking to get more of what you and your loved one needs from the health care

ystem? This workshop for family caregivers of someone with a chronic health condition will provide practical strategies on how to get organized, ask for what you need, and learn how to better advocate for your loved one’s health care. Free. Class size is limited.

*     Contact: For more info or to register, call Kaiser at (510) 752-6150.

When Everyone Talks and Nobody Listens: Working Together with Your Siblings

+      Where: Walnut Creek, Contra Costa Jewish Community Center

+      When: Thursday, April 15, 7:00pm - 9:30pm

+      Sponsor: Family Caregiver Alliance

+      Content: This workshop will focus on common conflicts among siblings when providing care for a family member and how to foster agreement and cooperation. Caregivers will learn tips for more effective communication, ways to encourage participation, and strategies to work things out.

+      Contact: To register for this workshop, call Ilana at (925) 927-2000, ext. 763 or (510) 704-7430, ext. 763.

NEW Take Time to Smell the Roses

*     Where: Martinez, John Muir National Historic Site

*     When: Tuesday, April 27, 10:00am - 3:00pm

*     Sponsor: Family Caregiver Alliance, John Muir National Historic Site

*     Content: Join us on a one-day “fresh air retreat” designed especially for family caregivers. Enjoy a continental breakfast and catered lunch, a powerful presentation on the importance of taking care of YOU, and an afternoon in one of California’s beautiful national parks. Take time to smell the roses and enjoy beautiful natural surroundings. Enjoy a guided tour of the historic Muir Home, and grounds and take a stroll through the orchards. Pre-registration required. Space is limited so call soon.

*     Contact: For more information, call (800) 445-8106, leave message at ext. 411.

NEW