Newsletter for Encinitas/Cardiff, Fallbrook & Oceanside Parkinson’s Support Groups January 2018

NORTH COUNTY PARKINSON’S SUPPORT GROUP

Exciting Wrap-up to 2017!

Inside This Issue

• Event Calendar Page 2 • In Focus: Marty Acevedo Page 3 • NCPSG Annual Budget Just feel the excitement! Bet you want to turn there first! Page 4

• MJFF: Positive LRRK2 Clinical Trial results Page 4

Tremble Clefs bring Holiday music

to Oceanside Support Group

Annual NCPSG Holiday Luncheon

and “Distinctive” Sweater Competition

Parkinson’s Association San Diego

EMPOWERMENT Event

Belmont Village provides our meeting space at their Cardiff facility at no charge.

Please let them know we appreciate it!

Physical Exercise

CARDIFF LOCATION - Tuesdays & Thursdays 11am - noon (NCPSG Sponsored) Encinitas Elks Lodge, 1393 Windsor Rd., Cardiff. Take I-5 to Santa Fe exit east to Windsor Rd. and turn right. (Fee charged). Call Betty Byrd 760-635-1144.

OCEANSIDE LOCATION - Fridays 11am - Noon Tri-City Hospital, 4002 Vista Way, Oceanside, Assembly Room, check room on arrival. (Free) Valet parking available. Call Tracy Park, PT, 760-940-3617.

DANCE FOR PARKINSON’S - NEW TIME: Thursdays 2:30 - 3:30pm (NCPSG Sponsored) Space donated by the Performing Arts Workshop, 1465 Encinitas Blvd. A102, Encinitas. (East of El Camino Real) Led by Cheryl (Balbes) McIlhon, professional dance instructor. Optional social gathering following. Call Cheryl McIlhon 248-755-7431.

PERSONALLY FIT - Tuesdays & Thursdays 2pm - 3pm Parkinson’s exercise classes at Personally Fit in Rancho Bernardo. (Fee charged.) Call 858-485-6706 for more information. Silver Sneakers accepted for entrance.

Vocal Exercise

AudAbility - This music therapy program offers numerous music related activities for People with Parkinson’s including harmonica & drumming. (fee charged) For more information, call Lindsay Zehren at 858-457-2201 or email lzehren@musicworxinc.com.

Tremble Clefs -Therapeutic Singing Tuesdays 1pm - 2:30pm St. Andrews Episcopal Church, 890 Balfour Dr., Encinitas. New members always welcome. (Free) Call Deanna Hastings at 619-363-0814 or check website: www.trembleclefs.com/san-diego

. Small Social Groups

Our small social groups gather in rotating private homes on the third Monday of each month that we don't have a large group activity . Come and join us in a safe environment where we all understand and support each other. Contact Sam Cooper, Social Chair, scprphd@gmail.com or call/text 520-820-0339.

Support Group Meetings

ENCINITAS/CARDIFF - Wednesday, January 3rd 1pm - 3pm (NCPSG Sponsored) (first Wednesday of each month) at Belmont Village, 3535 Manchester Ave., Cardiff. Speaker: Josephina Olvera Topic: Clinical Trial Opportunities Free valet parking from 12:30pm until 3:30pm. Care & Share & Refreshments. Call Rex McCoy 760-519-9588. OCEANSIDE - Wednesday, January 10th 1pm - 3pm (NCPSG Sponsored) (second Wednesday of each month) at First Presbyterian Church Oceanside, 2001 S. El Camino Real at Fire Mountain Drive, Oceanside. Speakers: Our Own Panel of Experts Topic: Surviving Your Visit to the ER Despite their incredible expertise and dedication, the ER staff may not be prepared to deal with your Parkinson’s issues. You must prepare to be ready for the inevitable. We’ll help. Care & Share. Refreshments. Call Paul Dawson 760-497-1200. FALLBROOK Friday, January 24th 10am - noon. (NCPSG Sponsored) (fourth Friday of each month) at Christ The King Lutheran Church, 1620 S. Stage Coach Lane, Fallbrook. Speaker: Scott Gibson, Attorney for Elder Care. Call Irene Miller 760-731-0171 ATYPICAL Parkinson’s (Caregivers only) Wednesday, January 3rd 11am-1pm (first Wednesday of every other month) at Tri-City Wellness Center, 6250 El Camino Real, Carlsbad. Contact Jim Reiser 858-245-2093, jreiser@hospicenorthcoast.org ATYPICAL Parkinson’s (PwP & Caregivers) Monday, January 15th 1pm - 3pm (third Monday of the month) at UCSD, East Campus, 9423 Health Science Drive, Medical Center Modular 1, Room 140, La Jolla. Call Darlene Gerow 619-806-9649.

NCPSG Board of Directors

Wednesday January 17th 1pm - 3pm Tri-City Wellness Center, large conference room, 6250 El Camino Real, Carlsbad. Contact Paul Dawson 760-497-1200

Happy New Year 2018!

By Sam Cooper

Marty Acevedo grew up in east Tennessee and graduated from the

University of Tennessee with a degree in nutrition and dietetics.

She and her husband Mike, or Ace as he is often called, have been

married 18 years and she is stepmother to two adult children and a

ten year old grandson, Riley. Their rat terrier, Hobbes, completes

their Oceanside family.

Her 32 year career at Tri City Medical Center including being the

Director of Food and Nutrition, Environmental Services, and

Patient Transportation. She retired in 2015 on a medical disability,

Marty notes "I have yet to find myself bored" and stays busy with travel. She and Ace just returned from a

ten week trip through fourteen states and six national parks. Her activities include exercise and yoga,

following their favorite sport teams, and enjoying family and

friends. "I'm also a pretty darn good cook."

She was first diagnosed with essential tremor after a hip

replacement in 2004, but knew even then she had multiple

Parkinson's symptoms and was diagnosed with such by a

neurologist in 2010. "My gait is a concern. I also struggle with

balance issues and have rigidity and pain in my hands, feet,

and lower back. I have fallen a number of times. I had DBS

(Deep Brain Stimulation) and that helped a lot."

When she isn't traveling she participates in the Parkinson's

program at Tri City Wellness Center, does yoga three days a

week, an exercise class, and forced cadence stationary cycling.

She attends our NCPSG meetings and events and does the Word

Jumble, the crossword puzzle and Sudoku in the morning paper,

including the most challenging Sunday's edition!

"In addition to educating yourself, exercising and socializing are

the key things we can do. Keep yourself busy, busy, busy!"

"I have been part of the NCPSG since 2013 and became a

member of the Parkinson's Association of San Diego Board and

serve as the Board secretary. I am a patient advocate for research

with the Michael J. Fox Foundation and a liaison between the

Foundation and support groups." If all this weren't enough, our very own Energizer Bunny has been heavily

involved in research. "I have done many clinical studies related to physical therapy and PD at UCLA and

USC. I have participated in a MJFF study to identify biomarkers for PD and multiple studies at UCSD as well

as Fox Insight and a study at Bastyr University that is looking at the effects of nutrition on PD."

Marty cites her husband and family as "my absolute rock". She also credits our North County group. "The

NCPSG is truly a family. We were welcomed from the get-go. Everyone is so supportive and passionate. The

care partners are exceptional and those with PD are so inspiring. It really shows that you do not have to be

alone on this journey. There are many others to walk with you. But you have to reach out."

"Exercise more. Move. Get out of the house. Socialize. Learn as much as you can. Ask questions. Be your

own advocate. Do not define yourself by your Parkinson's. Don't let our disease become who you are. I am

not a Parkinson's patient named Marty. I am Marty who in addition to having a wonderful husband and family

and friends and a full rich life happens to have Parkinson's."

In Focus: Marty Acevedo

Do not define yourself by your Parkinson’s. Don't let our disease

become who you are.

I am not a Parkinson's patient named Marty.

I am Marty who in addition

to having a wonderful husband

and family and friends and a full rich life,

happens to have Parkinson's.

Serving San Diego County with four locations:

Carlsbad, Escondido, Poway, La Jolla

760-631-3000

Our continuing thanks to the

Neurology Center of Southern California

for our Newsletter printing and postage.

CONTACTS

Encinitas/Cardiff Support Group Leader

Rex McCoy rmcco@cox.net

NCPSG Board Vice President 760-519-9588

Encinitas/Cardiff Co-Leader johnchaffin5@aol.com

John Chaffin 760-633-2214

Oceanside Support Group Leader

Paul Dawson paul@video-fire.com

NCPSG Board President 760-497-1200

Oceanside Co-Leader granny6mb@gmail.com

Madonna Bingham 760-757-7564

Fallbrook Support Group Leader

Irene Miller pmiller179@aol.com

760-731-0171

Treasurer

Betty Byrd 760-635-1144

Recording Secretary

Caryl Parrish 760-753-5004

Corresponding Secretary micheline.allen@cox.net

Micheline Allen 760-631-0649

Parkinson’s Association Liaison

Thelma Balbes (PA Board member) 760-918-9887

Social Director scprphd@gmail.com

Sam Cooper 520-820-0339

Video Documentation

Arthur Bierle 760-749-2182

Library granny6mb@gmail.com

Madonna Bingham 760-757-7564

Newsletter

Publisher paul@video-fire.com

Paul Dawson 760-497-1200

Editor stephenflester@gmail.com

Stephen Lester 510-301-1919

Focus Interviews scprphd@gmail.com Sam Cooper 520-820-0339

Printed Edition Distribution granny6mb@gmail.com Madonna Bingham 760-757-7564

Electronic Distribution micheline.allen@cox.net Micheline Allen 760-631-0649

NCPSG Budget FY/CY 2018

Your Board of Directors plans to publish

our annual budget each year as it is approved.

Passed by Board of Directors November 15, 2017:

CATEGORY DESCRIPTION AMOUNT

Annual Participant Registration First $25 per couple $2,575

Miscellaneous Donations Donation beyond initial $25 $2,000

Grants – Income None applied for as of 11/2017 $0

Memorial Donations Donations as memorials $500

Miscellaneous Income None anticipated as of 11/2017 $0

50/50 Raffle Half of raffle tickets $700

Fundraising Events Events not identified as of 11/2017 $500

Dance Class Fee ($10 pp/m) Fee per individual – one day/week $1,400

Exercise Class Fee ($15 pp/m) Fee per individual – two days/week $2,700

Annual Holiday Luncheon Ticket full cost recovery only $1,800 Annual Picnic Anticipate fee $5 per person $400 TOTAL INCOME $12,575

Exercise Class – instructors (3) $3,900

Dance Class – instructor (1) $2,250

Holiday Luncheon $1,800

Annual Picnic $700

Annual Potluck $175

Conferences, Panels $500

Space Rental, Support Group meetings $1,200

Meeting Refreshments $300

Library Materials $100

Office Supplies $150

General Liability, Directors & Officers Insurance $1,250

Postage $150

Printing $100

Grant Expenses $0

TOTAL EXPENSE $12,575

Michael J. Fox Foundation: LRRK2 Trial Progress An early study has just reported positive results in an LRRK2 clinical trial, showing that a biotech company’s experimental treatment is safe and exerts the desired effect in body cells, setting the stage for future trials. Learn more on the Michael J. Fox Foundation website.