Greater Fresno Parkinson’s Support Group
"Helping to optimize the quality of the lives of People With Parkinson's and their Care Partners."
ELLEN’S CORNER:
With Mother’s Day and
Father’s Day coming up, I’m
reflecting on my very special
parents. I don’t recall Mom
Max Robinson Ellen Jablonski ever having more than an
C o – L e a d e r s occasional cold or insect bite
to deal with health-wise. Then
about three years ago, Mom survived a stroke which resulted
in “temporary” or possibly “vascular” Parkinsonism, (having
symptoms of Parkinson’s disease but not from the same cause
and usually not responding to PD treatments). My Dad then
became her Care Partner. Such lengths to go through to better
understand their daughter’s Parkinson’s disease which I’ve
had over ten years! They relate even more now to my struggle
of either having “function but no gumption” or “gumption but no
function” and some of the challenges of my various symptoms,
medications, social concerns, and with the healthcare system.
This brings to mind yet another value of our Support Group:
We’ve had a few people who by talking with our Members and
comparing experiences only then realize they may not have
actual Parkinson’s disease after all and would then go to get a
2nd or 3rd opinion from doctors and have found out they have
other conditions than PD and require different treatments. As
post-stroke Parkinsonism is among those “other” conditions,
this is an opportunity to convey the following:
Stroke Symptoms include: SUDDEN: numbness or weakness
of face, arm, or leg—especially on one side of the body;
confusion, trouble speaking, or understanding; trouble seeing
in one or both eyes; trouble walking, dizziness, loss of balance
or coordination; or/and severe headache with no known cause.
To ascertain if someone is having a stroke, use the first four
letters of the word “STROKE” to remember what to check for:
“S:” ask him/her to SMILE. “T:” ask him/her to TALK
coherently a simple sentence such as, “It is sunny out today.”
“R:” ask him/her to RAISE both arms. “O:” ask him/her to
OPEN his/her mouth and stick out his/her tongue—if it is
crooked or goes to one side or the other, that is also an
indication of a stroke. If s/he has trouble with ANY ONE of
these tasks, call 911 immediately: time is crucial to recovery!
I love you Mom and Dad!
Bring on the cure!
Ellen Jablonski, Co-Leader
HAPPY MOTHER’S DAY!
MAY 2008 MEETING
When:
Saturday, May 10, 2008, from
10:00 a.m. until noon.
Where:
In the Chapel of The Bridge Evangelical
Free Church, 3438 East Ashlan Avenue,
Fresno, CA 93726, at the southeast corner
of Ashlan and Bond between First and
Millbrook (enter parking lot on Ashlan).
Our Program:
Geriatrician Dr. Robb Smith, Jr. will give a presentation
on dementia and Parkinson’s disease followed by a
question and answer session.
After our stretch and refreshments break, we will have
a general discussion and more “Show and Tell,” so
bring items and tips about which to share (including
those that don’t work so we may learn about them).
Please respect the confidentiality of personal medical information revealed to one
another in our meetings. Always check with your own doctor before changing your
medications or treatments based on what you read in this Newsletter or hear at our
meetings from others, even medical experts, because Parkinson's disease is such a
complex disease and our respective bodies react differently to the disease and to
the medications and treatments prescribed to treat it.
OFFICERS
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Ellen Jablonski
Co-Leader, Editor & Librarian
Max Robinson
Co-Leader
Russell Templeton
Assistant Leader
Getting to Know PETER and ATHENA ROCKAS:
Joycelyn Lock
Treasurer
Peter and Athena live in a beautiful Fig Garden home and
look back with pleasure on the 60+ wonderful years since
they were married in the Greek Orthodox Church in San
Francisco on February 15, 1948. They met as students at
U.C. Berkeley where Pete, a native Fresnan, studied to
become an engineer, and Athena, a San Francisco girl,
was a Phi Beta Kappa language and anthropology major. Those were War years, and in
1943, the Army sent Pete first to the University of Iowa for specialized training in
engineering, then to the Philippines.
Shirley Robinson &
Dottie Rosenberg
Hospitality Committee
Pete and Athena continued their friendship as pen pals; Athena didn’t know Pete was
writing to ten other girls, nor did she tell him that she had many correspondents on other
battlefronts. All’s well that ends well—at War’s end, Athena had graduated and was
working, and Pete finished his degree at Berkeley and took a job as an engineer in the
Fresno County Public Works Department. Friendship blossomed into love as Pete drove
to San Francisco most every weekend to see Athena. They honeymooned in Yosemite,
and both tried skiing for the first time. There were just a rope tow and a short lift and,
amazing as it may seem now, very few people. Athena says, “It was heavenly!”
They settled in Fresno—a dramatic change for Athena who had lived all her life in San
Francisco. Pete continued working for the County of Fresno for a total of nine years,
then took a job as Assistant City of Fresno Engineer, later joining a private engineering
firm. He ended his working career in business for himself as a consulting engineer.
Athena had many rewarding experiences working over the years as a part-time teacher
for Fresno Unified School District, but her main focus was in raising their three wonderful
children: Christine (1951), Patricia (1954), and Alex (1956). Life was exciting for their
very active family. There were many school and family activities and the fun “Greek
Festivals.” The Rockas’s enjoyed summer and winter activities at their vacation home on
“The Point” at Shaver Lake. Pete was a sports enthusiast and also took up flying. By the
time the children were away at school, Pete had a pilot’s license and owned a v-tail
Bonanza. He and Athena flew frequently and as far away as New Mexico, Mexico, and
Oregon. They had “close calls” including a couple of forced landings, but when
mentioned, Pete would just say, “You made it, didn’t you?”
The Rockas’s are world travelers. When their elder daughter moved to Japan, they
visited two and three months at a time. They made many trips to Greece where they
each have family; explored spots in New Zealand, Malaysia, Indonesia, and Australia;
and have taken many cruises. Their children moved away giving further opportunity for
travel to visit them. There are also six grandchildren: three boys and three girls.
A couple of years ago, Pete was diagnosed with Parkinson’s which has brought a
number of changes, but Pete and Athena remind us that “Life is still good!”
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Sue & Doug Jackson
Membership Committee
Anne Guenther
Care Partners Group Leader
Bill Houk
Assistant Librarian
Gerhard J. Lang
Fundraising Specialist
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STEERING COMMITTEE
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Our Officers above listed and:
Allen Guenther
John Klassen
Stuart Snider
Anthony Turano
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FOUNDING MEMBERS
of our Predecessor Groups
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Valley Parkinson’s
Support Group:
Allen & Anne Guenther
Max & Charlotte Wolfe
North Fresno Parkinson’s
Support Group:
Dottie Rosenberg
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WEBMASTER
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Frédéric “Fredo” Martin
Workingarts Marketing, Inc.™
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ACKNOWLEDGEMENTS
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Our thanks to:
The Bridge
for our meeting room;
and to Reyes Sandoval of the
Center for Independent
Living for his presentation
and helpful materials.
IN MEMORIAM
Glenice Perrin
FOR MORE INFORMATION,
TO UPDATE OUR MAILING LIST,
OR TO SUBMIT MATERIALS OR
SUGGESTIONS, CONTACT:
Ellen Jablonski (559) 298-4080
[email protected] or
Max Robinson (559) 226-2673
5110 North Fruit Avenue, #122
Fresno, CA 93711-3060
[email protected]
www.FresnoParkinsons.org
Synopsis of Our 4/12/2008 Meeting: Reyes Sandoval, Client Assistance Program Advocate/Center for Independent Living
(“CIL”) Specialist, 3008 N. Fresno St., Fresno, CA 93707, (559) 221-2330, www.cilfresno.org, outlined the free services they
provide such as helping the disabled by interceding with employers for accommodations and obtaining subsidized housing
where/when available. CIL Peer Support meetings, 1st & 3rd Wednesdays each month, 2:00-3:30pm, include discussion and
activities about disability/life issues, computer skills, assistive technology, independent living skills, disability rights, etc.
Afterwards, we discussed: the 5/3/08 PD Unity Walk; the 9/6/08 - 9/7/08 Young Onset PD Retreat at Wonder Valley Ranch
for which volunteers are needed—contact our Group Member Dan Carter (559) 683-6658 or Viviane Tondeur
Coordinator, APDA Info. & Referral Center (866) 499-2732; swallowing difficulties and speech therapy; solutions for nausea
caused by “Sinemet” (eating saltines or taking cola syrup can work or get a prescription for Lodosyn—don’t use OTC antinausea meds without checking with your doctor first); R.L.S. vs. PD; and drinking tonic water to relieve muscle cramps.
For “Show & Tell:” Ellen Jablonski brought a pepper grinder for which only one hand is needed to use, and she made
available a manual for a washlet/bidet; Max Robinson volunteered that Members may bring in nail clippers in a bag or
envelope with their names on it and he’ll attach the clippers to acrylic stabilizing bases; Russ Templeton gave details of the
new Book Study Group using “The Pilgrim’s Progress”—call him at (559) 297-8685 for info; Bette Foster reminded us that
CTAP provides free easy-to-use phones (see more info below); and Dan Carter described a funnel he devised by cutting off
a corner of a small wood crate from a cheese gift box to solve difficulties getting nails, pills, and such back in containers.
California Telephone Access Program (“CTAP”) Has Moved: They are now at the northwest corner of Cedar and Alluvial
at 7525 N. Cedar Ave., Suite 115, Fresno, CA 93720, open 9-6 M-F, (800) 806-1191, www.ddtp.org. CTAP provides free
phones and services to those certified as having difficulty (including restricted mobility as with PD) using phones.
Librarians' Notes: Check out the materials in our Lending Library. Donations of items about PD are greatly appreciated.
See our website www.FresnoParkinsons.org for links to reading material that can be downloaded to read online.
Minocycline, Creatine, CoQ10 MAY Slow PD Progression: 2/23/2008 (AP) WASHINGTON—A study funded by NIH
suggests minocycline (a prescription-only antibiotic) and creatine (a substance produced in muscle tissue and available in
dietary supplements) may slow worsening of PD. "We are not concluding that these agents are useful, just that they are not
useless," cautioned Dr. Karl Kieburtz who led the study. A similar study will analyze dietary supplement CoQ10. NIH will test
whether ANY of them truly work. “The Holy Grail would be a simple, easy-to-take pill that would lower the risk of worsening
Parkinson's much like an aspirin a day can lower people's risk of heart attacks. “We don't have a drug like that right now,
and we don't know of such a drug," cautions Dr. Diane Murphy who oversees PD research at NIH.
Treasurer Joycelyn Lock's Report: Our Wells Fargo Bank 4/23/08 statement beginning balance was $1,095.01. Donations
of $80.00 on 4/12/08 made the balance $1,175.01. Cleared office expenses/supplies checks totaling $50.00 leave a
$1,125.01 ending balance. Checks totaling $155.68 for April meeting and Newsletter expenses are outstanding, leaving an
adjusted ending bank balance totaling $969.33. Many thanks to our contributors!
Fresno Regional Foundation: No donations were made in April to the Foundation’s “Parkinson’s Support Fund.” The Fund
balance is now $2,300.93 after deduction of the Foundation’s quarterly administrative fee of $24.99.
Peer Counselors for Care Partners:
Anne Guenther:
(559) 322-7076
Sue Jackson:
(559) 434-7928
Shirley Robinson:
(559) 226-2673
Or get info and support online at:
Caring From a Distance:
www.cfad.org
Family Caregiver Alliance:
www.caregiver.org
National Family Caregivers Assoc.:
www.thefamilycaregiver.org
Well Spouse Association:
www.wellspouse.org
Chuckle of the Month: Two seniors who had dated but parted in
high school met again at their 50th class reunion. Lost love was
quickly rekindled, and they soon were planning their wedding. At
a local drug store, they questioned at length the pharmacist/owner
as to whether he had various prescription drugs and over-thecounter remedies and supplies including Ex-lax, hemorrhoid
treatments, Depends, Tums, denture cleaners, hearing aid
batteries, etc., etc. The patient owner said he sells all such items,
“…but why are you asking me all these questions?”
Their response was: “We want to use your drug store as our
wedding registry.”
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Featured Website: “My Parkinson's Info” is now “Parkinson's Hope Digest.” To receive the free “HopeDigest” monthly
e-Newsletter and periodic updates, register at www.hopedigest.com. The site also has great links!
Wanted re PD: Amusing Anecdotes, Poetry, Art, and Tips: Submit items to Ellen Jablonski or Max Robinson (see contact
information on Page 2). Thanks to “Contributing Editors” who provided sources for segments of our Newsletter!
THE 2nd ANNUAL TULARE-KINGS PARKINSON’S SHUFFLE…I MEAN WALK:
It was a wonderful, beautiful day and
a very successful event Saturday,
May 3, 2008, at Blain Park in Visalia
which was well attended from
beginning to end, 8:00 a.m. till
2:00 p.m. The total for the 2008
Parkinson's Unity Walk contributed
locally via this event to date is
reported as $27,411.95! All donations
go to research and are dispersed
among seven national Parkinson’s
research organizations. It is estimated
that at least 500 people attended over
the course of the day.
Max & Shirley Robinson, Wayne & Bette Foster, Ellen Jablonski, Jan & Russ Templeton, Debby & Dan Carter
The weather was perfect—around 81 degrees with a very mild breeze and plenty
of shade trees. The approximately one-quarter mile side-walked path around the
Park with wheelchair accessible exercise stations allowed most attendees to
take in a walk, shuffle, or wheelchair ride. There were plenty of refreshments
provided and the delicious lunch was catered by Vintage Press.
Sound Waves Swing Band, Director Gerald Bowles
Bruce McDermott was the Honorary
Chairperson. He retired due to PD at age 44
as Police Chief of the City of Visalia and now
volunteers for numerous philanthropies.
Bruce had Deep Brain Stimulation surgery
with great results and highly recommends it.
Max Robinson, Bruce McDermott,
and Mary Dickerson
Mary Dickerson (whose husband Bob
had DBS in 1999 and passed in 2002)
has been involved since 1994 with what
is now named the “Central Valley
Parkinson’s Support Group.” She is
currently their much beloved President.
Ellen Jablonski practiced what she preaches:
Dancing and “Dancercise” are great exercises and
are a way to release the spell of a “freezing of gait”
episode. Dancing and/or listening to uplifting music
can also relieve depression.
Ellen Jablonski & Max Robinson with
Emcee Johnnie Batista
Ellen Jablonski with Michael Lewis of Screen Radio
The event was available live around the
world by Michael Lewis via Screen
Radio, www.screenradio.com, who also
donated help creating the new website
and logo for “Central Valley Parkinson’s
Support Group,” www.CVPSG.org.
Golden West High School Band, Director Jim Powell
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Live entertainment included:
Redwood High School Band,
Golden West High School Band,
High Grade Pats Irish Band,
Sound Waves Swing Band, and
singer Damian Carter.