Jun 14

Lazy Summer Permission Granted

Reflective Walk on Country Lane to Family House

Summer is the annual permission slip to be lazy.
To do nothing and have it count for something.
To lie in the grass and count the stars.
To sit on a branch and study the clouds.
~Regina Brett

To Do Nothing

Eighty-eight degrees at 7 a.m. in North Palm Beach! But summer does not officially start until June 21! Who are we kidding! Summer is here. When I taught full-time, summer began the minute my grades were submitted. Now it starts when my volunteer work is finished. My last Daughters of the American Revolution meeting was the first of May, and the last American Association of University Women’s dinner club was the end of May.  A common question at these finales was “What are you going to do this summer?” Sometimes, the answer for me is to almost do nothing!

I recall one year our graduation speaker challenged graduates to think about the hyphen between when they were born and when they are no longer on this earth and to use that time wisely. I believe wise use of time is important for all of us. However, the tendency for a person with Parkinson’s is to do things slower. You get discouraged when half-started projects pile up. Then guilt sets in. However, you need to be good to yourself which may include giving a pass or permission to slow down. Doing almost nothing for a while may prime you to tackle the important responsibilities later. However, remember exercise is Parkinson’s medication. So I will continue my walking, Tai Chi, stretching and medical or therapy appointments.

 I Love Summertime

What I love about summer is the flexibility and more white space on my calendar. The Florida pace slows down, and traffic is less congested. I no longer have to wait for a table in a restaurant. Attendance at Tai Chi and PD support group drops, and individualized attention is possible. I enjoy having time to recharge, replenish, revitalize—whether it’s at my tropical home in South Florida or at the family farm in Missouri. For the first few days of June, I rested and did fun stuff like staying in my pajamas all day. I puttered around the house and yard and redesigned a tabletop display. It took me awhile to unwind. After reflecting on the first five months 2019, I realized they were jammed with activities, responsibilities and experiences:

Why I Need to Recharge

Self-Care:  Road trip to University of Florida’s Movement Disorder Center to meet with physical therapist, occupational therapist and speech therapist, Lunch n Learn PD support group meetings, Parkinson’s Foundation community education event, Tai Chi classes, trigger point massages, daily walking, daily stretching, diagnostic tests, chiropractor, neurologist, cardiologist,  podiatrist, urogynecologist  and dentist appointments

Family:  Sister-in-law in hospital, followed by my brother, 90-year-old aunt passed away with Alzheimer’s

Pets: Took Grace, Chauncey and Maggie Mae  for vaccinations, changed diet, got water fountain

Social: Hosted 69th birthday party, hosted dinner club, attended three dinner clubs, several lunches with girlfriends, re-connected with a couple of old friends, spring training baseball game

Professional:  Researched, wrote and posted twenty-seven Parkinson’s My Way blogs, interviewed two artists, designed business card, wrote free report for email blog subscription, attended annual library book sale and three rummage sales for eBay inventory finds, wrote an acrostic poem for a contest, taught online strategic management course, evaluated twenty-eight students’ prior learning assessment portfolios

DAR:  Prepared monthly newsletter reports, presented oral monthly meeting reports as chairman of DAR school committee, checked in attendees and dressed as flapper at annual fundraiser, contributed donations to fundraiser, served as meeting greeter and did a show and tell introduction of myself, served as executive board director and advised regent, received 10-year membership award, received DAR school committee project award for second place out of 106 Florida chapters

House:  Tented and fumigated for termites and beetles

My Lazy Hazy Days of Summer

My summer will go with the flow, and I will do what feels right. This moment it is curling up on the couch with Grace, Chauncey or Maggie Mae and taking a short nap in the middle of a typical tropical rain. Now who can argue with that?

What do you like most about summer? How will you spend your summer?

Blessings!
Linda

 

 

Jun 11

Royal Poinciana’s Inspirational Beauty

 

He who plants a tree plants a hope. ~Lucy Larcom

The first time I viewed this magnificent tree in bloom I was in awe. The year was 1977, and I had relocated to Palm Beach County. Forty-two years later, my reaction is the same. The royal poinciana tree, also known as the flame or flamboyant tree, has orange/red petals and a yellow and white center. It can grow forty to fifty feet in height, and often the umbrella shaped crown is greater in width than the tree’s height.

Although I do not have a royal poinciana on my property, I enjoy several views within a couple minutes of my house. My daily walk in the neighborhood is punctuated by the dazzling flowering beauty during May and June. How’s that for spring time in Florida?

Blessings!
Linda

Photo Credit:  Linda A. Mohr

Jun 04

Parkinson’s Foundation Free Genetic Testing and Counseling Study

On May 30, 2019, I attended the Parkinson’s Foundation New Frontiers in Research and Care community educational event. Meeting in Palm Beach Gardens four miles from my home made it a “must see” event.

Dr. Anna Naito serves as a Director of Research Programs at the Parkinson’s Foundation national headquarters in Miami, FL. She has been involved in PD research for over ten years. While earning her PhD in neuropharmacology from the University of Southern California, she researched dopamine pathways in the brain.

What is PDGENEeration?

Dr. Naito is now responsible for leading the Foundation’s flagship program to offer free genetic testing and counseling through the PDGENEeration five-year study. It will provide genetic information that will lead to improving care, expanding research and accelerating enrollment in clinical trials. The objective of PDGENEeration is to offer free genetic testing and counseling to all people with Parkinson’s. In the spring of 2019, six pilot studies started in the Northeast, Midwest and West coast with 600 people. The $1500 free test for seven mutations is scripted by a movement disorder doctor. Genetic counselors are available. During the expansion phase, the goal is 15,000 total participants in five years across approximately fifty Center of Excellence and Parkinson’s Study Group sites.

Genetic Study Steps

    1. Schedule appointment if eligible
    2. Have blood drawn as well as clinical and cognition evaluation
    3. Test blood which will take six weeks
    4. Follow-up report with doctor
    5. Complete survey on your satisfaction level and how it changed your care

A sign-up list was provided for those of us in South Florida who were interested in being notified about future free testing in 2020. (Yes, I signed up!)

What About At Home Genetic Tests?

Audience questions related to 23andMe home test. Dr. Naito emphasized you should definitely share results with your doctor. However, it only tests for two mutations—LRRK2 and GBA and does not offer a clinician and genetic counseling. The comprehensive PDGENEeration study tests for LRRK2 and GBA plus five other common PD mutations and provides clinical and cognition evaluation by a movement disorder specialist and counseling by a genetic counselor.

Contacting PD Foundation

To learn more about the PDGENEeration, visit here.  Or call 1-800-4PD-INFO.

The Foundation is recruiting 600 participants to enroll in the 2019 study. For more information regarding their need and your eligibility, please email [email protected].

Blessings!
Linda

 

 

May 27

Grandma’s Teachings: Honor Loved Ones on Decoration Day

Red Poppy–Symbol of Sacrifice and Remembrance

I am a part of all that I have touched and that has touched me. ~Thomas Wolfe

My most precious memory of my grandma, Charlotta Estella Seyb Mohr, is spending countless hours by her side at an impressive round oak pedestal table with animal claw feet. I adored her and enjoyed spending time at her home in rural Missouri. That was real easy to do since she  lived about a mile where I grew up.

Family life centered on the heartbeat of the house. What she taught me remains part of my being. I close my eyes, and the table turns into a flower shop on Decoration Day (a day dating back to 1868). We tour her beautiful gardens and pick fragrant spring flowers such as peonies, poppies, irises, snowballs and bleeding hearts. Grandma prays nature will hold the rain for the weekend to preserve these fragile flowers. We make a list of loved ones whose graves we will visit and adorn. Then we arrange the flowers in vases and buckets.

Always Honor Your Loved Ones

“Always honor your loved ones,” she says. I learn that red poppies symbolize remembrance of those who have fallen in war. Grandma’s faith sustained her after losing her mother at age two and her younger brother in World War I at age twenty-two. I choose pink peonies to memorialize my great-grandmother Charlotta. Red poppies blaze on my great-uncle Rupert’s grave.

The Why Behind Red Poppies

When I was older, I learned more about the significance of the red poppy. In 1918, Moina Michael bought a bouquet of poppies and handed them out to businessmen at the New York YMCA because of the poignant effect the poem In Flanders Fields had on her. She asked them to wear the poppy as a tribute to the fallen Americans in World War I. She led a campaign that designated the poppy as the official flower of The American Legion in 1923.

During World War I, American soldiers were buried in the pastures and on the battlefields of Europe, where bright red poppies grew wild among the fresh graves. While caring for the wounded near one of the battlefields, a Canadian doctor, Lt. Col. John McCrae, jotted down these opening lines: “In Flanders fields the poppies blow/ Between the crosses, row on row. . .”

The American Legion Auxiliary is recognized as the world’s largest women’s patriotic service organization. Thousands of crepe paper poppies made by disabled and hospitalized veterans are given out for donations to benefit disabled veterans.

Photo by Bob Fehringer, USTRANSCOM/PA

Video Reading of In Flanders Fields

In 2015,  Legion Magazine and Leonard Cohen released  a powerful video reading of In Flanders Fields on YouTube to commemorate the 100th anniversary of the poem by Lieutenant-Colonel John McCrae. Cohen’s voice is accompanied by stirring imagery from the First World War and helps me to understand what my two heroic great-uncles experienced.

In Memory of My Great-Uncle Rupert Seyb

PVT. RUPERT C. SEYB

My great-uncle, Rupert Carl Seyb, enlisted in Sanborn, South Dakota, on June 5, 1917. He served as a private in Company F, 350th Infantry with American Expeditionary Forces. He died from influenza in Naix, France, on February 23, 1919, at twenty-six years, two months, sixteen days. He is buried at Saint Paul Cemetery near Kahoka, Missouri.

Honoring his place of death, Naix, France

Rupert Seyb Memorial Card

Rupert C. Seyb Grave Stone

In Memory of My Great-Uncle Carl Roasa

PVT, CARL A. ROASA

My great-uncle, Carl A. Roasa, was inducted into the Army/Marine unit on July 5, 1917, in Kansas City, Missouri. He served overseas from May 20, 1918, until January 17, 1919, where he died in France of pneumonia at twenty-two years, ten months, eight days. His parents, Albert and Laura Roasa, bought land, planted trees and started Granger Cemetery for the burial of Carl Albert. He was the youngest of six children including five boys and one girl. I read in Carl’s war records that his mother was notified of his death. Although I never met my great-grandmother, I can picture her receiving this devastating news of her beloved son, and my heart breaks.

Carl A. Roasa’s Grave Stone

Carl’s memorial card included this beautiful James Whitcomb Riley poem:

I cannot say and I will not say
That he is dead—He is just away!
With a cheery smile and a wave of the hand,
He has wandered into an unknown land,
And left us dreaming how very fair
It needs must be, since he lingers there.
Mild and gentle, as he was brave
When the sweetest love of his life he gave.
Think of him as the same I say:
He is not dead—He is just away.

A Soldiers’ Memorial was established near the Scotland County Courthouse in Memphis, Missouri, in 1923, led by the Betsy Ross Club. Other organizations joined forces including Home Guards, Order of the Eastern Star, and Mothers of Soldiers.The names of the soldiers who made the ultimate sacrifice from the area were chiseled on the memorial pillars. The honor roll of twenty-five soldiers includes Carl A. Roasa. The engraving reads “In memoriam to the boys from Scotland County 1914 ~ World War ~ 1918, they gave their all for liberty and democracy.”

Soldiers’ Memorial

Honor Roll

Although I am not in Missouri this Memorial Day weekend, I will visit the Granger Cemetery as well as the Saint Paul Cemetery later this summer.  I pause to reflect on what my two great-uncles’ service and their ultimate sacrifice mean to my life, and I am deeply grateful.

In my mind’s eye today, grandma is watching me arrange pink peonies.

“Your bouquet is breathtaking,” she says.

“Thank you grandma!”

Blessings!
Linda