Memories of My Father

My favorite photo of my father and me goes way back to 1953.  He was thirty-five and I was three-years- old. He was dressed in his favorite attire as baseball was his life’s passion. Later I understood hitting a baseball was his God given talent. This sport made its way into my heart. When I  remember my father, baseball is always part of the memory bank.

 

 

 

Welcome to Parkinson’s My Way

Home is behind the world ahead and there are many paths to tread through shadow to the edge of night until the stars are all alight. J R.R. Tolkien

Welcome to Parkinson’s My Way

I have been a teacher and writer for over four decades. When I was diagnosed with Parkinson’s disease in 2014, my work and literary world became one with the Parkinson’s world. Isak Dinesen believed “all sorrows can be borne if you tell a story about them”,  and I have found that to be true. Writing has always been my “go-to tool” for facing adversity.

Parkinson’s My Way is how I journey one day to the next with a chronic, progressive degenerative illness by keeping my interests alive. Days are rarely alike. A  variety of interests that still define who I am include antiques, travel, baking, animals, nature, reading, photography, family farm, education and DAR.

Along the way, I discovered a fascinating gift of this perplexing neurological disorder. Studies find some people with Parkinson’s begin a new creative pursuit such as painting, sculpting or writing. For me it is poetry. This website will share “creativity in motion” by showcasing people with Parkinson’s artistic work, as well as mine.

Before PD, my personal mission was “to make a heartfelt difference” and that is unchanged. Through my sharing in Parkinson’s My Way, the intent is to educate, to inspire, and to give hope.  Some posts will deal with Parkinson’s head on. Other times I will bake a cake or recommend a good book!

If just one of you benefits from my thoughts, experiences, recipes, poetry or photography, I will consider this mission a success. Perhaps you have Parkinson’s disease or are a caregiver. Maybe a friend of yours was just diagnosed with PD. Whatever the reason that you are visiting, I welcome you and your comments.

Blessings!

Linda

Grandma’s Teachings: Honor Loved Ones on Decoration Day

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. 88th Division with American Expeditionary Forces. He was sent to Camp Funston, Kansas and Fort Dodge, Iowa for a short time.  He sailed from Long Island, New York to France in July, 1918.  He died due to valvular heart disease and  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

In sunny France

there came a chance

To test his soul in blood:

He didn’t stop–but o’er the top

He went–and he made good.

And that is why we dare not cry

As his brave soul passes on;

His name’s enrolled on Fame’s

bright scroll

Our glorious valiant son.

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 included 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

On this Memorial Day weekend,  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,”

“Thank you grandma!”

Blessings!
Linda

 

 

 

 

13 Tips for a Successful Telemedicine Appointment

1950 House Call

I grew up in the 1950s when doctors made house calls. My mother rang up an operator from a wooden telephone on the kitchen wall and was connected to Doc Gray. Although we lived four miles from town, she took care of us day or night. I remember Doc Gray sitting on the edge of my bed and watching over me when I had the mumps, measles, chicken pox and flu. Her black bag and pink liquid medicine intrigued me as she was never without either one. Although I was sick and often was given that icky pink stuff, I liked Doc Gray to come to the house.

2020 Virtual Call

Seventy years later, a telephone still connects me to a doctor. But a few things have changed. A phone is now smart, and a house call is virtual. The Center for Medicare and Medicaid Services expanded telemedicine coverage due to COVID-19. During a six-week period in April and May, I had three telemedicine appointments using digital technology. From the safety and convenience of my home, my healthcare providers observed my condition, assessed medication changes, conducted a neurological exam and transmitted a prescription.

13 Tips for a Successful Telemedicine Appointment

1. Get specific instructions on how the appointment will be conducted? Will it be FaceTime, a Zoom meeting or some other app? Is it best to use your smartphone, tablet, laptop or desktop computer?

2. Download any necessary apps and test in advance. If you encounter difficulties, contact your healthcare provider for additional help. Practice again. For example, if your provider is going to use Zoom, you could do a practice meeting with a family member.

3. Plan in advance where to set devices for clear images. Take into consideration lighting and glare. Is anyone else going to be in the room? How does seating area look? Do you need to remove clutter?

4. If you have journal notes that you want the provider to review in advance, arrange the transfer with office personnel.

5. Prepare just as you would for an  office consultation. What are two or three questions that you need to ask? Review notes from last visit. What has changed? What follow-up questions can you expect your provider to ask you?

6. Be aware if you need any prescriptions refilled.  Request 90-day prescriptions. Have the name of the pharmacy, phone number and drug bottle handy.

7. Record your weight, blood pressure and temperature prior to appointment if these procedures would commonly be done in office. If you do not have a blood pressure cuff, you will find a wide selection online. Your provider may also want to watch you take blood pressure, sitting and standing. Keep cuff nearby.

8. Inform other household members to avoid interruptions. Arrange to have someone on standby to operate the camera if your provider conducts an examination.

9. Charge electronic devices and check connections prior to appointment.

10. Situate ten minutes prior to start of appointment. Have pen, paper, notes and water handy. Quiet the area by turning off background noise. Move curious pets and/or children to another room. Power up any needed devices. Do 1-minute deep breathing calming meditation.

11. Be clear at end of appointment what happens next? Will staff call you to schedule follow-up appointment? How is payment handled? When will prescriptions be transmitted?

12. Be patient. It is not unusual for there to be technical challenges. Both your healthcare provider and you are learning together.

13. Treat the telemedicine appointment as the real deal. Be willing to give it a try even though this tool has not been readily available to you prior to COVID-19. You may discover this time-saving, hassle-free alternative is right for you.

For further information regarding coverage, visit https://www.cms.gov/Medicare/Medicare-General-Information/Telehealth/Telehealth-Codes

Blessings!
Linda

The post 13 Tips for a Successful Telemedicine Appointment appeared first on Parkinsons My Way.

 

 

 

Happy Mother’s Day

Linda and her mother

Mother and Linda at Hotel Nauvoo 6-7-09

Mother, mom, ma, mamma, mommie, or mum…..I called my mother “mother” as did my sister. My brothers called her “mom”. When I was a little girl, I called her “mommie”.

This beautiful mother quote found at Cracker Barrel resonates with me.. “Mother…she not only gives us life, she teaches our souls to sing”.

The passage reminds me of another quote I found on our annual mother-daughter summer jaunt. After visiting the Field of Dreams in Dyersville, Iowa, in 2006, we stopped at Country Junction Restaurant. The perfect sentiment to honor my mother, our trip and our precious time together was embroidered on small pieces of red and tan gingham and displayed in a rustic frame:

“All that I am or hope to be I owe to my mother”—Abe Lincoln

A Mother’s Perspective

Then we have a mother’s perspective in the following powerful quotes: “Before you were conceived I wanted you. Before you were born I loved you. Before you were here an hour, I would die for you. This is the miracle of love.”—Maureen Hawkins

“When you were small and just a touch away, I covered you with blankets against the cold night air. But now that you are tall and out of reach, I fold my hands and cover you with prayer.”—Dona Maddux Cooper.

My Mother’s Day Ritual

This is my 11th Mother’s Day without her. She passed away on July 1, 2009, less than four weeks after the above family photo. Precious memories of my dear mother sustain me today along with a prayer and poem ritual. With folded hands, I send her a prayer:  “Thank you for teaching my soul to sing. May God keep you always in His loving embrace.”

Lilacs were her favorite spring flower. We had purple and white lilac bushes at the farm house. By a heavenly miracle, a sprig or two of white lilacs burst into bloom seventy years later my brother reports!

Memories

by Mildred M. North

Again the lilac blossoms sway
Above the windowsill,
And every white or purple spray
Exotic perfume spills.

Again the orchard rows are sweet
With drifts of blossom snow,
And every breath of fragrance fleet
Brings thoughts of long ago.

So clear, so precious, memory sees
The old home, Mother dear,
And lilac blooms and apple trees–
The joys of yesteryear.

Blessings!
Linda

Sewer Makes Masks to Help Keep People Safe

Sample of masks made

When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” To this day, especially in times of “disaster,” I remember my mother’s words and I am always comforted by realizing that there are still so many helpers—so many caring people in this world. ~ Fred Rogers

What does a talented sewer who has a fabric stash that rivals a JOANN store and who wants to help people on the front lines of the coronavirus pandemic do? She makes masks! “I quit counting at 200,” said Clare Schmidt of Lincoln, Illinois. She sent the first batch of masks to her granddaughter who is a CNA at Great River Medical Center in W. Burlington, Iowa. “They needed them badly and were so appreciative. I was glad to help.”

Photo of sewer who makes masks

Clare Cameron Schmidt

Commitment

Following the Illinois stay-at-home COVID-19 order on March 20, Schmidt’s Facebook post “Doing my part to get out of time out in Illinois” appeared that evening. She included a link for the A.B. Mask-for a Nurse by a Nurse pattern. ER nurse and designer Jessica Nandino stated on Instructables, “this pattern could be how seamstresses in our communities communicate their solidarity. The mask says, I see you. I worry about your safety and want to contribute in the way I know how.”

Passion for Sewing

Schmidt has been sewing since she was seven-years-old. “We had an old black Singer Featherweight. Some of the best memories of my mom were her helping me with the sewing machine and loving the outfits I created. She took me to the store, and I picked a pattern and fabric. She helped me lay it out. I entered my projects in the Clark County Fair in Kahoka, Missouri with her help. She was so proud of me.” Schmidt also credits 4-H sewing volunteers and Mrs. Bailey’s home economics class in fueling her interest for sewing. “I just love to sew. It has always been my passion,” she said.

Sewing gives Schmidt a sense of accomplishment when she helps those in dire need, whether it be animals or people. This winter she made kangaroo pouches, bat wraps and koala mittens for Australian animals burned in the massive fires. This spring she makes masks to help keep people safe during the coronavirus pandemic.

Fabric Stash

“I took over the second story of my house after my children grew up. I have a sewing room and  another room filled with every fabric imaginable. Luckily I have a big stash including team fabric that I can use instead of going out to the store. It is the most popular for the masks,” she said.

Schmidt’s team masks represent Chicago Bears, Chicago Cubs, St. Louis Cardinals, Green Bay Packers, Illinois State University (where her granddaughter graduated), University of Illinois, Iowa State University, Kansas City Chiefs and University of Iowa. Her stash also has Harry Potter, Star Wars, Minnie Mouse and other novelty prints.

Shows fabric designs for making masks

These working stacks will result in 73 masks!

Most popular team mask made

University of Iowa is the Most Popular Team Mask

Construction Time

Nandino’s A. B. Mask is designed to be worn in two ways. First, the mask fits directly over the face, similar to a surgical mask. Secondly, the pleats expand to fit over a N-95 mask to provide a protective barrier, in the hope of extending the lifetime of the respirator. Schmidt constructs a mask with two layers of 100% cotton and a flannel pocket in the back where a Hepa filter fabric or coffee filter for extra filtration can be placed. She adds wire around the nose to secure a better fit. She first made them one by one in thirty minutes. But she learned by doing each step on twenty masks at a time, she could chain piece them and be more efficient in her solo operation. “I try to improve my sewing skills with each project,” she said.

seeing mask is in production

Husqvarna Viking Designer 2 Machine

Donating and Distributing

When not sewing masks, Schmidt distributes them. Her daughter-in-law is a registered nurse and another granddaughter is a CNA at a nursing home. Many of her friends are nurses in Iowa and Illinois. EMTs, a funeral director, a chiropractor, friends with elderly parents, essential workers and other family members are not forgotten. “I do not charge for the masks. It is a donation on my part to use whatever talent I have to try and get us through this virus. I am humbled by the people on the front lines of this pandemic. I want them to feel more comfortable with an extra layer of protection,” she said.

St. Louis Cardinals second most popular mask made

St. Louis Cardinals Second Most Popular Team Mask

Helping the Heroes of Today

Retired from EATON Corporation, Schmidt is known for her beautiful quilts and handmade stuffed animals including memory bears and sloths. In a normal year, her award-winning work would be found at the Illinois State Fair, Logan County Fair and Christmas vendor booth in Lincoln. For now, Schmidt is focused on this “emergency sewing situation” as she calls it. With her beloved long-haired miniature dachshunds Pepper and Izzy nearby on her favorite quilt, she is committed to making masks for as long as her help is needed.

“I am in awe of all the workers on the front lines who work endless hours treating this virus. They are the special ones. Their dedication is inspiring, and I cannot thank them enough. They are truly the heroes of today,” she said.

Photo of sewer's two dachshunds on twister quilt

Pepper and Izzy on Twister Quilt

The post Sewer makes masks to help keep people safe appeared first on Parkinsons My Way.

Photo Credits: Clare Schmidt

Coronavirus Michael J. Fox Webinar Highlights

There is no reason to believe that having Parkinson’s raises the risk for contracting the coronavirus.

The webinar “Information Coronavirus for the Parkinson’s Community” sponsored by Michael J. Fox  Foundation on March 19 opened with the above reassuring  thought.

Panel Members

David Aronoff, MD, Director of Division of Infectious Diseases, Vanderbilt University
Katherine Leaver, MD, Assistant Professor Neurology,  Mount Sinai
Caroline Tanner, MD, PhD, Professor Neurology,  University of California-San Francisco
Ted Thompson, JD, Senior Vice President, Michael J.  Fox Foundation

Who is at Risk?

The response to the virus varies wildly from being asymptomatic, a nuisance to hospitalization and to death. If you are above the age of 60, you are a major risk for more severe symptoms and worse outcome. The same is true if you have a compromised immune system from cancer treatment or have heart disease or diabetes.

Since many people with Parkinson’s are over 60, it is recommended to take special care.  You may feel worse symptoms such as being “off” or moving more slowly if you get the virus. But you will return to your PD baseline when you feel better. If you are more advanced with PD, or are frail or weak, you will take longer to recover.

Virus Transmission

The virus is spread by respiratory droplets with a range of transmission six feet. The virus lives on surfaces such as tables, door knobs and hands. When you inadvertently touch your face, eyes or mouth, you may increase your chance of transmitting the virus. Staying home and using proper hand hygiene will help keep the virus from spreading like wildfire.

Finding Reputable Information

Avoid the mania in social media. Instead focus on two or three reputable sites such as Health and Human Services (HHS) and Center for Disease Control (CDC).

If you want to take medicine to treat or lessen any of the symptoms of virus, talk to your doctor or pharmacist. For example, ibuprofen may harm the kidneys or cause stomach ulcers. Acetaminophen found in Tylenol, Nyquil and Theraflu can cause liver toxicity.

Pharmacy, Insurance and Office Visit Changes

Having access to your PD medicine and getting refills is a current concern. Check with your insurance company. Some companies are waiving the 30-day limit. Some pharmacies are offering free delivery. Telehealth services by phone or computer are even being offered by various  medical offices.

Minimize Effects of Isolation

You need to minimize the effects of isolation. One way is to keep moving. Take a walk  outside keeping in mind social distance. The sunshine and fresh air will help relieve stress, fear and anxiety.  Find an online exercise resource and work out. Be proactive and reach out to family and friends by using technology to stay connected.

Ending Advice

Don’t panic
Stay calm
Follow reputable news sources only
Good change in telemedicine is resulting
Help is available

For more information about Michael J. Fox webinars, visit here

Blessings!
Linda

 

Finding the Sunlight

Keep your face to the sunshine and you cannot see the shadow. ~ Helen Keller

Chauncey is a master at finding any ray of sunlight that streams into the house. Most cats are! This morning I paused as I passed through the living room. He was stretched out inside the front door in a rectangle of light that was just his size. His focus was on something other than me. I quickly headed upstairs to get my camera. How light reflects and refracts  fascinates me. The surprises that appear such as Chauncey’s silhouette on the floor or his face on the outside glass door cause me to smile.

The other interesting observation from this unscheduled photo shoot was I did not have time to change the surroundings and it did not matter. The first photo has three felines: Chauncey, a framed white cat and a white cat needlepoint pillow. In the end , it all worked out!

9-Year-Old Chauncey Boy Sees Himself

Thanks Chauncey. What a great way to start the day!

Blessings!
Linda

Message in a Baggie Love Story

May beauty always touch your life as beautifully as you have touched mine. ~Kenneth Kraft

“Whenever I spotted the message in a baggie, I flew down the stairs two or three steps at a time…..My heart fluttered, and my hands shook as I read Ken’s morning missive. Tears often dotted my face like rain drops beading on the baggie. One such tear-stained note”….Excerpt from Message in a Baggie.

I hope you had a special Valentine’s Day last week. Any day is the perfect day to show our appreciation and devotion to loved ones; that is why I am posting Message in a Baggie on February 19!

In 2016, I entered a love story contest and submitted Message in a Baggie. My true love short story can be read in less than three minutes by scrolling down to the third place winner at Past Loves.

Blessings!
Linda

 

 

 

 

 

A Vintage Happy Valentine’s Day

If you’ll cook up a liking for me
My Valentine
I’ll waiter round for you

I collect vintage valentines and all stuff feline. So here you go! This is an anthropomorphic valentine, circa 1930s. The diecut valentine stands 4 1/2″ tall and folds in four places. The manufacturer is unknown.

Look at that face!

Whimsical and fun with lots of detail

Blessings!
Linda

Poetry by Laura Ding-Edwards

The Tetons

The Mountain Poem

If the mountain seems too big today then climb a hill instead
if the morning brings you sadness it’s okay to stay in bed
if the day ahead weighs heavy and your plans feel like a curse
there’s no shame in re-arranging don’t make yourself feel worse
if a shower stings like needles and a bath feels like you’ll drown
if you haven’t washed your hair for days don’t throw away your crown
a day is not a lifetime a rest is not defeat
don’t think of it as failure just a quiet kind retreat
it’s okay to take a moment from an anxious fractured mind
the world will not stop turning while you get realigned
the mountain will still be there when you want to try again
so climb it in your own time and love yourself til then

Poem by Laura Ding-Edwards
Author and artist, Laura lives in rural Herefordshire. Her poetry book The Mountain was released in October 2019.  I discovered her Mountain poem posted on a Facebook support group that I follow. Although the poem does not specifically refer to Parkinson’s disease, I found line after line resonating with my chronic disease journey. My favorite thought is “a rest is not defeat…..just a quiet kind retreat.” Laura can be contacted at https://www.facebook.com/RainbirdRoots/

Photograph by Linda A. Mohr
Joe and I visited the Grand Teton National Park in 2018. The spectcular snow capped mountain peaks are awe-inspiring. Yes, the Teton Mountains will be there whenever I want to return!

Blessings!
Linda