How to Travel Lightly with Parkinson’s

Oxford Summer Experience 2017–My Meadows Double Gothic Window Stone Balcony at Christ Church

My packing philosophy is: Keep it light. You may have to lift it.

However, I have slowly evolved. Flashback to Paris when I was twenty-six-years old. When a taxi met us at Orly Airport, our luggage would not fit in the trunk without tying it shut. The driver was not amused! Our gold metal Halliburton luggage was heavy without contents. I had packed a different outfit for each day. My GQ partner was not far behind. What were we thinking? One leg of our journey we took a train to Portmeirion, Wales, only to discover a 1.5 mile walk into the village while dragging pre-spinner luggage!

I have not given up airplane travel since my Parkinson’s diagnosis. From 2014 through 2017, I went on sixteen trips. It is possible to lightly pack a two-week trip to England in a 25” suitcase and happily lift it, if necessary! So how do I?

Select the right clothing

First, I go shopping in my closet to consider the 4-C’s

25″ Samsonite weighs around 8 pounds before packing

  • Color—black and blue, my travel favorite, hides spots
  • Content of Fabric—lightweight, rolls up small, does not wrinkle
  • Coordination—a few pieces create multiple looks
  • Comfort—appropriate for weather changes and activities

The final wardrobe selections are made several days before a trip. My rule is the item has to be worn at least twice, unless a special occasion.

eBag cubes save space and simplify packing

Two days before departure, I roll the clothing and place in three packing cubes in suitcase. I save suitcase space by wearing a jacket with the added bonus of being comfortable in airports and planes. Walking shoes are worn and provide stable sturdy support for my travel day. The departure outfit is repeated on the return trip.

Limit accessories and toiletries

I love these space saving eBag packing cubes

As for accessories, I simplify. The only jewelry I take is what I wear which includes a classic gold bracelet, two rings, watch, brooch, and pearl earrings. One infinity scarf adds punch. One pair of flat shoes and one pair of strappy sandals are allowed. Toiletries and basic make-up and skin care are packed in travel size containers. Yes, I can survive on one tube of lipstick, blush, sun screen moisturizer, mascara, and night skin cream. A rain slicker or denim jacket and umbrella are packed in an outside pocket.

Select the right tote bag and pack it lightly

My go to cross body Baggallini bags, super lightweight

Prior to PD, I traveled with a tote bag and a handbag. Now it’s one too many things to maneuver. A medium sized lightweight nylon cross body Baggallini tote bag, with a zipper closure and inside/outside pockets works best. I can easily access tip money, credit card, identification, and travel documents in outside pockets.

The inside contents of the tote include essentials: medicine, Parkinson’s ID card, collapsible cup, pen, pencil, spiral 5×7 notebook, paperback book, lip stick, lip balm, comb, tissues, insurance card, phone, charger, camera, and snacks. I keep a master list of items  for future trips. My hobo bag is packed in suitcase.

Antoine de Saint-Exupéry is quoted as “he who would travel happily must travel light.” It sure works for me.

Keep it light! Keep it simple! Keep on traveling!

Question: What are your packing tips for air travel? I’d love to hear from you.

Blessings,

Linda

There’s a Tortie in the House

My Tortie Maggie Mae

I love cats because I enjoy my home; and little by little, they become its visible soul. ~Jean Cocteau

Meet Maggie Mae, my tortie. She wandered into my secluded tropical backyard in February 2017 and never left. I brought her inside a few weeks later. Tortoiseshell cats may have patches of black, brown, chocolate, amber, red, cinnamon, cream, and blue ranging from splotches to specks.  Colors may be muted as shown by Maggie Mae. Aren’t those little cream spots on her toe adorable?

Cats do not often pose when you want to photograph them. I snapped this on my iPhone as I entered the guest bedroom. Maggie Mae  was stretched out on top of a wicker bed stand. She stayed perfectly still while I took five photos. The room has lots of natural light. I generally prefer simpler backgrounds. But the backdrop of pillows inspired the caption—There’s a Tortie in the House!

Photo Credit:  Linda A. Mohr

Brain Exercise and Parkinson’s

Did you exercise your brain today? What is something new you learned today? Up to 50% of people who have Parkinson’s disease will have some cognition change. Being slower in mental processing, having trouble multi-tasking and being forgetful are a few examples of this non-motor symptom.

Mark Mapstone, PhD of University of California Irvine spoke at the Davis Finney Victory Summit on August 10 on Cognitive Challenges –What to do About Them. He emphasized the value of mental activity as a brain fitness strategy.  When the brain is exercised, the rate of new neurons being created is accelerated. Additionally, the connection between neurons is strengthened. Leisure activity involving mental effort decreases the risk for dementia.

Brain Exercise

A good brain exercise depends on its novelty, variety, and challenge. According to Michael Merzenich PhD who has studied brain plasticity for over thirty years, the brain exercise we do must also be important, meaningful or interesting to us. Otherwise new neurons will not be created.

Dr. Mapstone advocates the idea of “learning something new every day.”  Some examples include:

  • New word
  • New concept
  • New exercise
  • New skill

As I reflected on Dr. Mapstone’s presentation, I was reminded that our creative pursuits are strong brain exercises. When we piece a quilt, write a sonnet, paint a watercolor, edit a photograph, write music lyrics, draft a chapter, or decorate a cake, we are creating new neurons.

When we study Parkinson’s, we learn new words. For example, bradyphrenia is slowed thinking. We add a new exercise move to our regular yoga workout. We learn about a new concept of slowing down the progress of PD through Rock Steady boxing in a support group. We go to a class and learn a new skill of boxing.

Here is a fun website: 40 amazing places to learn something new every day.

Examples of My Mental Activity

In June, I vacationed in Utah, Idaho and Montana. I was intrigued with huckleberry, but knew nothing about the state fruit of Idaho. I liked the sound of the name! (Probably due to me growing up an hour from Mark Twain’s Tom Sawyer- Huckleberry Finn country!) Everywhere I went I saw something huckleberry—candy bars, candy sticks, jam, cook books, soap, lotion and chap stick. I ate huckleberry pancakes and huckleberry ice cream at the Lake Yellowstone Hotel where I stayed. When I returned from vacation, I did a little research on this berry.

While sitting in the lobby at Lake Hotel, I observed two little boys playing pinochle. I use to play this card game with my father, but have long forgotten the rules. I decided I want to play this game again. There’s a day of learning. Dr. Mapstone mentioned playing cards as a great mental exercise.

This summer I read a couple of historical novels about the Underground Resistance Movement during World War II. That got me interested in doing some nonfiction reading on the topic. More learning!

I learn from my eBay customers, my girl friends at lunch and my Parkinson’s support group. I learned something new writing this cognition blog.

Let’s embrace mental activity as one of our brain exercise strategies today. Let’s be the 50% that does not have cognitive changes!

Question:  What have you learned today? What would you like to learn tomorrow? Next week?

Blessings!

Linda

Photo Credit for Focus:  Romain Vignes

Photo Credit for Huckleberry:  Linda Mohr

 

 

 

Elegant Egret by Karen Bryson

white egret, fence, tall grass

Elegant Egret by Karen Bryson

“When the creative impulse sweeps over you, grab it. You grab it and honor it and use it, because momentum is a rare gift.” ― Justina Chen, North of Beautiful

“I don’t normally do birds,” Karen Bryson reveals. That is until she saw a photograph her daughter-in-law’s mom had taken of an egret on the back deck of the Bay Port Inn. She knew she had to paint this beautiful Florida Nature Coast scene. The undertaking was quite a challenge as she was learning throughout. She admits to raising the bar a little on this one! The awesome result is a 22” by 28” acrylic that required “patience and lots of arm exercise.”

To visit Karen’s interview featured on this blog July 31 go to https://www.parkinsonsmyway.com/2018/07/creative-life-of-artist-with-parkinsons/

Visit her FB page to enjoy or commission art

Dear Parkinson’s Membership Chair

Dear Parkinson’s Membership Chair,

You have done it again!
You have recruited
another new member.
 
I did not intend to join this group.
Isn’t one million people in the United States
with Parkinson’s enough?
On May 13, 2014,
you officially notified me.
Not you exactly.
But I suspect
you were lurking in the neurologist’s office.
 
I want to inform you that I will not be an active member.
Take me off all distribution and call lists.
I do not want to be an officer or committee chair.
I do not want any newsletters, emails, or phone calls.
Do not waste your time on wearing me down.
 
I have a life to live in semi-retirement
and that is what I intend to do.
I will not be defined
by this chronic degenerative disease.
I will invest
in my care today and not
worry about tomorrow.
 
I will assemble my personal board of stellar advisers:
 
neurologist,
movement disorder specialist,
internist,
dermatologist,
urogynecologist,
chiropractor,
pharmacist,
physical therapist,
occupational therapist,
massage therapist,
speech therapist,
trainer,
nutritionist,
Tai Chi instructor,
yoga instructor, and
PD support group.
 
Together, we will heal my Parkinson’s disease day by day.
 
I will help other recruits.
I will be a beacon.
I will be grateful.
I will pray.
 
Living and loving life,

Linda A. Mohr

Photo Credit: David Travis

Paint Brush of Time

pastel stone, water

Paint Brush of Time

Its beautiful tints were beyond the reach of human art. ~ 19th Century Painter Thomas Moran

Grandiose, breathtaking, awe-inspiring! These words came to mind when I visited the Grand Canyon of the Yellowstone. I loved the juxtaposition of the Upper and Lower Falls and multi-colored stone walls. For thousands of years, the chemistry of the rocks has been altered, causing them to rust. The resulting palette is spectacular pastel colors of yellow, red, pink and white. I am grateful to be here for a mere instant to experience this geological natural painting.

Photo Credit:  Linda A. Mohr

Creative Life of Artist with Parkinson’s

palm trees, ocean, beach

Karen Bryson’s Painting on Wood with Left Hand

Woman smiling glasses

Karen Bryson

 

Karen Bryson discovered her talent for art when she was four years old. She loved to draw and color she recalls. “It took me to another place. Art always, and still is, my happy place.” She grew up in Erie, Pennsylvania. She and her husband raised three children in Upstate New York. Living on the Gulf Coast of Florida now, she is inspired by palm trees and beaches. Her three children and soon-to-be six grandchildren are occasional muses.

 

woman holding baby

Mother and Child Watercolor of daughter, Amy and granddaughter, Paige

She is also inspired by another unexpected force to continue to paint. When she was fifty-seven, she discovered she has Parkinson’s disease, a degenerative neurological disorder with no cure. “When I was first diagnosed, I thought about not being able to do art with my right hand which tremors. So I decided that day to start using my left hand.” Three years later Karen can paint with both hands. Although she still does fine detail work with her right hand when it cooperates, she is training her left hand to do fine detail as well. Still another proactive approach is learning to finger paint with both hands.

art studio desk art suppllies

Karen’s Studio–Her Happy Place, Her Safe Place

Because PD symptoms  often feel out of Karen’s control, art is still one thing that feels in her control. She describes her small studio in her house as “her happy place, her safe place.” One of her favorite paintings is a watercolor of her grandmother adorning her studio and making her feel good every time she looks at it.

She does not keep structured hours in her studio, just when the mood hits her. Since PD, the mood is often. “Having PD has been a blessing when it comes to my artwork. I don’t know why it’s happening, but my mind is filled with ideas. There has been a creativity explosion. I am driven to create. When I am in that zone, it’s hard to contain it. It’s hard to sit with hubby and watch television when I have ideas swirling around.”

bird cage, bottle

Flea Market Finds–Art Inspiration

 

One idea swirling around was to do something besides painting that incorporated using wire. As Pablo Picasso said, “The artist is a receptacle for emotions that come from all over the place: from the sky, from the earth, from a scrap of paper, from a passing shape, from a spider’s web.” Karen collects items from flea markets and yard sales that catch her eye and keeps them in her studio.

One day she was playing around with different pieces to see what would fit together. “When I placed the inverted wire cage on top of the glass bottle, ‘She’ popped into my mind. I have no other explanation. I had to determine how to secure all of it. I also wanted to use the framework for a  papier-mâché head, so that took more thought.”

Karen finds these kinds of little side projects quite fulfilling and great brain food. Her customers love them too.

ecccentric woman, wire hat with flowers blue bottle for body, wire frame glasses

Mrs. Doubtwire

Karen has a talent for connecting with others through her art. While motorcycling, Karen and her husband encountered by happenstance a man who had kayaked out to a remote island and spent the night. After sharing some photographs of the sunset he had taken from the island, Karen asked if she could use one as a reference for a painting. He later sent a photo, and she created a watercolor. In the meantime, she discovered he was a police officer with many years on the force. So she sent him the painting as her way to pay it forward in appreciation for his service. “The painting belonged on his wall, not mine.”

“The most awesome experience I can have as an artist is to see how my art touches someone’s heart,” she says. Recently she painted two dogs that perished in a tragic house fire. Their owner not only lost her two beloved pets, but she also lost her home and everything in it. After Karen heard her story, she asked for pictures of the dogs and the house. The owner also shared a picture of wispy rainbow clouds that appeared in the sky after the fire. The effect of Karen’s intuitive and compassionate work is illuminated by a family member’s comment. “You captured their eyes in this painting as Tuck and Bailey captured our hearts! Awesome talent!”

Two black dogs rainbow clouds house silhouette

King Tuck and Bailey

Parkinson’s and painting are inexplicably linked for Karen. But often her PD  is forced to the shadows. “The actual act of painting frees me from thinking about PD. I am able to get lost in my artwork and forget about even having Parkinson’s. It’s great therapy, so I make it part of my daily life,” she says. Enjoying Karen’s artwork is therapy for us as well! If you wish to see more of Karen Bryson’s art or commission work, please visit K Bryson Art As I See It on Facebook.

Winston Churchill said, “Never, never, never give up.”  Karen has embraced her challenge with purpose while helping others. This profile will end where it started with the leaning palm trees painted totally with her left hand. Karen sent this painting to a woman in Arkansas who is in advanced stage of PD  “to inspire her when she feels like giving up.”

Question:  Of the art featured in Karen Bryson’s profile, which one is your favorite and why?

Blessings!

Linda

 

 

Lacock English Cottage

Ivy covered stone cottage

Lacock English Cottage

If you see something that moves you, and then snap it, you keep a moment. ~  Linda McCartney

Lacock is a quintessential English village with charm galore. Streets are lined with ivy-covered stone cottages and timber-framed buildings. It has appeared in Downton Abbey, BBC’s Pride and Prejudice, and Harry Potter. I was fortunate to visit Lacock on a field trip while attending The 2017 Oxford Experience. Now I could live in this captivating little abode. Look at the blue and white jardinière in the window. My kind of place!

Photo Credit:  Linda A. Mohr

3-Year Timeline of Parkinson’s Signs

Life can only be understood backwards; but it must be lived forwards.
Soren Kierkegaard
Danish philosopher (1813 – 1855)

I embarked on a circuitous route for three years headed for an unknown destination. Only later would I understand a myriad of Parkinson’s signs.

What Does It All Mean?

March 2011

A four-hour drive to a book  fair left me struggling to get out of my car. I had driven the same car for five years and now I had to drag myself out of the car. I thought this challenge came with “aging” since I had recently turned 61.

November 2011

I was walking awkward. My gait was off. I used to walk fast. My long fluid strides were gone. It seemed like I had forgotten how to walk.

February 2012

I was at a weekly yoga class. I don’t recall what pose I was attempting on my right side. What I do remember is my teacher’s comment.
“I recommend you see a neurologist.”

March 2012

One morning a professor was running late. She asked me to write a note on the chalk board so students would wait. To my astonishment, I could not write big. Over two years, my handwriting got tinier and almost illegible. Joe had trouble reading my notes. I could barely read my own minuscule handwritten “To Do” lists. Still I was not alarmed. I thought my problem was right elbow tendonitis. Even a doctor thought so.

When it was time to prepare hand written Thanksgiving cards for the faculty, my graduate assistants wrote the message. I managed to sign 50 cards.

April 2012

While walking on the campus, a colleague on an adjacent sidewalk called out to me.
“What’s wrong with your arm?”
“What do you mean?”
“You are holding your right arm funny.”
I looked down and the arm was stiff and slightly curved across my stomach. That’s odd.
“Oh, nothing. It is fine.”

May 2012

I paid attention to my arms and noticed my right arm did not swing when I walked. It just hung at my side. I was perplexed. I watched people walk and arms moved. Even children moved their arms! My arm responded to my command:  swing that arm. However, I never had to talk to my arm before to get it to move.  I thought maybe I had suffered a mini stroke.

Summer 2013

Pain in my right elbow was unbearable. The year before I moved a piece of furniture and then aggravated the injury while carrying a heavy shopping bag. I also spent most working hours on the computer. I managed the pain with acupuncture and a steady diet of Aleve.  An orthopedic surgeon diagnosed tendonitis. A physical therapist administered treatments for several months. I eventually got better. In October, a can of cat food hit the top of my right foot causing a hairline fracture and pain that trumped the elbow pain!

January 2014

After my foot healed, a balance problem developed. I tipped backwards without warning. If I stooped down, I landed on the floor. I consulted an ear specialist certain he would find an inner ear issue or worse yet an acoustic neuroma. After various negative tests, a MRI also ruled out a brain tumor. I was advised to see a neurologist.

April 2014

I saw a nurse practitioner for an unrelated issue. A casual conversation led to mentioning my balance and walking challenges. With a serious look and tone she said, “You need to see a neurologist immediately.” The next morning she called with a referral.

May 13, 2014

I reached the destination of a long  three-year journey. In a simple  two-hour consultation that uncovered  Parkinson’s signs, the neurologist puzzled out diagnosis.

Question:  What were your Parkinson’s signs that led to diagnosis?

I would love to hear your story.

Blessings!

Linda

Photo Credit Jamie Street

Neurology Exam Reveals Parkinson’s Diagnosis

fountain, palm trees, flowers

In the midst of loss, there is beauty. A favorite site I photographed at The Breakers, Palm Beach.

Some statements I will remember the rest of my life because they changed my life. Like the hospital call about my boyfriend—Mr. Kraft has taken a turn for the worse. Like my veterinarian’s call—You have a very sick kitty. Like my sister’s call about mother—She’s gone. Like my neurologist’s diagnosis—You have Parkinson’s.

My first neurology exam

I was ninety minutes into a neurology consultation. It started with an electroencephalography (EEG) to check my brain wave activity. I rested on a bed for an hour while a technician gelled my hair and attached electrodes all over my scalp and connected leads to her computer. The diagnostic test was simple and painless. I had a blanket to snuggle under, and I even got to close my eyes most of the time.  I looked funny after the test because my hair was a gooey mess reminding me of too much Dippity Do. She mentioned the doctor always wondered what she’d create next. She gave me a comb to try to make it look better and assured me the gel would shampoo out. But I did not care. I wanted to see the doctor.

The Parkinson’s diagnosis

He watched me walk straight down a twenty-foot hallway, make a turn and walk back. Then we sat down in an exam room. He asked me many questions about my past health and family medical history. Did I have trouble sleeping or getting dressed? Had my handwriting gotten smaller? Had my sense of smell changed? Had I fallen in the past year? On and on! He typed on the computer keyboard as I talked. I drew a clock and placed hands and numbers around it. I performed some physical tests like standing up while he pulled me backward and forward by my shoulders. We played finger games as I responded to commands. I tapped my fingers together in a coordinated way as fast as I could. I moved my finger from the tip of my nose to the tip of his fingers. I gripped his hand.

Then the defining moment that came this time in a question—Has anyone in your family had Parkinson’s Disease? As I whispered, No, I felt like I had been punched in the solar plexus. The game changer question was suspended in the air for the last painless test. The electrodiagnostic test on my legs and ankles measured the electrical activity of muscles and nerves. When he completed it, all I remember are two words—Parkinson’s disease. He may have said, “You have the early symptoms of Parkinson’s disease.” Or “you have several symptoms of Parkinson’s disease.” Or simply, “You have Parkinson’s disease.”

How long can I live with Parkinson’s?

I was stunned speechless. I probably had a deer in the headlights dazed look! He explained that symptoms were different for each patient. I was glad he talked because I was incapable of putting two words together. Not everyone has tremors or shakes, I learned. I did not—at least not yet. He tried to reassure me that he had patients who had lived good quality lives for over two decades even though there is no cure for a Parkinson’s diagnosis.  As the consultation ended, I managed to ask what references he recommended that would not scare me. He suggested that Parkinson’s for Dummies was light reading.  I did not know if he was serious or not.  He gave me three weeks of sample pills to take daily with instructions to schedule another appointment. I left the office on a glorious sun drenched  South Florida day, Tuesday, May 13, 2014—my life going down an extraordinary path I would have never imagined.

Question: How did you find out your Parkinson’s diagnosis? I would love to hear from you.

Blessings!

Linda