Sep 10

How to Sneak Exercise into a Parkinson’s Day

 

What seems impossible today will one day become your warm up.

I got delayed in a post office line recently. The customer ahead of me was mailing a package to Italy with address issues. Within seconds, I knew the transaction was going to be time-consuming. But I needed to stay to mail an eBay order. As the minutes ticked by, frustrated customers dropped out of line. Others were on their phones or muttering to themselves. I was exercising!

My Light Bulb Moment

My “light bulb moment” as I waited for my turn was a result of what I do while brushing my teeth. I stand on one leg and alternate to the other as I brush. My electric tooth brush stutters after two minutes. I can anticipate when I near the one minute mark and switch legs. Or reach for the goal of standing on one leg for two minutes. (Which by the way I can do without support!) The vanity provides stability if I ever need to lean on it. Single leg balance exercise has improved my posture and increased my leg strength.

So as I was frozen in the post office line, I thought, why not stand on one leg? I have a bar along the waiting line where customers place packages. If necessary, I can lean against it and stay safe. The seventeen minutes before my service turn passed calmly. I returned home feeling clever!

Exercise is Parkinson’s Medication

I understand the importance of exercise. In fact exercise is a medication for Parkinson’s. Evidence-based research shows exercise can slow the progression of the disease. But I do not always get enough exercise.  Doing single leg balance routines is a sneaky way to work exercise into my daily activities. By doing so,  I am also multi-tasking which is good exercise for the neuroplasticity of the brain.

Exercising while waiting can be coupled with a variety of daily activities. Since it is  fun and a change of pace, I am more apt to do it. I have balanced on single leg in a cashier line when I have a cart for support. It works in the kitchen when I have counter support while I am waiting for tea to brew. Brushing my hair, hugging Joe…..you get the picture! Just be creative and you will discover opportunities in your daily life.

A shopping cart provides support if I wobble.

Easy-Peasy. Let’s go for 2 1/2 minutes!

If you are new to this type of exercise, I recommend you consult a physical therapist. Go slowly and be safe. Always have a chair or counter or some form of support that you can lean on or touch with a finger if needed. I recommend viewing this excellent less than one minute video on how to do the single leg balance.

Most people do not notice what I am doing. But when someone asks, I simply say, ”This is one way I maintain balance, improve posture and keep from falling.”

Question to Ponder:  How do you motivate yourself to exercise?  I would love to hear your tips in the comment section.

Blessings!
Linda

 

Aug 22

Sue Edge Finds Happy Place is Creativity

I don’t have a choice that I have Parkinson’s, but I do have a choice what I do with it. I want to go forward to my Happy Place. ~Sue Edge

 

Multi-Talented Sue Edge…Artist, Poet, Producer, Entrepreneur

Sue was diagnosed with PD in 2010 and was forced to retire for medical reasons in 2015. She had worked the previous thirty-seven years as a teacher in Western Australia including Halls Creek, Central Desert, Pinjarra, Carcoola and Mandurah. Sue spent the first six months after retirement feeling lost, but trying to find a purpose. Her first creative efforts were fairy houses and wind and sun catchers. However, Parkinson’s affected her fine motor skills, and she found the small detail work impossible to execute. So Sue’s search for her Happy Place resumed.

Color Her World

Although she had never been able to draw or paint, she loved color. Inspired by her childhood nickname Big Bird and Lucky Legs, she began painting birds. She discovered that her quirky emus with their big personalities made people smile and made her happy.

Smile and Be Happy

Poetry in the Wee Hours

Besides painting, Sue was especially prolific for four months in 2017 when she wrote poetry in the middle of the night. She found that she had to get up and write the poem down before going back to sleep. To Sue’s amazement, she is better able express on paper what is in her head since having PD. She is now in the process of editing her collection and hopes to self-publish by the end of this year. Sue wrote the following poem in January 2017 which appears on her blog.

Awake Again!

Awake again at stupid o’clock
Wishing that I had a huge, sharp rock
To fling at that Parkinson’s annoying head
So I could sleep peacefully once more in my bed.
Wishing that I could be free once more,
To do things without them being a chore.
To be free from this ever present pain
And be able to do everything normally again.
To not be scared of freezing at inappropriate times
And be going back to work Instead of making up rhymes.
But wait…..what’s this I hear?
That ‘think positive’ bug is in my ear
Telling me to look for the good
And not go moping all over the neighbourhood.
So I’ll haul myself out of bed
And go pedal on my exercise bike instead.
Singing along with The Beatles, a bit out of key
But showing the world it’s good to be me!

PD is a family affair in the Edge household. Her children Josh and Tash are supportive. Sue has also written a children’s book based on her two granddaughters’ viewpoints. Her grandson wanted to be involved as well. So he named her book Our BobbleHead Nanna. She also hopes this book will be published. In the meantime, her younger granddaughter is helping her to make it into a video for an upcoming Parkinson’s convention.

Parkinson’s Philosophy

Sue’s philosophy is “PD does not change the fact I have a life. It changes the way I do things. Dream, believe, adapt and achieve. Adaptation is key.” For example, when she struggled with the repetitive motion of putting dots on the bird paintings, she adapted. When she played music with a distinctive beat, she successfully painted the dots.

Painting to the Beat

If her hand does not want to hold a paint brush when she is ready to do a background, she simply puts the paint on her hand and paints. Michael J. Fox would agree that Sue has found “a way through it.”  “You can be creative with PD,” Sue acknowledges. “There are days when I am painting that I am at peace. I can go longer between off periods. Painting takes me to my Happy Place and sometimes I feel normal and without symptoms.”

Exhibition Leads to New Venture

Sue’s artwork has appeared at two exhibitions held at the Niche, the headquarters of Parkinson’s Western Australia. She sold fifty-eight pieces and donated 20% of the sales to the PD Nurses Programme. Her goodwill caught the attention of an organizer of an art competition, and she was asked to enter.

Emus–Part of Sue’s exhibit at the Niche

Paintings Become Wearable Art

After winning $100 voucher to a framing shop, she discovered they made coasters from photos. Sue purchased coasters featuring her favorite paintings to give as gifts. But people wanted to buy them! One resource led to another and since coasters, she has designed leggings, yoga pants and tote bags. Her best sellers are coasters, scarves and shopping bags. She covers her costs, donates some proceeds to the PD Walk in the Park fundraiser for PD WA and then buys new stock with profits.

One of Her Favorite Emu Paintings is a Best Seller

The Art of Production and the Power of Goals

Influenced by her education career, Sue wanted to produce the rave review Kinetics play at Fishtrap Theatre in the Mandurah Performing  Arts Centre to raise PD awareness. Kinetics, written by actress  Sue Wylie of the United Kingdom, is based on her true story of coming to terms with her unexpected diagnosis of Parkinson’s at the age of 50 and her friendship with Lukas, a teenage boy struggling with his diagnosis of ADHD and who is into Parkour.

Sue’s friends helped build the set, and the leading lady was an ex-colleague. Grants flowed in from several organizations. Rehearsal started in February of 2019, with the opening in May. Ninety-nine people attended the first night, surpassing the projected thirty to forty! The reaction was fantastic with a total of 264 patrons attending the remaining four productions. Once again Sue  proves it is possible to live with purpose while battling Parkinson’s.

The Unsteady Hand

Her latest project is working with Mo Onstad’s “The Unsteady Hand” model based in Colorado Springs. She offered the first creative workshop in Australia on August 1 for people with PD based on “re-imagining Parkinson’s and promoting improved quality of life for those living with Parkinson’s through communal creative engage.”

Workshop modeled after The Unsteady Hand

It is unimaginable what the multi-talented Sue Edge will do next! What a pleasure interviewing her on Parkinson’s My Way.

Keeping in Touch

To learn more about Sue and her creations, go to

Facebook
Video
Art on Merchandise
You can also email Sue at [email protected]

Question: Do you have a hobby or activity where you lose all sense of time when engaged in it? You are calm and peaceful and for a time you forget all about Parkinson’s. Please comment.

Blessings!
Linda

Aug 14

Aware in Care Parkinson’s Hospital Kit

I need my Parkinson’s medications ON TIME, EVERY TIME

According to the Parkinson’s Foundation, people with Parkinson’s disease (PD) are admitted to the hospital 50% more than their peers. Three out of four hospital patients with PD do not receive their medication on time. Therefore, they have a one in four chance of complications because of medication errors. The Parkinson’s Foundation launched the Aware in Care campaign in 2011 to help people with PD get the best care possible during a hospital stay.

I attended a Parkinson’s Foundation educational event in May and saw the Aware in Care Kit. One kit per PD patient is complimentary. My kit arrived recently. I hope I never need to use the kit. However, by being proactive and preparing the contents in the kit, my odds of getting the right care at the right time are increased.

Preparing Aware in Care Kit

Kit Contents

Medication Form:  List all your prescriptions and over-the counter medications for PD as well as any other medical conditions. Make five copies of the medication form and place the original and copies in the kit. Update the form whenever medication changes.

Medical Alert Card: Fill in the back of the card and place in wallet. This card includes important information for healthcare professionals including a list of medications that are not safe for PD patients.

Fact Sheet for Nurses: Place the fact sheet tablet in kit.

Precautions for Duopa or Deep Brain Stimulation: If you have a DBS device or use Duopa therapy, place the information card in kit.

Emergency Contacts:  Make a list of names, phone numbers, emails and addresses of your neurologist, movement disorder specialist, primary care physician, care partner and close family members. Place a copy in kit. Update as changes occur.

Health Care Proxy:  Work with an attorney to create a Health Care Proxy that complies with your state guidelines. This document identifies who is authorized to make medical decisions for you if you become incapacitated and unable to express yourself. Place a copy in kit.

Parkinson’s Medications: Keep an extra supply of all your current medications in their original bottles with your name and dosage on each label. A 48-hour supply is recommended. Place in kit. This step gives you peace of mind that you have everything you need if you have a medical emergency and have to grab the bag and go.

Parkinson’s ID Bracelet:  A stainless steel, hypoallergenic and waterproof  bracelet is in kit for you to wear. It alerts medical professionals  that you have PD and includes a Parkinson’s Foundation Helpline number.

After your kit is assembled, show the contents to your care partner as well as where kit is stored.

How to Get Kit

For more information or to order your complimentary kit, click here.

Blessings!
Linda

 

Aug 08

Country Living Blessings

The inspiration for this poem is my beloved family homestead in Missouri.  I can see,  hear, and smell these sensory delights as I walk the land. I just returned from vacationing there for three weeks. Oh, the healing power of nature!

Country Living Blessings

Swaying amber wheat,
Expansive spaces,
Fresh cut red clover—
Balm for my soul.

Tasseled corn maze,
Queen Anne’s lace,
Rolling green pasture—
Soothing silence.

Meandering creek path,
Purple lilac tree perfume,
Sweet pea tendrils—
Peaceful nature.

Frolicking ginger kitty,
Colorful pegged clothes,
Night creatures’ serenade—
Joyous pleasures.

Bobwhite bobwhite,
Cicada songs,
Whip-poor-will calls—
Spiritual symphony.

Twinkling fireflies,
Illuminating moon beams,
Majestic maple trees—
My Maker’s handiwork.

 

Photo and Poem By Linda A. Mohr 

Country Living Blessings first appeared in Spirit, Peace and Joy, an anthology of poems published by Pen Women in 2013