Benefits of Top Parkinson’s Websites

In your thirst for knowledge, be sure to not drown in all the information. ~ Anthony J. D’Angelo

Introduction to Parkinson’s Web-Based Research

Researching Parkinson’s can be an overwhelming undertaking. If you have recently been diagnosed, questions abound! Where to start and who to trust can stop you before you get started. Maybe it is better not to know. The other extreme is to read anything and everything with the word “Parkinson’s” leading you down a confused and scary path. I recommend finding a balance and limiting the number of hours a day  you read about PD. You need to focus on bite size pieces in the  beginning. I also recommend you start with websites for foundation, association, and medical centers. Books, blogs, and specialty websites can be added later.

Since my 2014 diagnosis, the following foundation and medical organization websites are my “go-to” for trustworthy and accurate information. I strongly believe I must be my PD advocate and be educated on timely PD information. These sites are beneficial to me. The list is not in ranked order. Other excellent sites exist, but these are my favorites.

Linda A. Mohr’s Top Parkinson’s Websites for Foundations and Medical Centers

Northwest Parkinson’s Foundation

What I like about this site:
1. You can participate in online programs such as a weekly live streamed yoga class designed for people with Parkinson’s. It is led by Renee Le Verrier, RYT, a stroke survivor, certified yoga instructor, author, and person living with Parkinson’s.
2. Educational information is compiled and authored by Dr. Monique L. Giroux, MD, a board certified neurologist and the only physician in the United States fellowship trained in movement disorders and integrative medicine.
3. A Weekly Parkinson’s News Update is available by email.

Michael J. Fox Foundation

What I like about this site:
1. A live free webinar is held the third Thursday of each month. Prior webinars are archived.
2. You can subscribe to MJFF Parkinson’s Podcast for the latest in science and PD research.
3. You can use Fox Trial Finder and travel in your general area to participate in trial.
4. You can subscribe to Fox Focus on Parkinson’s, a print version available annually.
5. A tribute page can be created to honor lives touched by PD.
6. You can count on informative blog posts.
7. The site is chock-full of educational information.

Mayo Clinic Parkinson’s Homepage

What I like about this site:
1. Mayo Clinic in Minnesota has been ranked best neurology and neurosurgery in the nation for 2018-19 by U. S. News & World Report.
2. You can request a general interest e-newsletter, Housecall.
3. You can request a free trial of Mayo Clinic Health Letter.
4. The website has substantial educational information on PD.
5. Related links to Tai Chi and Mediterranean recipes are helpful.

University of Florida Health Center for Movement Disorders and Neurorestoration

What I like about this site:
1. Of international prominence, the mission of the University of Florida Health Center for Movement Disorders and Neurorestoration led by Dr. Michael Okun is “to provide the highest level of medical and surgical care to patients with Parkinson’s disease, tremor, dystonia and other movement disorders. To perform research that will lead to better treatments, and ultimately cures for Parkinson’s disease and other movement disorders.”
2. The Center sponsors a free public annual educational Parkinson’s symposium.
3. An integrative approach and interdisciplinary care is provided in one central location.
4. Appointment process is provided along with detailed information on medical staff.
5. The site has an excellent educational section relating to PD.
6. The Center is located less than five hours from me!

American Parkinson’s Disease Association

What I like about this site:
1. You will find a wide variety of information geared to people with PD as well as caregivers. Pamphlets are available for download.
2. Dr. Rebecca Gilbert writes “A Closer Look” blog.
3. Monthly Spotlight webinars are offered.
4. An educational video library is available.
5. If you would like to share your PD story from a PwPD, caregiver, or community perspective, there is an easy form to complete.
6. You can “Ask a Doctor” a question.
7. By entering your zip code, you can easily locate APDA resources and services in your area.  APDA sponsors such events as dance, boxing, exercise, caregiver support, socials, and lunch n learn where I live.

Davis Phinney Foundation

What I like about this site:
1. You can order the manual Every Victory Counts free and take control of your treatment today. (Incredible 382 pages resource! I refer to as my Bible of PD)
2. A free exercise video called Parkinson’s Exercise Essentials is offered as a download.
3. Videos are available for viewing including Ask the Parkinson’s Expert Series.
4. An interesting blog is written by different authors.

Do you have a favorite Parkinson’s website? Why is it your favorite? I’d love to hear from you.

Blessings!

Linda

Photo Credit: Kaitlyn Baker

Connections by Janice Rowan

Connections by Janice Rowan

Since you cannot do good to all, you are to pay special attention to those who, by the accidents of time, or place, or circumstances, are brought into closer connection with you. ~ Augustine of Hippo

I connected with Janice Rowan through a Parkinson’s Facebook group and knew I had to interview her.  Her unique expression of topics related and unrelated to Parkinson’s were inspiring to me. Her poems initially told her Parkinson’s story to help others. Her current poem, Connections, moves into universal aspects of life.

You can read more poetry by Janice Rowan at Arts and Such by PWP or Shakey Poet. 

Question:  Describe one person in your connections who exemplifies one line in Janice’s poem. I’d love to hear from you. Please post your comment.

Graphics and Poem Credit:  Janet Rowan

Parkinson’s Identification Card

I Am Not Intoxicated. I Have Parkinson’s Disease.

“No, I’m not intoxicated. I have Parkinson’s.” I have not had to convince anyone of this notion, but I have known of people who have. A Parkinson’s identification card can ease the situation and get help. If you see me wobbling, stumbling, or unable to stand, I am in a “wearing off” period before my next round of medication. Give me a pill and 30 minutes later, I will walk normal.

A Parkinson’s card template is available to download or print from a variety of organizations. Several valuable facts are commonly included.

  • Name
  • Address
  • Emergency Contacts
  • Doctor’s Contact
  • I have Parkinson’s statement
  • Symptoms
  • Medication

APDA Identification Card

The American Parkinson Disease Association offers a two-sided card. One side has basic  information for name, telephone, and emergency contact.

The reverse side includes the following: Please allow me time to communicate. Parkinson’s disease (PD) is a neurological movement disorder problem. I may slur my words, seem unsteady on my feet, or not be able to move at all. I am aware of what is going on. Please be patient with me.

The card template is available here.

Parkinson Foundation Identification Card

The National Parkinson Foundation card features a medical alert.

I have Parkinson’s disease which could make me move slowly and have difficulty standing or speaking. I am not intoxicated. Please call my family or physician for help.

Space is provided for name, emergency contact, and physician. This identification card has extensive information on medications that may be contraindicated in PD as well as considerations if the patient has a brain device.

The card template is available here.

Amazon Medical Alert Cards

Numerous examples are available on Amazon. The following economical two-sided card is printed on heavy card stock paper. Medical alert information can be entered on one side and emergency contacts provided on the other.

Parkinson’s Identification Card Tips

  • Print on card stock paper or laminate
  • Update changes as they occur
  • Carry in wallet
  • Check on card before travel
  • Replace if lost or illegible
  • Save these links for future reference

Thanks to Karen at K Bryson Art The Way I See It for asking for further ID card information after seeing the blog How to Travel Lightly with Parkinson’s.

Blessings!

Linda

Photo Credit: Louis Smit

Double Take

Free range egg sign

Double Take

I do not claim to have perfected an art but to have commenced one, the limits of which it is not possible at present exactly to ascertain. ~ Henry Fox Talbot

I like photographing signs. During a stroll through the quintessential English village of Lacock, this door display stopped me. Free eggs. Really?? Pirate things-what’s that? A closer inspection of the weathered sign fastened to a bright red box and framed by a plant revealed clever marketing.

FRESH FREE
RANGE EGGS
£1.20 per ½ dozen
Please put money through
Letter box Thank you!
Laid in Lacock!!

A pirate head eraser sits on top of a pencil. Assorted heads make up the collection for a 50 pence impulse purchase. Pirate erasers on pencils are sold on eBay and Amazon if you must have one for your next pirate theme party! Sure wish I still taught marketing! I’ll share this with a former colleague, Professor Jennifer McFarland! She will know what to do with it.

Later in the day I visited Lacock Abbey, the birthplace of photography. William Henry Fox Talbot who lived at Lacock Abbey captured the world’s first photographic negative in 1834. So thank you Mr. Talbot for making it possible for me to photograph a sign with many meanings right here in Lacock!

Photo Credit:  Linda A. Mohr

Creative Life of Poet with Parkinson’s

 

The Positive Trade-Off

Janice Rowan

Janice Rowan gave up her love of teaching preschool children due to the progression of Parkinson’s disease. She turned retirement from her 26-year passion to what she calls the positive trade-off—when one is prepared to work with and not against PD.

In 2009, she noticed her handwriting getting smaller, and she took longer to complete daily reports. Her right hand had a slight tremor. These symptoms led her to a neurologist and a Parkinson’s diagnosis. She continued to teach six more years before retiring in 2015 at age 62.

Janice needed to write children’s stories to fill the void and to heal the loss from giving up her beloved career prematurely. She found encouragement when she needed it the most. Ironically, her cheerleaders were living under her roof. Her two grandchildren, Victoria and Lucas, inspired her as she cared for them while their mum completed university studies. One of her first projects My Nana is a Mover and a Shaker was designed to explain Parkinson’s in a storytelling format to young children. It was released in an App Parkinson’s Xplained by Medicine X in Australia in 2016.

A Poet with Parkinson’s

Another front burner project after retiring was writing several children’s books in rhyming text aimed at 3 to 7-year-olds. The project was shelved for lack of a publisher, and Janice turned to writing poetry.

She believes that after she worked through the initial shock of getting PD, her creative drive was activated. Although she had created rhymes for the preschool children, it was not until her diagnosis that she discovered a need to write poetry. It was a coping therapy to deal with the diagnosis. “I had a new lease on life and creative purpose,” she says. “My first poems such as A Time to Grieve were raw with emotion. I was experiencing a lot of pain and trying to regain my composure and positive slant on life.”

First Shared PD Poem

As Janice decided how and when to reveal her secret, the outcome turned out to be one of her most amazing moments as a writer. “It felt like a great weight had been lifted from my shoulders,” she recalls. Eleanor Roosevelt said, “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.” She wrote her first poem about Parkinson’s with optimism and hope for the future and bravely posted it to a Facebook poetry group. All it took was one person hitting “like” for Parkinson’s Disease and Me giving her confidence to share  future poems with others.

Her poems continued to reflect good thoughts such as The Positive Aspect of Parkinson’s Disease. Other poems used the healing effect of humor as in Mr. Parkie. The My Parkinson’s Road Blockers addressed PD coping strategies such as gratitude.

One in a series of Parkinson’s Road Blockers

The Process

Janice prefers to write in simple rhyme that is expressive and descriptive of her personal Parkinson’s journey.  She usually adds a visual image reflective of the essence of the poem. Her hope is that by sharing her experiences and emotions, she will help someone else. You will often find her in this sunshine filled room in North Manly, Australia, working from her iPad. Her poetry  is spontaneous as she catches a thought, experience, or milestone to capture. She grew  up near Sydney and was the second eldest child of a family of eight children. With her husband, Peter of 44 years, their two daughters living away from home, and their son’s family living with them, Janice has many moments of grace to inspire her work.

Her Room for Inspiration in North Manley, Australia

Connections

As Janice  evolved as a poet, she discovered inspiration from other creative Parkinson’s people she met online. David Morse, a gifted photographer, encouraged her to keep writing poetry by placing some of her work on his sunrise images. This experience prompted Janice to explore the healing benefits of nature.

Next, David suggested she write quotes about life such as friendship, joy, and kindness. Her Live Life Quotes  have been placed on numerous photographs including those of her childhood friend, Karen Naughton.

Photo Credit: Karen Naughton…………Live Life Quote Credit: Janice Rowan

A Project Revisited

Some projects are not meant to stay on a shelf. According to William Faulkner, “If a story is in you, it is meant to come out.” In 2018, Karen helped to bring about the publication of the line of children’s books that Janice had written right after retirement. “Seeing my first children’s book published in print is one of my most amazing moments as a writer. This was an ongoing dream I had for a long time. It was on my bucket list,” says Janice. Her Understanding Parkinson’s books can be viewed on Blurb. Thousands of people will see them at the World Parkinson Congress in Kyoto in 2019, as the books were selected to be in the Book Nook!

Janice Rowan’s Children’s Series Bound for Book Nook World Parkinson Congress Kyoto 2019

Janice’s PD Blessing

Janice is busy with new  projects. A friend is illustrating a children’s book about a koala which she plans to self-publish. Two other books on fairy gardens and on a child overcoming fear are being edited. She is thinking about publishing a small book of poems. Her creative works including the past, the present, and the future provide temporary respite from Parkinson’s symptoms. The dichotomy is Janice does not believe she would be doing stories, poems, and quotes today if Parkinson’s had not come calling. “PD makes me more determined and motivated to create a sense of positive purpose with my artistic endeavors and to share these with others,” she states.

Her last stanza of A Burst of Creativity beautifully expresses the need to create.

Ones’s creative journey develops courage to take risks and to overcome fear
By exploring new ways to develop self expression in all that the heart holds dear
So the act of doing what one totally loves and is passionate about during day or night
Offers respite from Parkinson’s to improve quality of life as the creative spirit takes flight!

The blessing for Janice is a never ending circle of motivation followed by feel good therapy fueled by her creative achievements. She exemplifies how it is possible to feel more in control of Parkinson’s and to live life with purpose.

Keep InTouch

If you would like to read more of Janice’s poetry, you can find new poems in Facebook groups such as Shaky Poet, Parkinson’s Writers Group and Art and Such by PWPS. Older poems can be found on Parkinson’s Poems and Other Writings. Visit Blurb to see her line of children’s books or better yet come to Kyoto and see them firsthand. You may even meet Janice!

Question:  Of the creative works featured in Janice Rowan’s profile, which one is your favorite and why?

Blessings!

Linda

 

 

 

Peacefulness

mountain, lake, pine trees

Peacefulness

I wish that all of nature’s magnificence, the emotions of the land, the living energy of the place could be photographed. ~ Annie Leibovitz

I could spend the rest of my life at Yellowstone National Park and never capture every magnificent scene. But It sure would be fun trying! Joe and I vacationed there in June for the first time. We were captivated to say the least. This is one of the many scenes when I called out, “Stop here, stop here!” I am glad he did!!

Photo Credit:  Linda A. Mohr

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