Sep 11

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

Sep 06

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

Sep 04

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

Aug 30

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