Display the Quilt
Display the Parkinson’s Quilt in your community to show the impact of PD on your community.
Educate Yourself and Others
Thank you for participating in Parkinson's Awareness Month 2011. While April has come to a close, raising awareness can be done all year long. This is a great time to ensure the Parkinson's community has access to the latest disease-management tips, research news and coping strategies. Find out ways to educate yourself and your community!
Here are a few ways to do it:
- Awareness Profile
- Shatter the Myths of Parkinson's
- Plan an Educational and Awareness Raising Event
- Help to Ensure the Best Nursing Care for PD
- Get Creative
- Share Your Story
- Attend an Event
- Find a Support Group
Awareness Profiles
How can you help educate yourself and others about Parkinson’s disease? Here’s an example of how one man used his artistic talents to teach others about the impact of Parkinson’s.
Artist Brings Passion for Martinis and Music to Parkinson’s Quilt Project
Larry Schneider Jr. used his artistic gifts during April 2010 to contribute to PDF’s Parkinson’s Quilt Project — the first initiative of its kind to bring the world’s attention to Parkinson’s disease. Mr. Schneider, 40, has lived with PD since the age of 27. He has been an artist for his entire life, working in college as a free-hand illustrator and now as a computer graphic artist. He put his skills to use by creating two quilt panels. The first, entitled, “Park N Sons Martini Bar and Lounge (Always Shaken, Never Stirred),” is a light-hearted take on his PD. The second, a tribute to music, features an image of him playing bass guitar. He says, “Although Parkinson's has affected my life, I am still a husband, a father and an artist. I feel positive about anything I can do to help raise awareness about Parkinson’s.”
Shatter the Myths of Parkinson’s
Over the years, you have told us that the public needs to better understand Parkinson’s. Here are some real comments we received from people living with PD when we asked,
“What is the one thing that you wish the general public understood about Parkinson's?”
- Jan: Parkinson's doesn't just affect the person who has it, it is a trickle down into
the entire family affecting all whom love the one that is stricken by the disease. - Bev: That quality of life is affected so much
- William: It's not just tremor that takes us down, but rigidity as well.
- Denise: That PD is WAY more than a tremor!
- Bernie: How hard it is for people to understand the lack of facial and emotional expressions that are a part of Parkinson's.
- Dottie: I wish people understood the difficulty of research and the need to finance it.
Do you find yourself making similar remarks? Do your family members, friends and neighbors fail to understand the challenges — such as tremor, stiffness, or the variation of PD symptoms throughout the day — that come with Parkinson’s?
This year for Parkinson’s Awareness Month, let us “Shatter the Myths” about Parkinson’s with a photo and video campaign. We can work together raise awareness so that people better understand what life with Parkinson’s
is like and the need to fund a cure.
Tell your story by submitting a photo or video through PDF’s website. Please see details and regulations on March 1 to participate.
Plan an Educational and Awareness Raising Event
April is a great time to increase knowledge within the Parkinson’s community about the latest disease management tips, research news and coping strategies. Help by hosting an educational event, either with your support group and/or in a hospital or clinic.
Here are some ideas:
- Offer educational materials and link people with Parkinson’s and their families to local resources, such as your local Area Agency on Aging.
- Provide guest speakers — such as Parkinson’s doctors, people with Parkinson’s and nurses — to describe life with Parkinson’s. Try contacting your doctor, local university or a movement disorder center with PD specialists to find a speaker.
- Ask your entire group to gather together on Tuesday, April 12 at 1:00 PM ET for PDF’s online educational seminar, “What’s in the Parkinson’s Pipeline?”. Plan a discussion of the topic after the event for your members (see www.pdf.org/en/parkinsononline).
- Ask to include a Parkinson’s booth at a local health fair.
- Issue press releases and publicize your event in local papers, newsletters, on websites and through local media or schedule a press conference (See awareness tools).
- Add a creative element to your event! Display the Parkinson’s Quilt and distribute the Creativity and Parkinson’s calendar, which features the inspiring works of 13 people with PD who find artwork therapeutic for their PD symptoms (see www.pdf.org/en/creativity and www.pdf.org/quilt).
- Gear your event towards clinical research education and display materials from PDF and PDtrials, of which PDF is a leading member (www.PDtrials.org).
- Distribute Materials: Distribute Parkinson’s materials at your event. PDF offers materials free of charge (some are available in both English and Spanish). Order online, by calling (800) 457-6676 or emailing info@pdf.org.
Help to Ensure the Best Nursing Care for PD
As you know, nurses play a key role in providing quality care and ensuring that people with Parkinson’s have the best possible quality of life. Yet, many nurses have asked for better access to current treatment and core strategies to assist people with Parkinson’s disease and their families. A new free online course — Parkinson’s Disease Across the Lifespan: A Roadmap for Nurses — gives nurses the opportunity to learn the latest in Parkinson’s comprehensive care.
The course consists of four modules, each about one and a half hours in length, all led by Parkinson’s nurse specialists, physical therapists and people with PD. Nurses can watch the four modules and take brief exams following each one. The course is available online at http://support.pdf.org/nursing.
Over 4,000 nurses — from all 50 US states and 25 countries worldwide — have registered to take the course to date. How can you help to ensure the best nursing care for people with Parkinson’s?
If you are a:
- Nurse: View the free online course, Parkinson’s Disease Across the Lifespan: A Roadmap for Nurses and earn continuing education credits.
- Person living with or affected by Parkinson’s: Bring this article to your doctor’s office or local hospital and ask them to participate.
- Nursing Educator: Show the online course to your students and ask them to complete the online tests at home.
Get Creative
Do you want to share your Parkinson’s experience with the PD community? Get creative and share your story or a work of art, music or poetry with PDF through our Creativity and Parkinson’s Project! PDF’s Creativity and Parkinson’s Project is an initiative that seeks to explore, support and encourage the possible therapeutic value of creativity in Parkinson’s disease. Research has shown that creative activities — such as painting, singing, sculpting, dancing and even exercising — may temporarily ease symptoms associated with Parkinson’s.
More than 270 people have contributed their artwork to PDF … we invite you to join them! Start by browsing our gallery. Want to submit your own work? Email creativity@pdf.org or call (800) 457- 6676 for more information.
Share Your Story
Everyone's experience of living with Parkinson's is unique. Go online to check out ‘Sharing Stories,’ where people with Parkinson's share their stories about living with Parkinson's - about adjusting to diagnosis, dealing with employment issues, finding the activities (academic, artistic or athletic) that are therapeutic to their symptoms and/or outlook...and more.
Your story, too, could inspire others whose lives have been affected by PD. Share your story today at www.pdf.org/en/personal_stories!
Attend an Event
Not planning your own event? Attend someone else’s! Check out PDF's online event calendar for a listing of nationwide events, including local displays of the Parkinson's Quilt.
Find a Support Group
For many people, support groups provide a place, not just to share personal experiences, but to have access to the latest information about Parkinson’s.
To find one in your area, call PDF’s helpline at (800) 457-6676.
