Archive for the "NPFM News" Category

Online auction, public television premiere, special donors and more highlight Parkinson’s Awareness Month activities; You’re invited!

Parkinson’s awareness month is the perfect time to help friends, family, neighbors, work colleagues and others learn more about what it takes to live well with Parkinson’s disease.  And NPFM is here to help. 

Living with Parkinson’s premieres April 22 at the Galleria Edina. People with Parkinson’s and their families, health care providers, volunteers and others are featured throughout this 26-minute video produced by NPFM in cooperation with Twin Cities Public Television and the Capistrant Parkinson’s Foundation.  The premiere is 5 to 7 p.m. at Barnes and Noble located at the east end of the Galleria Edina. Refreshments will be served. Invite your friends and family to join you for this special evening. RSVP to help us plan accordingly. TPT describes the documentary-style video saying that although the phrase “you have Parkinson’s” is difficult to hear, “for many Minnesotans, this diagnosis leads to a new stage of life with valued relationships and personal growth.”

Following the premiere, author Susan Gangsei will be signing her new book, Stuck with it, Not in It…Redefining Life with Parkinson’s Disease. The book features stories of hope from people throughout the Parkinson’s community. This is Gangsei’s second book. Her first, The Light in the Middle of the Tunnel, features personal stories about Gangsei’s experiences as a care partner.

Parkinson’s Awareness Month is also the time of year when NPFM celebrates the Parkinson’s community and thanks those who do whatever it takes to beat Parkinson’s.  We started the month at the City of Minneapolis City Council meeting where the Council read a resolution proclaiming April as Parkinson’s Awareness Month.  The resolution was followed by our annual Evening Out for Parkinson’s West, an evening of good food, music, a silent auction and medical update. Once again people with Parkinson’s, family and friends didn’t let a Minnesota snow storm stop them from enjoying a beautiful evening.

KARE11’s Dave Schwartz is taking advantage of Parkinson’s Awareness Month to raise awareness and funds for NPFM with Buy Dave’s Ties. Schwartz and his family have been personally affected by Parkinson’s and in honor of his grandmother, Sylvia, he will be wearing a new Hammer-Made silk tie during every weekend broadcast through April 19. Each tie is being auctioned off on eBay and NPFM receives all proceeds.  Follow the auction on the NPFM Facebook page or search Buy Dave’s Ties on eBay. And thank you to Hammer Made for donating the gorgeous ties again this year.

Next week, April 15 to be exact, the 35W St. Anthony Falls Bridge will glow blue in honor of Parkinson’s Awareness Month. You’ll see three shades of NPF blue and Medtronic’s blue on the bridge.  NPFM is excited to have our partner Medtronic as part of this event. While bridge is shining, NPFM is celebrating its Top Parkinson’s Philanthropists. These regular, yet very special people will be highlighted in our social media telling their own story about why they raise money for Parkinson’s and why they chose to give to NPFM. Their stories are your stories.  We believe they will help make communities more Parkinson-friendly.  Again, watch our Facebook page for details.

And finally, we end our awareness month activities with our biggest fund raising and fun-filled event of the year, Moving Day Twin Cities, our annual walk for Parkinson’s. Find out more here, register your team and join us May 3 at beautiful Hilde Park in Plymouth.

NPFM staff and volunteers have been working to celebrate Parkinson’s Awareness Month and take advantage of the opportunity to draw attention to Parkinson’s. What do you do to help create more awareness about Parkinson’s in our communities? Please share your ideas.

-Eileen Smith

NPFM Board President

 

Parkinson’s and DBS: Fargo hosts seminar

Our friends in the Parkinson’s-Friendly Community of Fargo, N.D., recently hosted a seminar for local residents to learn more about the Deep Brain Stimulation procedure and how it may help some people with Parkinson’s. Here’s the seminar in three components:

Presentation Part 1

Presentation Part 2

Presentation Part 3

Register now for Fargo-Moorhead Parkinson’s and DBS seminar

Refuse to Surrender to the symptoms of Parkinson’s disease is a seminar co-sponsored sponsored by Medtronic, Tanya Harlow, M.D., movement disorders neurologist, and Adam W. Jackson, M.D., Ph.D, neurosurgeon, with Sanford Brain & Spine Center, Sanford Health, Fargo.

This free seminar is for people with Parkinson’s disease and their care partneres.
It will help you understand:

  • Medtronic DBS Therapy, an FDA-approved treatment for the symptoms of advanced Parkinson’s disease
  • Risks and benefits of Medtronic DBS Therapy

Registration begins at 5:30 p.m., followed by the program at 6 p.m. Although the seminar is free, we’d like to know you are coming. RSVP to info@parkinsonmn.org or call 763-545-1272.

For more information on DBS Therapy, visit www.refusetosurrender.com. For complete safety information about Medtronic DBS Therapy, visit Medtronicdbs.com.

Living well with Parkinson’s near Willmar — we can help

NPFM is thrilled to share with you the launch of the Parkinson’s Path. It’s the brainchild of staff and participants at Bethesda’s Wellness Center and therapy programs in Willmawillmarpathwayr.

This story in the West Central Tribune says it all. The Path is a way to help people with Parkinson’s and others navigate changes in their daily lives. People in the therapy program practice walking from concrete onto pavers or from pavers onto grass. While more activities will be added next year, current participants go up and down hills, get in and out of lawn chairs and figure out the safest way to fill the bird feeder. Practice in therapy so it’s safe to do it at home. Brilliant idea.

The Wellness Center is designed to meet the needs of area residents who are 50 and older. Classes include spin bike classes in the accessible pool, water areogics and more.

NPFM’s support of the work in Willmar is part of our Parkinson’s-Friendly Community effort through the support of the Otto Bremer Foundation.

-Eileen Smith, NPFM

God bless all of you and your Organization for your generosity

I just wanted to extend a heartfelt thank you to the MN Parkinson’s Foundation on behalf of my mother. As I had previously mentioned, my step dad has Parkinson’s Disease, and it is advanced enough that he needs round the clock care.

Recently, the doctor’s discovered a tumor in my mom’s neck and were leaning towards surgery (the Lord blessed us and they cancelled her surgery on the grounds it was unnecessary on the morning of the operation. Praise the Lord for second opinions and doctors working hard to be very thorough J). Needless to say, my mom and all of us had NUMEROUS things to worry about when they told us she needed surgery.

But one thing she didn’t need to worry about was how to pay for care for my stepdad if she had to be in the hospital for several days. Mom had been generously given a $500 grant from your Organization. That $500 was more than enough to provide my stepdad Stan care in an in-patient facility for several days. That was one less worry for everyone, and I can’t tell you how much having one less worry meant to my mom and to the rest of us.

When they called the morning of the surgery to tell her it was cancelled, she still left Stan in the care facility for a couple days and got some much needed rest and relaxation from being an around-the-clock caregiver and from being terrified when she found out she has a tumor in her neck. Now, you may think that the $500 that your Organization offers is only money. Let me set the record straight…. That $500 was peace of mind in a crisis….. that $500 was a chance for a very dedicated care giver to take a breath and to relax for a couple days after a scary situation…. That $500 meant ONE LESS THING TO WORRY ABOUT….. Parkinson’s caregivers have a lot on their plate and a lot to worry about….. That $500 was a God send to our family.

God bless all of you and your Organization for your generosity.

Diane Simpson

 

For more information on our Respite Care for Caregivers program please click here.

NPF Webinar Schedule

Our series of free webinars addressing topics important to the Parkinson’s disease community continues this fall, with the next one taking place next week. Featuring presenters that are experts in their field, these webinars offer practical advice for living well with Parkinson’s.

Thurs., Aug. 15: Getting the Most from Your Doctor’s Visit. Presented by Fernando L. Pagan, Assoc. Professor of Neurology, Director of Movement Disorders Program, Medical Director of Georgetown University Hospital, an NPF Center of Excellence

The Support Group Leader Discussion Guide is attached to this email.  For more information on these and other webinars, please visit Parkinson.org/webinars.

Dr. Okun on Statin Usage

Dr. Okun on Statin Usage

HealthDay recently published an article on WebMD discussing the effects of statin usage on the risk for Parkinson.  Dr. Okun was quoted in the article:

Dr. Michael Okun, national medical director of the National Parkinson Foundation in Miami, said the findings were “intriguing but not surprising” in light of recent interest in lipid-lowering drugs to reduce Parkinson’s risk. But Okun said caution should be exercised in interpreting the study’s results.

“In general, these types of population studies should not be used to make large-scale changes in the practice of medicine because they are prone to error,” said Okun, also author of Parkinson’s Treatment: 10 Secrets to a Happier Life.

You may read the entire article here.

Throw out a first pitch, sing Take Me Out to the Ballgame

Parkinson’s Day at the Ballpark is almost here and this year we will have more fun than ever before. Tickets remain for the Aug. 18 event at Target Field. Join the fun by purchasing your ticket here.

One lucky NPFM ticket holder will be invited to go onto the field before the game and throw a first pitch. New this year is the chance to sing the chorus of Take Me Out To The Ballgame during the 7th inning stretch. No experience necessary and everyone is our group is invited to join in the fun.

NPFM’s version of BINGO™ will be back, along with fabulous prizes and Parkinson’s information for attendees. A big thank you to Parkinson’s disease medicine partners UCB and USWorld Meds for sponsoring this fun day for the Parkinson’s community and allowing NPFM to sell tickets at discount.

Don’t let the Twins less-than-fabulous season keep you away from beautiful Target Field and enjoying a Sunday afternoon with your NPFM friends. We have wheelchair accessible seats, and the Twins have wheelchairs and staff members to help guests get from the curbside drop off to NPFM’s seats. If you would like more details on getting around Target Field, please contact and we’d be happy to help. For planning purposes for those who are not dropped off curbside, our tickets are closest to Gate 6 although you may enter at any gate. Gate 6 is also where the light rail train drops off riders.

Please join us in generating Parkinson’s awareness and enjoying a Sunday afternoon of fun with a great Minnesota charity. Once again, here are the details:

Sunday, Aug. 18

Gametime: 1:10 p.m.

Versus the Chicago White Sox

Our seats are in the Skyline Deck, near the Legends Club with a beautiful view of downtown Minneapolis.

First 5,000 fans under at 14 receive a Twins back-to-school pencil case.

National Parkinson Foundation launches free app for Parkinson’s patients

MIAMI– The National Parkinson Foundation (NPF) launched Parkinson’s Central, on Wednesday. Parkinson’s Central is  a free app specifically created for people living with Parkinson’s disease and their families. This is the only comprehensive app for people living with Parkinson’s.

The Parkinson’s Central app is now available on iPhone and Android smartphones.

Research has shown that the way that patients learn about Parkinson’s is critical to their quality of life with the disease and also that people rarely can process or remember all the information given to them when they see their doctors.

“NPF is dedicated to developing new concepts and technologies that engage people in their own care,” said Joyce Oberdorf, NPF’s President and CEO. “Parkinson’s Central is a simple yet powerful tool that we believe will positively impact the health of people with Parkinson’s, wherever they live.”

NPF’s Parkinson’s Central app features:

  • How to get the most out of your doctor visits
  • Ins and outs of diagnosis and medication management
  • Advice on how to live well with the disease
  • Information on insurance and financial matters
  • Tailored content for caregivers
  • “Near Me” tool to find local resources according to zip code

“Easy to use and easy to read, Parkinson’s Central is a veritable encyclopedia of Parkinson’s issues, not only regarding the treatment of the disease, but as a guidebook for positive and high-quality living with Parkinson’s,” said James Morgan, who was diagnosed with Parkinson’s disease five years ago. “The ‘Near Me’ feature is a powerful tool to connect people with valuable resources in the Parkinson’s community.”

Parkinson’s Central was developed as part of NPF’s overall vision to use innovation and technology to meet an ever-increasing demand for online health information and to help people with Parkinson’s now. This is the second free app that NPF has released; the Parkinson’s Toolkit, which launched in 2011, is an app designed for health care professionals.

The Parkinson’s Central app is free, and is available in the iTunes App Store and in the Android Market.  Detailed information on the app is available at www.parkinson.org/parkinsonscentral.

One of our own featured on MJFF

Our own Jackie Hunt Christensen has been featured on the MJFF blogRead the blog post  below or check out the link.

_Parkinsons_RotaterBanner-JackieHow has Parkinson’s affected your relationships?

That’s the question Jackie Hunt Christensen wants to ask you—whether you have Parkinson’s, love someone who does, or treat those with the disease.

Living in Minneapolis with her husband and their two sons, Jackie is the state director for the Parkinson’s Action Network in Minnesota and vice president of the National Parkinson Foundation Minnesota. More than 15 years ago, she was diagnosed with young-onset Parkinson’s, but continued working as an environmental health activist. After she turned 40, she decided to focus more on her own health and family, channeling her passion for activism into the Parkinson’s community. Her first effort to raise awareness about PD was to host a house party for Michael J. Fox’s final episode of “Spin City” in 2002. Since then, she has published two books about living with Parkinson’s—a guide for the newly diagnosed and for those who undergo Deep Brain Stimulation (DBS) surgery.

In anticipation of this October’s World Parkinson Congress (WPC), Jackie developed a survey about the impact of Parkinson’s on relationships and interpersonal communications. From this survey, she will use the data to create a poster to present at the WPC. And she needs your help. She says, “I’ve been thrilled by the number of responses I’ve already received. But I hope to get even more, so I can represent as many experiences as possible.”

Jackie hopes to inspire more discussion around Parkinson’s non-motor symptoms, such as facial masking and issues with speech. She says, “I was first made aware of these symptoms about 18 months after my diagnosis, when my husband asked, ‘Are you mad about something?’ I said, ‘No, why do you ask?’ And he said it’s because I look mad all the time. It wasn’t until I talked to my doctor that I realized this was a common symptom of Parkinson’s.”

After Jackie had DBS, she regained some of her facial expressions. However, her voice remains weak. To help her address this, she asks her family to tell her when they can’t hear her. She jokes, “My younger son is a teenager now. So I have to differentiate when he doesn’t respond to me—is it because he actually can’t hear me, or because he’s simply ignoring me like a teenager?”

Although DBS has significantly improved her quality of life, Jackie worries that some people may initially find her unapproachable, due to her facial masking or “flat” voice. And she is often frustrated by people’s reaction to her halting speech. “They tend to complete my sentences for me. And I hate that.” As a Parkinson’s advocate, she says she sees too many people speaking on behalf of patients, rather than allowing patients to speak for themselves. “That makes living with the disease even more isolating,” she says.

Through her survey and presentation at the WPC, Jackie hopes to help combat this. In particular, she hopes the information she gathers will prompt researchers to look more closely at these lesser known symptoms, which can have a tremendous impact on the lives of patients—and their loved ones.

Share your experiences by taking part in this survey.

 

 

 

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