TPT’s Living With Parkinson’s: view entire video or segments online

If you missed the television premiere Sunday of Living With Parkinson’s on TPT, watch the entire show online. Choose to view the entire 26-minute video, or any one or all of these segments:

  • What is Parkinson’s?
  • Potential Causes
  • Symptoms and Diagnosis
  • Reaction to “The News”
  • Mental Health
  • The “Mask”
  • Exercise is Essential
  • Financial Challenges
  • Providing Care
  • Learning of Adversity

In addition, you may catch the rebroadcast Sunday, May 4, at 2 a.m., 10 a.m. and 2 p.m. on TPT-MN. It will also be broadcast 12:30 p.m., May 4, on TPT Life.

NPFM produced this documentary-like video with TPT to tell the stories of people living with Parkinson’s. We know that by sharing our stories chances are we will help others with Parkinson’s live well.

We welcome your questions and comments. NPFM is here to help. Would you like someone to share your with your group? Do you or someone you know need a break from caring for a loved one with the disease? Do you want to be the first to know about our upcoming help at home or exercise grants? Feel free to end an email to or call 763-545-1272.

Below is where you may find TPT in your area.


Dish DirecTv around MN etc



Annual Walk is more than just a walk for the Austins

My father was diagnosed with Parkinson’s 10 years ago. He was 54. The disease has had an impact on our entire family.

Nine years ago we participated in our first Parkinson’s walk. After five years of walking, we knew we could do more.

With the support of family and friends we organized a silent auction fundraiser. The owner of our local restaurant, The Station, is very helpful and offers us a great price on the buffet we offer as part of the event.

Many local businesses have responded to our donation requests over the years and friends and family add baskets to the mix. Each year we make more money than the year before.  A highlight this year was the addition of a live auction that went over very well. We also had a bowling benefit at the local bowling alley.

Kids are also part of the event. We have a PLINKO- type game with gifts donated by a friend with connections with the movie industry.

In the past we have had entertainment at the auction and a party bus with games and stopovers at local bars. We are continually attempting to reach more people. Each year we try something new to add to the fun.

People often ask about planning. I start thinking about next year’s event as soon as the current year’s event is completed.  I start organizing in the fall and our small group of five women meets in January to go over our plans. Another local family affected by Parkinson’s has joined in and helped with the live auction this year. It takes a little pushing on my part to get us moving, but each event has been a success.

We have raised more than $30,000 for NPFM in the four years we have held our benefit. Our goal is to raise awareness in our community and raise funds for Parkinson’s.

As the slogan says, we’re doing whatever it takes to beat Parkinson’s.

Claire Austin
Team Captain
Stomping Out Parkinson’s

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


Leadership candidates sought for NPFM

During its February meeting, the NFPM Board of Directors formed a search committee and charged it with conducting a search for a leader to help the organization continue to grow and enhance the lives of people living with Parkinson’s disease. Leading the search is Kent Eklund, vice president of the Board. Serving on the committee are Barb Green, Connie Perpich and Paul Blom.

Please share this opportunity with friends, relatives and colleagues. The application deadline is March 15, 2014. More information is below.



The Board of Directions of the National Parkinson Foundation Minnesota (NPFM) announces the opening of its executive director position. NPFM is a chapter affiliate of the National Parkinson Foundation and is on its way to becoming the most impressive and dynamic nonprofit organization in the region to positively impact the lives of families living with Parkinson’s disease. Our work includes creating Parkinson’s-friendly communities, a family grant program, and backing care improvement, outreach, education and support initiatives across the region. NPFM increases understanding of Parkinson’s disease and also shines light on the critical need for community support. NPFM volunteers, staff and community love being involved because we produce tangible results, express gratitude and create a fun atmosphere while building Parkinson’s-friendly communities.

The successful candidate is a strong yet collaborative and inspiring leader who has demonstrated success working with an active volunteer Board of Directors and small staff. The candidate is organized, goal-oriented and able to multi-task without neglecting management duties. The ideal candidate has demonstrated an ability to develop community partnership and is comfortable representing the organization with the Parkinson’s community, health care organizations, corporations, philanthropists and other stakeholders. The ideal candidate has experience creating and implementing a targeted case for funding. The candidate is a generalist in the truest sense of the word, doing everything from developing overall organizational strategy to budgeting, to marketing, to serving on various committees and leading advisory boards to implement desired outcomes. Finally, the candidate demonstrates exceptional communication, time management and accounting skills.

The role requires a history of success in leading nonprofit organizations or related experience, ability to work occasional evening and weekend hours and a Bachelor’s degree at minimum.

Interested candidates should forward a letter of introduction and a resume to NPFM Search Committee, 5905 Golden Valley Road, Suite 237, Golden Valley, MN 55422 or to The deadline for submission is March 15, 2014.


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 or call 763-545-1272.

For more information on DBS Therapy, visit For complete safety information about Medtronic DBS Therapy, visit

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

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.

1 2 3 4 5 6