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.

 

 

 

Exercise highlighted at upcoming event

We all know that exercise is an important part of a healthy lifestyle. For individuals with Parkinson’s disease (PD) it is even more important to stay active, even though it is often difficult to exercise on a regular basis.  For people with PD, exercise is an essential component of the treatment plan, based on their individual needs and physical abilities. Medical and sometimes surgical treatments play an important role in PD but often do not fully address gait and balance issues. While exercise does not replace PD medications, it is an important component to maintaining balance, mobility and daily living activities. At the Evening Out on June 27th Dr. Julia Johnson, movement disorder specialist at HealthPartners will be providing an update on the benefits and limitations of exercise as part of a treatment option for those living with PD.

Reassurance regarding the recall of Medtronic DBS devices

People with Parkinson’s disease should feel free to contact their treating physician or clinic with any concerns. Please do not worry unhelpfully about this issue without contacting someone about your concerns.

 

By Martha Nance, M.D., Struthers Parkinson’s Center

 

We learned late last week of a recall on the Medtronic deep brain stimulator devices that are used for Parkinson’s disease. Although the recall has been classified by the FDA as a Level 1 recall, meaning that the device could cause “serious adverse health consequences or death”, the surgeons and neurologists who use the devices are confident that our patients are not at any substantial risk of harm.

The problem that was identified has to do with a temporary cap that is used by some surgeons at the time that the stimulator devices are implanted in the brain. Most neurosurgeons place the leads into the brain (the subthalamic nucleus or the globus pallidus) during one procedure. Then, in a second procedure a couple of weeks later, they place the impulse generator, or battery, under the collarbone and connect the brain leads to the battery by means of some flexible wires tunneled under the skin. At the time of the first procedure, the surgeons often place a temporary cap under the skin over the top of the leads, which is removed when the device is connected to the battery during the second procedure.

The cap is fixed in place by a small set screw. If the set screw is tightened too forcefully, it can damage one of the leads within the device. Neither the surgeon nor the patient would be aware of that at the time, because the device is not connected to a battery yet and is not turned on. When the battery is connected to the leads a couple of weeks later, it would be immediately obvious even in the operating room, and certainly at the time of initial programming, if one of the leads was damaged, because the electrical properties of that lead (the impedance) would not be in the expected range.

The DBS device has four leads, and the one that is most likely to be impacted by an over tightening of the screw is the shallowest lead, which is often not used in programming anyway (think of the subthalamic nucleus as a baseball and the DBS electrode as a bat; ordinarily, the middle two of the four contact points would most likely represent the “sweet spot” for stimulation, just as the batter would prefer to hit the ball in the middle with the middle of the bat rather than either end!) If a particular lead is damaged, one would either make a note not to use that lead for programming, or replace the device. Replacing the device obviously carries with it the risk of an additional surgical procedure.

Some surgeons do not use the cap in the first place; like wearing a hat when you go outside in early May, it is an optional thing, not necessary for the proper placement of the DBS device. Many surgeons have used the caps successfully, without over tightening the screw. The cap itself is not dangerous, and does not remain in the body after the brain leads are connected to the battery. One report that I read indicated that 0.25 percent (1 out of every 400) of the DBS devices implanted are affected by this problem, which means that 99.75 percent of people who have had DBS devices implanted are not having a problem related to this recall.

I am trying to be as reassuring as possible to anyone who has had a DBS device implanted, without making light of a problem viewed by the FDA as serious. At Struthers Parkinson’s Center, we will work closely with Medtronic in the coming days to ensure that patients are notified of the recall, that we review our records for any evidence of DBS leads that were nonfunctional at the time of initial programming, and that any of our patients who have concerns are able to speak with the doctor or nurse, or to be seen, if necessary, in a timely fashion.

People with Parkinson’s disease should feel free to contact their treating physician or clinic with any concerns. Please do not worry unhelpfully about this issue without contacting someone about your concerns. And for those who are anticipating DBS surgery in the future, do not worry about the safety of the procedure; surgeons have been instructed not to over tighten the screw, and Medtronic is working on a more fool-proof solution to this problem.

I do not receive any personal financial compensation of any type from Medtronic; the opinions expressed in the blog are my own and do not represent an official statement from Medtronic, Park Nicollet Health Services, or Struthers Parkinson’s Center.

Parkinson’s Awareness: How YOU can help

by Martha Nance, M.D., Struthers Parkinson’s Center

April is Parkinson’s Awareness Month, and because of that, many of the Parkinson’s programs in Minnesota are offering seminars or classes about the disease for people with Parkinson’s disease and their families. Several of these programs are listed in the “events” section of this website.

Seminars led by health professionals are fine and well, and they will help people new to the disease, or people new to their stage of the disease, to understand their symptoms a little better, and to know what kinds of treatments are available. But I think there is a different kind of awareness, perhaps even more important, one that YOU can help with. Think about it—your doctors and their care team can help you to understand what is happening to you, how the Parkinson’s is affecting you, what treatments would be best for you, and what problems to look for in the future.

But only you can tell other people what it is REALLY like to have Parkinson’s disease, how it is to live with the disease every day, and what they can do to help you—or to help the next person they meet who has the same diagnosis.

You are in contact every day with coworkers, neighbors, friends and relatives. Get an extra copy of an NPF brochure to give to the nosy neighbor who is always asking questions. Give your friends the address of the NPF website, so they can get accurate information about the disease. If you think that your neurologist has helped you, pass on the name to your coworker to give to his mother or aunt who was just diagnosed and is afraid. If you freeze up sometimes as you walk, teach the people around you how to help you! Remember, there was a time when you had no idea what “freezing of gait” meant. But now you do. They still don’t, though, and so you will need to tell them what helps to get you unstuck (hint: sometimes pushing you, or pulling you, is NOT the helpful thing to do; sometimes, what you need most, is time and patience. Tell them that!).

The annual Walk for Parkinson’s, called “Moving Day”, is coming up on May 4. I hope—and expect—to see all of you there, and I have spoken to the WeatherGods and promise that the snow will have melted by then. Bring your family, bring your coworkers, bring your church group. Print up some t-shirts for your group, as many participants did last year: “Gregger’s Leggers”, “Grannie’s Groupies”, whatever. Wear silly hats. This is a wonderful event that goes a long way to dispelling people’s misconceptions about Parkinson’s disease. People with Parkinson’s disease are young and old, male and female, and believe it or not, they can also be healthy and fit! Prove it to the world—dust off the cobwebs, call a friend, and come to the Walk.

Make the commitment to tell SOMEBODY about Parkinson’s this month. Only by connecting with each other, by inviting each other to share our stories and to learn about the disease, can we hope to harness all the strength and energy that is out there, and focus them on solving the problems of Parkinson’s disease, both big and small. Some people have money to support research. Some have novel ideas. Some have compassion. And others might just have the practical skills that can help a person get through the day more easily. We need them all!

KARE 11′s Dave Schwartz and Hammer Made Team Up to Beat Parkinson’s

During every week-end evening broadcast in April, KARE 11′s Dave Schwartz and Hammer Made will be teaming up to beat Parkinson’s. Tune in to KARE 11 to check out the tie Dave is wearing. All ties will be on auction and available for purchase through Ebay. All proceeds will go to help the 20,000 people and families living with Parkinson’s in Minnesota.

Dave honors his grandmother, Sylvia, with this effort. His grandmother lived for many years with Parkinson’s.

Parkinson’s is a degenerative disorder of the central nervous system characterized by tremor and impaired muscular coordination.

The National Parkinson Foundation Minnesota raises awareness of Parkinson’s disease by providing resources and information, inspiring others to show their support, raising donations to fund research and Parkinson-friendly events, and advocating for those who are struggling with the illness.

Bid on the gorgeous ties here.

“The Art of Parkinson’s” Raises Awareness and Dollars!

artparkinsonsgroupOn Friday, March 15, shoppers had many opportunities waiting for them in the western courtyard of the Galleria in Edina. They could view some lovely artwork, learn more about Parkinson’s disease (PD), enjoy yummy treats from CRAVE!, support a great cause [NPFM], see Parkinson’s-friendly clothing (much of it modeled by people with PD), and perhaps even buy some of the beautiful pieces of art created by people living with Parkinson’s. All of these opportunities could be found in one place: the “The Art of Parkinson’s.”

This event was the first of its kind in Minnesota, as far as we know. It was definitely a first for the National Parkinson Foundation Minnesota, so we really weren’t sure what to expect. We had several artists who donated their watercolor and oil paintings, photographs, fused glass or jewelry to be sold. Most of the artists are pictured below.  We had a great space, wonderful support from the stores and staff of the Galleria and a terrific stylist who outfitted the models and set up the sale.

What we found was that many Galleria customers enjoyed looking at art and then taking it home with them! Several knew someone with PD but didn’t necessarily know much about the disease. Everyone left knowing more about Parkinson’s than they did before, a lot of artwork was sold, and NPFM brought in additional funds to help the Parkinson’s community here in Minnesota and surrounding areas.

We are considering making this an annual event!  If you agree and are an artist with living with Parkinson’s disease who would like to contribute art, please let us know at info@parkinsonmn.org.

Check out our latest video

We’re excited to present our latest video dedicated to the people and families living with Parkinson’s we serve and our important partners who are making a difference in their lives.  Focused on The National Parkinson Foundation of Minnesota’s efforts to improve the lives of those with Parkinson’s disease it offers an up-close look at our important goals and initiatives aimed at changing the lives of Parkinson patients in Minnesota. Through funding outreach, education, support, and respite care the National Parkinson Foundation of Minnesota is helping to make each day a little bit better and a little bit brighter for people living with Parkinson’s. See how we’re doing whatever it takes to beat Parkinson’s.

The video was produced by Dale Bluestein, executive director of Partnership Media Television

 

 

 

Message from the Board President

Paul Blom

Paul Blom

“I am inspired by those living with Parkinson’s disease and the individuals dedicated to building Parkinson’s-friendly communities™.”

I have had the pleasure of serving as the president of the NPFM board for the past nine years, and I am proud to say that our efforts in building a valued brand have allowed us to become the leader in Minnesota and surrounding areas for Parkinson’s awareness.

During the past year we have achieved a new level of success in building awareness and driving fund raising. NPFM has recently been awarded a substantial grant from the Otto Bremer Foundation to build Parkinson’s-friendly communities™ in Willmar, MN, Alexandria, MN and Fargo, ND. It is with great pleasure we enter these new community partnership s. We also received a grant from NPF to pursue a needs assessment for a much needed Care Management Module that will assist families.

We also launched Moving Day Twin Cities- a walk for Parkinson’s disease. Historically NPFM has organized a walk for many, many years. In 2012 we leveraged the national branding of the Moving Day campaign with Katie Couric as the honorary national chair. The slogan of Moving Day is “People Who Move Change the World”. With local support from Bert and Gayle Blyleven as our honorary co-chairs of NPFM and leaders forMoving Day, our event grew in both numbers of participants and in funds raised. This success allows us to better serve the Parkinson’s community.

In the pages of our annual report NPFM Annual Report 2012, we have highlighted a  few families who have experienced living with Parkinson’s disease and others who are serving the Parkinson’s community. NPFM is truly creating a new level of awareness and hope for those living with Parkinson’s disease. Your generosity makes this work possible.

I am extending my very personal thanks to our new and long-time supporters who bring help and hope to the more than 20,000 families living with the impact of Parkinson’s disease each day. Together we are improving lives.

Sincerely,

Paul Blom, CEO Right at Home

NPFM President, Board of Directors

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