Archive for the "NPFM News" Category

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.

 

 

 

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!

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