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.

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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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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.

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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.

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

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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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Diagnosing Parkinson’s disease…by colonoscopy? Just kidding. But this idea may not be as far-fetched as it sounds! For years, people with Parkinson’s disease have been telling their doctors that Parkinson’s disease affects more than just the arms and the legs. Doctors are finally starting to listen.

Virtually everyone with Parkinson’s disease has constipation, we now realize, and for some, constipation is a very early symptom, starting years or decades before any of the motor symptoms. And for some, constipation can be a severe, functionally limiting symptom requiring a variety of treatments.

Why do people with Parkinson’s disease have constipation? Because Parkinson’s disease affects the nerves in the “autonomic nervous system,” which is the part of the nervous system that takes care of things that should be “automatic.” As adults, we don’t worry about how to make our pupils constrict when we walk outside into the bright sun, or dilate when the room is dark—these things just happen automatically. When you eat food, you don’t have to turn a crank to get the food to move through the intestines—it just happens automatically. Except when it doesn’t.

There are nerves–think of them as electrical wiring–that run through the intestines, signaling the muscles in the intestines to contract in a smooth order, so that your food goes from stomach to small intestine to large intestine, to the rectum, where the waste products are collected and excreted. Parkinson’s leads to “short circuits” in that electrical system, as some of the nerves deteriorate or die out. Then food doesn’t move smoothly through the intestine, and the strong signal, that you should get when it is time for the waste products to be excreted, is reduced or completely lost, and the net result is—CONSTIPATION.

A research team in France has found that biopsies of the colon (taken during a colonoscopy procedure), processed using special methods to visualize the nerve cells, can help. They were able to detect Lewy bodies (little blobs of protein that collect only in the degenerating brain cells in people with Parkinson’s disease), in the nerve cells in the intestine. If other researchers can confirm these results, then it might be possible to “diagnose” Parkinson’s disease by colonoscopy!

This is interesting, but finding Lewy bodies in the nerve cells in the intestine will not immediately lead to a better treatment for constipation.

How can you get relief today?

Fortunately, there are lots of ways to help people with Parkinson’s disease who have constipation! Physical movement (exercise) helps, as does adequate fluid intake. Certain foods (particularly fruits with skin, and other fiber-containing fruits, vegetables, and grains) can stimulate the intestine, while others (bananas, cheese, and rice) tend to bind people up. Caffeine, in modest amounts, stimulates the intestine, while alcohol relaxes it. A number of over-the-counter products can also help. Senna-containing products, stool softeners, such as docusate, and “osmotic agents” such as sorbitol, lactulose, or polyethylene glycol, are the ones that we recommend most commonly. How much of which treatment you use depends on the results that you get, and how often you need to pass the bowels to feel comfortable.

It is important to treat constipation—if things slow down at the far end, they tend to slow up at the top end, too. People with untreated constipation lose their appetite, sometimes lose weight. And medications, such as levodopa, that need to get into the intestine in order to be absorbed, may get stuck in the stomach. And then the Parkinson’s motor symptoms will be worse.

So, don’t be embarrassed to talk to the doctor about your constipation. Your mobility may depend on it!

Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.

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Physicians and researchers are monitoring brain chemistry of people actively living with Parkinson’s. These professionals are detecting and tracking changes in the brain antioxidant level of glutathione while individuals are undergoing treatment with n-acetylcysteine (NAC).

How it works

The drug is administered intravenously and the brain is monitored with specialized highly sensitive MRI scanners. Once it is in the bloodstream, NAC gets converted into glutathione, which is a potent antioxidant that is also made by the body.

Those who are conducting the treatments are hoping that the antioxidants will slow pathological processes that cause or advance the course of Parkinson’s disease.

How effective is the treatment?

Very preliminary findings from this study show that they are able to determine an individual’s antioxidant level of glutathione before, during and after treatment with NAC. University of Minnesota researchers believe that by using high doses of NAC, they are able to alter brain glutathione levels, which may ultimately affect the course of disease. Overall, the findings of the project look promising.

The project has two phases:

Phase 1: Prove that it can be charted in the brain

Phase 2: Chart effect of oral doses in patients

FOX 9 Reporter Dawn Stevens spoke with Paul Blom, NPFM board president, about the new treatment as well.

“We do research on national level to help prevent falls, but to have scientific ability to come up with treatment that is going to advance people’s life and quality of life, it’s pretty amazing,” said Blom.

We will be sure to share any updates and findings from this new treatment. To hear more about what is happening with Parkinson’s disease research, check out the NPFM Medical blog postings here on our News Blog.

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