Moving Forward

Moving Forward Steps Back

Mon, 16 Apr 2012 16:01:59 GMT

Blog post by Dr. Karen Blindauer

We started our blog more than years ago and now are taking a break. We feel honored to have appeared so often on the front page of the Froedtert website. We’ve been able to share information on the illnesses that we treat, but, more importantly, we’ve shared stories about the people who have these illnesses. We’ve talked about patients who dance, sing, create poetry and prose. We’ve shared ways that people are “living well” despite chronic conditions. We have been inspired.

The Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin remains strong, comprehensive, interdisciplinary and continuously growing. We have three fellowship-trained movement disorder neurologists with over 40 years of experience among us. We have nationally renowned experts right here in Milwaukee. Our program offers the most up-to-date care in Parkinson’s disease (PD) including the state-of-the-art Deep Brain Stimulation surgery for PD and other movement disorders. Our nurses and therapists specialize in the treatment of PD and all have had the latest training.

Our Outreach Coordinator connects with all possible sources of information and referral for our patients regarding any psycho/social needs. She facilitates six local support groups and the Living Well with Chronic Conditions Program that we have spoken of so often.

The annual Wisconsin State Huntington Disease Conference meets on Saturday, April 21, at the Country Springs Conference Center in Pewaukee. Our annual Symposium for People with Parkinson’s and Their Families will take place on Saturday, September 15, also at the Country Springs Conference Center. Our annual Moving Forward: Ride/Walk for Parkinson’s event will again be held beside the Glacial Drumlin Trail in Dousman on Sunday, October 7.

We continue to teach medical students, residents and fellows, so the next generation of experts can carry on our legacy. We remain involved in research in Parkinson’s disease and other movement disorders, from the basic sciences to the latest clinical trials. We continue to participate in community lectures to educate our patients about their conditions and treatment options. We remain committed to providing the most comprehensive, state of the art, compassionate, and expert care for our movement disorders patients. We’re just going to take a break from blogging.

Vicki Conte, the Community Outreach Coordinator in the Neurosciences Center is going to begin a blog that will cover topics throughout the neurosciences from ALS, dementia, epilepsy, spine care and stroke. You’ll learn about the roles that our neurologists, neurosurgeons, neuro-psychologists, and physical medicine and rehab staff play. And importantly you’ll hear about the struggles and victories of patients who are cared for here. Tune in to "The Nerve Center" on a regular basis at www.froedtert.com/nervecenter.

Come to Our Symposium

Mon, 27 Jun 2011 11:08:26 GMT

Post written by Dr. Katie Spangler

The Greeks have given us many wonderful things: democracy and dolmades come to mind. Did you know that a “symposium” is of Greek origin?

Origin: 1580–90; < Latin < Greek sympósion drinking party, equivalent to sym- sym- + po- (variant stem of pī́nein to drink) + -sion noun suffix.

In other words, its origin defines a symposium as a drinking party, usually with music and philosophical conversation. Although we will have many drinks — coffee, tea, water, juice, soft drinks (and some amazing food also) — that won’t be the highlight of our symposium. Ours will adhere to the more current definition of “a meeting or conference for the discussion of some subject, especially a meeting at which several speakers talk on or discuss a topic before an audience.”

Our Fourth Annual Symposium for People with Parkinson’s and Their Families will take place on Saturday, Sept. 24 from 8 a.m. to 4 p.m. at the Country Springs Conference Center off of I-94 in Waukesha.

I am delighted and excited to be a speaker among the group of wonderful people presenting on several cutting edge topics. I will be speaking on the idea of “neuroprotection” and alternative therapies and how they relate to Parkinson's disease. Do they help? What is the data/scientific evidence behind such therapies? My colleagues here, Dr. Karen Blindauer and Dr. Brad Hiner will also be speaking. Dr. Blindauer will be speaking about the cognitive changes that can be seen with Parkinson's disease and Dr. Hiner will be speaking about the history of surgical treatments and Parkinson's disease.

Our Keynote Speaker is Dr. Allison Ebert, assistant professor in the Department of Cell Biology, Neurobiology and Anatomy at the Medical College of Wisconsin. She will present about how stem cells are being used to understand and treat Parkinson’s disease. Dr. Ebert received undergraduate degrees in chemistry and psychology in 1999 from Indiana University in Bloomington. She then went to Northwestern University in Chicago where she received a Ph.D. in neuroscience in 2005 specializing in neurobiology and the study of Parkinson’s disease. She completed her post-doctoral training in the Stem Cell Research Program at the University of Wisconsin-Madison in the lab of Dr. Clive Svendsen where she studied stem cell transplantation in animal models of Parkinson’s disease.

Following her post-doctorate work, Dr. Ebert joined the Department of Neurology and the Stem Cell and Regenerative Medicine Center at UW-Madison where she continued investigating stem cell transplantation for neurodegenerative diseases. She also helped establish and characterize an induced pluripotent stem cell model of spinal muscular atrophy. In January 2011 she moved to the Medical College of Wisconsin in the Department of Cell Biology, Neurobiology, and Anatomy. Her primary research interests include utilizing induced pluripotent stem cells to understand the molecular processes occurring in neurodegenerative diseases.

Daniel M. Corcos, Ph.D. is our guest speaker. He is the director of the Motor Control and Learning Program in the School of Kinesiology at the University of Illinois at Chicago. He is a professor of Movement Sciences, Neurology, Physical Therapy, and Bioengineering. Dr. Corcos is completing a two-year randomized clinical trial of the effects of progressive resistance training vs. the effects of a flexibility and strengthening program. Dr. Corcos will present his results at our symposium.

Our own neuro rehab team will encourage exercise during our “movement breaks” and we will have the added benefit of having our meals once again selected by our registered dietician, Sarah Zangerle. Sarah has several surprises up her sleeve to encourage us to eat healthily. And, as always, we will have 20 or more exhibitors that have specific interest and knowledge in Parkinson’s.

To register for the Parkinson’s Symposium, please call 414-805-3666 or 800-272-3666. Registration is only $10 for breakfast, lunch and the amazing program described above.

View the "Save the Date" flyer.

I guarantee that it will be well worth your time!

The following is feedback received for this blog:

Do you have any classes like Living Well with Chronic Conditions that might help those of us who have CMT Charcot Marie Tooth Inherited Neuropathy? We have recently formed a support group here in SE Wisconsin and are searching for any guidance that would be helpful for us. CMT is different from Parkinsons, but is life long, with such a variety of similar symptoms. Thanks.

- Susan Moore

Hello Susan – Living Well with Chronic Conditions is designed for folks with almost any chronic conditions (except dementia). It would be very appropriate and helpful for your group members. If you wanted the Milwaukee County representative to speak to your group, I bet he would. His name is Harvey Padek. Beyond Living Well, I’m just not sure what’s out there. For the various support groups I facilitate, I try to find topics and speakers that can either educate about the disease with an emphasis on coping strategies or people that actually inform on “living well” type strategies i.e. the various therapies, breath work, guided imagery, yoga or tai chi, etc. Good luck to you and your group.

- Vicki Conte
Community Outreach Coordinator

Ride/Walk a Big Success

Fri, 14 Oct 2011 14:27:15 GMT

The Moving Forward: Ride/Walk for Parkinson’s was a huge success! The weather was gorgeous — 70s and sunny with peak fall colors. The turnout was great — almost 200 riders and over 200 walkers. The opportunity to exercise and socialize was abundant. The band was terrific, and the children’s activities area and raffle were both big hits.

The Parkinson’s and Movement Disorders Program took in almost $60,000 to be used toward patient education and support, community exercise and dance classes for people with Parkinson’s, specialized training of our Parkinson’s team and various translational research projects in the lab run by Chris Butson, PhD, here in the Neurosciences Department

Volunteer John Chaplock took lots of pictures at the event and has posted them on Picasa.

Getting Ready for the Ride!

Wed, 05 Oct 2011 14:45:38 GMT

Post written by Dr. Blindauer

Oct. 9 is going to be a beautiful day — mid-70s and sunny with the trees in full color.

We again expect 500 riders and walkers in Dousman for the 3rd Annual Moving Forward Ride/Walk to support the Parkinson’s Program at Froedtert & The Medical College of Wisconsin. Besides being a successful fund-raiser for many aspects of our program — patient education and support, community PD exercise programs, specialized training in the latest PD treatments for our team members and supplemental support for the translational research lab of Chris Butson, PhD, located right in our Neurosciences clinics — the event provides very tangible examples of the benefits of exercising and socializing in the management of Parkinson’s.

Check out the event brochure, which has maps, instructions, parking information and the calendar. Speaking of the calendar, the event will include children's activities, live music, an amazing raffle and even more amazing meal. People can register, donate or just stop by to “witness” the event and put a few dollars towards their favorite raffle item.

All official registrants are entered into a drawing for a $100 gift certificate to the Delafield Brewhaus and all volunteers are entered into a drawing for another $100 gift certificate to the same. Raffle tickets are $1 each or six for $5. Some of the raffle items are as follows:

Silent auction for two footballs signed by three members of the Super Bowl Packers team
3 hats signed by numerous members of the Super Bowl Packers team
4 packs of Brewers, Zoo and Betty Brinn Museum tickets in children’s activity area
Childrens Trek bike
Green cleaning supply basket
Date night basket — Bartolotta gift card/movie passes
Door County Shore Line restaurant dinner for two
Skinny Girl basket with fixings
Fine chocolate basket
Door County Cooking School basket
Free medium pizza for a year at Pizza Hut (2 winners)
Brain teaser bag
EZ Windows $100 gift certificate (4 winners)
Gills Rock stoneware lighthouse
Frykman carved walking sticks (3 winners)
Bentley art print from Door County
Froedterdt & The Medical College of Wisconsin logo basket
Fred Astaire dance certificate
Cat basket
Dog basket
Fall table linens with two bottles of wine

Living Well With Chronic Conditions

Tue, 30 Aug 2011 15:20:09 GMT

Post written by Dr. Brad Hiner

Parkinson’s, Huntington’s, Dystonia and even Essential Tremor can take a devastating toll on the quality of an individual’s life. As a physician, I can assess, diagnose, prescribe and make other recommendations such as developing an exercise program. Once, twice, three or even four times a year, I may see a patient in clinic. I listen, assess, change the medication regimen and make other recommendations, but my intervention is a small piece in the care of a person with a chronic illness. In fact, the standard of care for chronic conditions is “self-management.”

Over a year ago, Froedtert began offering the 6 week course, Living Well with Chronic Conditions, developed at Stanford University some 15 years ago. It is now offered all over the world. Many of my patients have participated in the course, and I have seen a difference in their attitude and in their relationships with me. Here are a few of the differences:

My patients come to their appointments more prepared, more engaged and more desirous of being a partner in their care.
They understand that to make the best use of our time together, letting me know “what is different for better or worse since your last appointment,“ is the best way for me to begin my assessment.
They understand that they can show me a list of 15 concerns, which I will study to see if a dangerous symptom jumps out at me; but, realistically, we can only address their top two or three concerns.
If I begin to “close” the visit and they haven’t understood something, they are empowered to ask me to go over it again.
My patients understand that while I am on the alert for depression and anxiety issues, many of the psycho/social problems they might have are better served by our Program Coordinator who is available to them without time constraints or cost.
They have come to understand that education and support are ongoing through our team, and they can attend a new patient orientation, support groups, community education talks, symposia, community exercise programs, therapy sessions and more.
Our nurses are well-equipped to answer medication questions and to triage patient concerns.
I am not the only contact that is available to help, and sometimes, I’m not the best contact for certain types of help.

My patients are embracing the idea of using a variety of “tools” to “break the symptom cycle.” That’s "Living Well" talk, but it’s very effective. When a person has pain, it can lead to fatigue, which can lead to difficult emotions like frustration, which can lead to isolation, which can lead to depression. You get it. At any point in this cycle, a tool such as distraction, stretching, or deep breathing, can really break the cycle. Having an entire toolbox of these strategies and techniques is what "Living Well" teaches.

Here are a few things my patients have said:

‘“'Living Well with Chronic Conditions' helped me in so many ways. It helped me get out of the house and socialize. I started making commitments to myself. I started exercising…”

“This class opens doors for people with chronic conditions helping them to learn coping skills with their condition, discussing avenues of treatment, exercise, eating and communication with family and doctor, providing a more positive approach that can be taken toward their chronic condition.”

“This class supports the acquisition of self-empowering tools which allows a person to proceed in their healing an coping skills.”

Learn more about the "Living Well With Chronic Conditions" classes available through Froedtert & The Medical College of Wisconsin.

Learn more about these classes offered around the state.

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Parkinson's Disease Awareness Month is About More Than the Disease

Mon, 18 Apr 2011 13:26:20 GMT

Post written by Dr. Karen Blindauer

April is Parkinson’s Disease Awareness Month. Every April I try to review all the ways people are doing well with Parkinson’s.

I like to touch base with Terry Steffen, PT, and the other marvelous physical therapists who are running the now 12 Parkinson's Disease (PD) exercise programs being offered around southeastern Wisconsin. Terry started his program at the Brown Deer YMCA almost 10 years ago and it has grown, and grown and grown. I see it helping so many of my patients both physically (gait, balance, flexibility and even voice) but also socially. Twice a week they see their workout friends, and they encourage and inspire each other.

I have other patients who participate in the Yoga for Parkinson’s class at the Milwaukee Yoga Center, and they have done so for years.

I’m also so pleased that we’ve had dozens and dozens of people with Parkinson’s complete the Living Well with Chronic Conditions six-week workshop. These folks are taking an active part in managing their Parkinson’s.

The Program that most makes me smile is the Parkinson's Dance Wisconsin (PDW) program. On Friday, April 8, 2011, two members of the Mark Morris Dance Group conducted a master class for the students of PDW, which is an adaptive dance class developed specifically for people living with Parkinson’s disease.

Dee Schwaiger, owner of the Exercise Studio in Mequon, is the founder of the PDW. She began the program after seeing an increase in people with Parkinson's disease come to the Exercise Studio for Personal Training. She collaborated with dancers, Jane Brooks Reilly, Susanne Carter, Kate Mann and Tom Thoreson. Since the Fall of 2009, they have been teaching classes, creating a curriculum, and sponsored a Celebration of Parkinson’s Dance at the Jewish Community Center in Whitefish Bay.

Al Jones dances with his wife, Thelma. Al says participating in the Parkinson's Dance Wisconsin program has helped him with some of the effects of Parkinson's disease. To read more about Al, read the January 2011 issue of Froedtert Today.

The program is open to anyone wanting to feel more confident in their balance, gait and mobility.

Mark Morris Dance Group founded Dance for PD™ in Brooklyn, New York. The program is run by David Levanthol, a former dancer with the group. He retired from performing and has been running Dance for PD™ full time. They have established a reputation as a leader in the field. They conduct teacher training programs while using dance to help people with PD.

In the Fall of 2011, instructor Kate Mann of PDW visited the Mark Morris Dance for PD™ in their facility in Brooklyn. In so doing, she made contacts that helped to make the connection between the two programs. The result was this very special master class.

John Heginbotham and Samuel Black conducted the master class, which was held at the Jewish Community Center, 6255 North Santa Monica Blvd. Whitefish Bay, WI. They both appeared with the group in its one night only performance on Saturday, April 9, at the Wilson Center for the Arts in Brookfield.

Fifty participants began sitting in chairs, facing different directions. They were led in gentle warm-ups some of which reflected the group’s repertoire. This developed into standing activities using the chairs as a ballet barre. The teachers then split the group into two groups and led them in movements across the floor. In closing, the class was pulled together into a circle of sharing and giving movements to each other.

It gave Parkinson’s Disease Awareness a whole new meaning!

My thanks to Suzanne Carter — much of the information on Parkinson's Dance Wisconsin is from an article she submitted to the Wisconsin Dance Council for their Spring 2011 newsletter.

Get Active!

For more information about any of the programs mentioned in this blog, please contact Parkinson's and Movement Disorders Program Coordinator Vicki Conte at 414-805-8326.

The following is feedback received for this blog:

Wow, I had NO idea that Mark Morris had this commitment to PWPs. Bravo! I've always liked his innovative dance troupe.

I've got several friends with PD, and have recently found a few blogs that have helped me understand what their experiences (all so different) are like. Here's one. Take a look when you can.

http://parkinsonsand5htp.blogspot.com

Keep dancing, everyone!

Trevor

Pictures From the Dance Class

Tue, 26 Apr 2011 12:12:30 GMT

Post written by Dr. Karen Blindauer

Here are some pictures to accompany my last blog post about the Parkinson's Dance Wisconsin. Dee Schwaiger, founder of Parkinson’s Dance Wisconsin, snapped these photos as the Mark Morris dancers put the class through its paces at the Jewish Community Center in Whitefish Bay.

Authors With Parkinson's - Part II

Wed, 16 Mar 2011 13:52:59 GMT

Post written by Dr. Bradley Hiner

This is the second part of my two-part post on people who have turned to writting following a diagnosis of Parkinson's disease. Let’s take a leap of three decades in age and talk about Erv Penkalski.

Erv is 88 and was diagnosed with PD in 1999 although he’s sure he had it for at least 5 years before that. Again, myriad symptoms existed before they were analyzed and pulled together into a diagnosis of PD. Erv is also writing a book. He’s written throughout his career as an engineer with a PhD in education. His book begins, “I am 88 years old, and in the advanced stages of Parkinson’s disease. ... I am writing this book from my room in a nursing home – supposedly my final refuge from the ordinary cares of the world. With each day I have a fierce struggle with routines that a decade ago I wouldn’t have given a second thought. This morning it took me 45 minutes to get out of bed and into the wheelchair that was parked beside the bed.”

Dr. Penkalski’s motivation to write this book is similar to Rick Secklin’s motivation: to help others with Parkinson’s and to educate the public. Erv’s emphasis is on the health care system that doesn’t always understand the nuances of Parkinson’s. He wants to help professional caregivers learn better ways of helping him and other people with PD. He is an inspiration.

Erv’s wife, Mary, “the girl of [his]dreams,” submitted his story to Nursingmatters magazine and it was published in the January 2011 issue. It can be accessed at:

http://www.epaperflip.com/aglaia/viewer.aspx?docid=d16402e4b9904bb991cd1fd59b10339f&page=1

Authors With Parkinson's

Wed, 23 Feb 2011 13:13:29 GMT

Post written by Dr. Bradley Hiner

This is the first of a two-part post on peope with Parkinson's who turn to craft of writing post-diagnosis. The first person I want to write about is Rick Secklin, 57, a former deputy sheriff who was diagnosed with Parkinson's disease in 2003.

Rick spent some time after his diagnosis really struggling. I know a number of guys in Rick’s age-range who have lost a lot in the years after their Parkinson’s diagnosis: jobs, insurance, relationships including marriage, self-esteem. Rick fought back and chronicled his journey in a self-published book called Looking Down the Barrel: Deputy Sheriff’s Midlife Memoirs.

“Writing this book and then speaking about it is my way of finding a new identity and giving back,” says Rick. Rick is especially interested in the idea that before he manifested the motor symptoms of Parkinson’s like tremor and rigidity, he had some emotional/psychological things going on that he attributes to the Parkinson’s. “I wonder if my wife and I had known that I had Parkinson’s, would we have been able to attribute my depression, isolation, mood swings and more to the disease? We might have been able to save the marriage.”

Rick has started a website: www.pwphelp.com. It contains links to information about his book and about Parkinson’s disease in general.

There are several “pre-motor” symptoms of Parkinson’s and depression is one of them. Others may include:

REM (Rapid Eye Movement) sleep disorder
Loss of sense of smell (olfaction)
Anxiety
Constipation

Not every person diagnosed with PD has had an earlier depression and not everyone with depression is going to be diagnosed with PD, but there is enough evidence for us to know there is a real relationship. There is also a much higher incidence of divorce among younger onset people with Parkinson’s. And yet, Rick has found love and marriage again as have a number of young-onset patients that readily come to mind.

I have also had a number of patients who, unlike Rick, have searched for love and been hurt or even scammed. Sometimes people with PD can manifest an impulsivity that creates behavior that wouldn’t have been normal to them. Like marrying a stranger and moving away with them. The ready availability of the Internet can be a great thing for people with any disability that limits their mobility. Unfortunately this can be a double-edged sword: There is a lot of misinformation about PD, including “miracle cures” for Parkinson’s (like the ridiculous wristbands for “balance”), and there are also individuals looking to prey on the vulnerable relationship-wise. I have had several of my male patients be taken advantage of by scammers who end up emptying their bank accounts in the guise of offering a relationship up to and including marriage. Here’s a tip: The picture posted on the Web is almost never what he or she actually looks like.

It’s not only people with Parkinson’s that can be duped; but when a disease affects judgment the way Parkinson’s can, it’s wise to listen to those closest to you and not rush into relationships or enterprises that can leave you emotionally and financially devastated. As surprising as it might sound, it is important to share the facts of new impulses and either compulsive or impulsive behaviors with your movement disorders neurologist. We may be able to shed some light on the situation and hopefully help.

A Thankful Farewell

Thu, 13 Jan 2011 16:29:58 GMT

Post written by Dr. Serena Hung

This is my final blog. I think a lot of my patients have already received letters or have heard from some other sources that I will be leaving the Medical College of Wisconsin. I have been at the MCW for five and a half years. It has been an eventful and fun 5.5 years.

I have learned a lot throughout this time. I came to MCW straight out of movement disorders fellowship training. It was my dream job at the time with the promise of ample patient contact, good research support and intelligent residents to teach. From the patient contact point of view, I have been thoroughly satisfied and thoroughly humbled. My patients taught me so much. They taught me the real meaning of living strong and making the most out of bad situations. Some of my patients became my personal idols (you know who you are), demonstrating to me how to be a good person and inspiring me to be the best I can be. Because of them, I believe I became a better physician, and perhaps a better person (I sure hope so).

I have done some interesting research. I have worked on various projects on Parkinson’s disease, Huntington’s disease and essential tremor. I have collaborated with amazing researchers here at MCW and around the country.

The third part of my job was to teach. I have taught some very motivated residents and a fellow with whom I am proud to be colleagues. I have also taught some medical students in various capacities. It was fun and rewarding for me to see them grow and find their own paths. It has been especially rewarding to see Dr. Katie Spangler complete her residency, then her fellowship and blossom into a wonderful movement disorders neurologist, making our program even stronger.

One of the things that I am most proud of was to be part of a team of people who truly want to improve patients’ lives. The Parkinson and Movement Disorders Program took shape during the first couple years after I arrived. Vicki Conte has been instrumental in getting everyone together and motivating all of us to grow. We have been able to do a fair amount of community education in the form of the annual PD symposium and other community education lectures. We have participated in various education programs to better equip ourselves to help our patients.

Okay – the proudest thing I have done in these five years was landing a husband. Haha!!!!! Dan is a native Wisconsinite. He introduced me to some of the native Wisconsin activities/pastime such as beer and brats. I have taken up mountain biking and kayaking because of him. I have learned how to ride a motorcycle/scooter and have ridden on some of the most amazing country roads in Wisconsin. He also asked me to learn how to sail and I did, even though I had to take medication to suppress my motion sickness every time I sailed. We have family in SE Wisconsin and we will be coming back every now and then.

The reason why I am leaving is that I think it is time for me to try something new. As I have alluded to before, I have always liked research. I like the process of research. I like what research can bring. Without research, we wouldn’t understand more about diseases and drugs wouldn’t be developed to help more patients. At this time, I would like to devote more time to research. I will be working as a researcher at Biogen Idec in Boston. Biogen Idec is a mid-size biotech company that is fully dedicated to biologics for neurologic diseases. My main duties will be conducting clinical trials to bring biologics to patients. I’ll be travelling to far-flung places (okay, Europe mainly) to conduct clinical trials. What’s more, my office will be right next to MIT (Massachusetts Institute of Technology) which means I’ll be among my own kind (nerds) again! (I majored in chemical engineering during my undergraduate years)

As I have been saying during the past few weeks, I hate goodbyes. They make me sad. Especially since there are many people I am going to miss. I will miss my patients. I will miss my friends, many of whom happen to be my colleagues. I will miss my family in Wisconsin.

I am confident that the Parkinson and Movement Disorders program will continue to thrive and I look forward to coming back in the fall for the Moving Forward bike ride/run/walk event.

The following is feedback received for this blog:

To Dr. Hung, Jim says many thanks for the tlc which was above and beyond the call of duty. I know your caring and intuition has made my life easier. We new you would be moving on and wish you much happiness, an old American proverb. The Herns

All I can say is wow we wanted you to know that you will be truly missed. You will always be remembered as the first great person that helped with my condition. I spent the last 2 or 3 Thanksgiving Eve's getting botox shots LOL it was turning out to be the kick off to my Holidays. I wish you luck with your adventures in your professional and personal life. I hope I get to read some article about a big medical break through and your name is on top. I really want to thank you for everything over the past few years. You have stuck with me and helped in so many ways. As I start to look for a Dr. I can only hope they have a attitude that can match yours. You have made a difference in my and my families life.
Thank You,
Jerome
Amy, and Xaiver Hansen

Thank You again Dr Hung,
Jerome

Beautiful Day, Fantastic People

Wed, 17 Nov 2010 16:01:38 GMT

Post written by Dr. Karen Blindauer

Slideshow

To see pictures from the run/walk/fun run, please visit the photo slideshow of this event.

10/10/10 was a beautiful day. It was warm, sunny, and fresh. The trees in the Dousman area were in full color. 500 riders, walkers and runners came out to support the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin. Among those were me, my husband, son and neighbors, Drs. Hiner and Hung (Dr. Spangler was on call in the hospital), gold medal cyclist Connie Carpenter-Phinney, three of the Klement’s Racing Sausages and more than 50 hard-working volunteers who served as route sentries, rest stop workers, cooks and servers, massage therapists, face painters and more.

But the stars of the show were the people with Parkinson’s and their families. Like Jeff Kramer, who rides a three-wheeler. Balance problems from his Parkinson’s prevent him from riding a two-wheeler anymore. Jeff has never ridden his three-wheeler farther than four miles. But at 10:30 a.m., he set out with a group of about 50 folks — some on tandems, some on three-wheelers, some on one-speed bikes. This was the Parkinson’s community and their chidren and grandchildren. As Jeff started to struggle at about the five-mile point, he took a rest and a drink at the rest stop ... and then he peddled on. Despite the description that the 10-mile course was not hilly, he was struggling up a good-sized hill.

Meanwhile, world-class cyclist Connie Carpenter-Phinney, was closing in on the finish of her 100K ride. Connie is married to Davis Phinney, who was the first American to win a stage in the Tour de France and who established the Davis Phinney Foundation tp inspire and inform people living with Parkinson's. Connie had set out with a group of 50 at 8:30 a.m. One of those folks was George McCullough who had completed the 100K last year on a 40-year-old Schwinn in about six and a half hours. This year he had a new bike and it looked like he was going to shave about two hours off his time.

As Connie glided up a hill, knowing she only had a couple of miles to go, she saw a small man pumping hard on a three-wheeler, and she slowed her pace to accompany him. One of the thrills of Jeff Kramer’s life was riding across the finish line beside Olympian Connie Carpenter. The thing is, it was one of the thrills in her life, too. She knew it took Jeff more courage to ride his 10 miles than it ever took her to ride 60.

At 11:00 a.m., the walk began. 300 people lined up behind the Klement’s Hot Dog and set out to walk either one or two miles on the Glacial Drumlin Trail. It was a sea of color. Bill’s Buddies had a team of 60 family and friends, and they wore yellow. Team McCullough had 50 and they wore green. The rest of us wore blue and the Hot Dog, of course, wore “hot dog!” That may become next year’s new crayola color.

After the walking, riding and running, we entered the big tent and listened to live music by “Off the Grid,” the band fronted by Tom Klein, owner of The Bicycle Doctor, which hosted the event. We ate a hot meal of brats and Saz’s pulled pork. We walked around little downtown Dousman and felt like a community. I’m so proud to be a part of the Parkinson’s community. I’m so grateful that we raised $50,000 for our Parkinson’s Program. That money will be used to provide books and DVDs and support group speakers and other educational materials for people with Parkinson’s and their families. We will be able to put on our annual Symposium next year at a low cost to patients and families. We will be able to supplement the cost of community exercise classes. We will be able to send members of our team for further specialized training in the field. And we will be able to offer support to various research initiatives for Parkinson’s within the Neurosciences department.

Thank you!

Parkinson Symposium Recap

Thu, 07 Oct 2010 16:10:09 GMT

Post written by Dr. Katie Spangler

Usually I just have one patient and a couple of family members at any one time in the clinic. I don’t think I’ve been with 402 people with Parkinson's disease and their families all at once! I found myself in that situation on Saturday, Sept. 25, at the Country Springs Conference Center ... and it was awesome! Here are some of the things I found most interesting:

Eric Ahlskog, PhD, MD, who was our keynote speaker from Mayo Clinic, is kind and patient beyond belief. After his presentation and Q & A, he spent another hour over lunch surrounded by people with Parkinson's disease answering questions. He really needed to hit the restroom and head to the airport, but he waited until every last person was satisfied. As a newly practicing Movement Disorders neurologist, this was a great example of a seasoned physician still interested in his work and the people he serves.

Harvey Padek, who teaches and markets the Living Well Program throughout southeast Wisconsin IS A VOLUNTEER! Harvey went through the Living Well Program when he was struggling with his post-polio syndrome, and it changed his life. Harvey gives countless hours of his time leading the program and talking to groups about it. We are now offering Living Well with Chronic Conditions, a free program, here at Froedtert & The Medical College of Wisconsin and our patients are reacting in much the same way — it is changing their lives. Self-management is the standard of care for chronic conditions — whatever the condition — and learning to deal with the pain, fatigue, difficult emotions, etc., that come along with these conditions makes all the difference in quality of life. Call 1-800-272-3666 and ask for information on the Living Well Program.

We had an amazingly tasty, healthy lunch and it was all planned by our registered dietician, Sarah Zangerle. Not only that, she explained why she had chosen what she chose and gave some great occupational therapy tips to folks who have tremor and stiffness. Did you know that keeping your elbows in and arms close to your body — even resting on the table — will give you more control while eating soup or drinking from a glass? See the attachment that Sarah prepared. By the way, I was delighted that chocolate-covered strawberries were included.

Even though it was after lunch and the talk was about sleep, Dr. Karen Blindauer did not have anyone dozing off in the audience. This topic is so important because poor sleep can result in worsening of some of the symptoms of Parkinson's disease. Why are sleep problems so common in people with PD? Parkinson's disease is more than a dopamine-deficiency disease. Karen covered vivid dreams, rapid eye movement (REM), sleep/behavior disorder, obstructive sleep apnea, restless leg syndrome, periodic limb movements of sleep, and daytime sleepiness. Fascinating information with lots of suggestions to personally improve your sleep!

I think another reason we didn’t have daytime sleepiness during the symposium was that after each speaker, we had a “movement break.” Stretching, standing, stomping, shouting or exercising our voices in some fashion at least once every 30-60 minutes keeps our blood circulating and “wakes us up.” It helps to keep us flexible and balanced. Keeping blood circulating well, may help with orthostatic hypotension — which is the decrease in blood pressure some people with Parkinson's disease experience when they go from sitting to standing.

While visiting the various exhibits, I enjoyed seeing information on additional helpful activities for people with Parkinson's disease such as Tai Chi, dance, treadmill exercises and even therapy dogs. Lily, the gentle yellow lab from the Delta Society, Certified Therapy Dog program, stole my heart. I visited exhibits from a supportive home care company and an Adult Day Center. These businesses can often keep a person living at home much longer by giving caregivers an additional opportunity for assistance.

Finally, while I thought that our biomedical engineer, Chris Butson, PhD, was brilliant, and I feel privileged to work with Dr. Brad Hiner, who has been working successfully with DBS for 13 years, I must say that my favorite speaker was the last speaker and her husband. Attorney Kristin Tietz-Janis is my older sister. My goal by “giving up my presentation slot”, was to have her inform and educate us on very important, often misunderstood legal issues. I hoped she could simplify perceived complicated issues. I was content that she and her husband, Kevin, gave an extremely helpful presentation on estate planning. They explained the differences between wills, living wills, durable power of attorney and health care power of attorney. They even put us through a real-life exercise, which I thought effectively illustrated the importance of estate planning. I suspected Kristin was smart, but it was good to see the proof of it.

A Little of This, a Little of That

Sun, 29 Aug 2010 13:30:30 GMT

Post written by Dr. Karen Blindauer

Here’s an amazing story where fun and generosity combine:

I like to golf. I have a patient whose wife works for Time Warner Cable. Time Warner Cable has an annual employee golf outing. This year it took place at The Bog in Saukville on Saturday, Aug. 14. The TWC folks have a lot of fun. They golf, they eat, they socialize; but here’s the amazing part: THEY GIVE BACK. Every year they chose a charity suggested by an employee. This year, my patient’s wife suggested the Parkinson’s Program at Froedtert & The Medical College of Wisconsin. Employees bought (hundreds of) raffle tickets and stuffed them in the jars for various prizes. A handful bid on pricier silent auction items. All of these items had been donated. The money raised on the raffle and the silent auction amounted to $4,000! Thank you Time Warner Cable employees!! We will use that generous donation to further our efforts in the areas of patient, family and community education and support as well as make it available for the efforts taking place in the Chris Butson Research lab.

Here’s what’s on the calendar as we move into fall. Hard to think about fall with the heat and humidity we’ve been having. I’m thinking about it because my son has turned 5 this year, and we have begun “school shopping” for the first time!

For the Parkinson’s and Movement Disorders Program, September means Parkinson’s Symposium (see the Parkinson's Symposium invitation) and October means Moving Forward: Ride/Run/Walk for Parkinson’s.

Check out the lineup for the Sept. 25 Symposium for People with Parkinson’s and Their Families:

Keynote address:
J. Eric Ahlskog, MD, PhD
Professor of Neurology at Mayo Clinic College of Medicine, and Chair, Section of Movement Disorders, Department of Neurology, Mayo Clinic
Debunking Ten Myths that May Sabotage Treatment of Parkinson’s Disease.
Also, Q&A: Dr. Ahlskog will also take your personal questions at his table in the Exhibit Hall over the lunch hour.

Harvey Padek, Master Trainer
Chronic Disease Self-Management Program: Living Well with Chronic Conditions.
Several of our patients have already attended this program and are learning how to problem solve and “self-manage.”

Christopher Butson, PhD
Assistant Professor, Medical College of Wisconsin
Hear a description of his Parkinson’s research – Up to the Minute. You’ll have a chance to work with some of his experiments interactively and his presentation includes 3D images of real brains!

I know how my patients struggle with sleep issues. I’ll give a talk called “Parkinson’s and Sleep: From A through ZZZZZZZZZ.” My Co-Director, Brad Hiner, MD will talk to us about his “Reflections” on 13 years of work with Deep Brain Stimulation.

And our newest Movement Disorders physician, Katie Spangler, MD, has volunteered her sister and brother-in-law, Attorneys Kristin Tietz Janis and Kevin D. Janis to address “Basic Estate Planning – What are the tools and how do I use them?” This session will describe basic estate planning strategies and will differentiate between wills, living wills, trusts, and powers of attorney. They will also discuss why estate planning is important.

As Far as Moving Forward: Ride/Walk/Run for Parkinson’s:
It’s a great way to combine two of the top three things that are good for our brains – exercise and socializing! (Learning something new is No. 3). I haven’t decided if I’m riding or walking or running; but my family and I will be there. I hope you will, too.

Another marvelous and beloved activity is resuming in September: Moving and Grooving Parkinson’s Dance Program. My patients who participate in this class are performing all three cognition improvers – exercise, socializing AND learning something new! Learn more (PDF).

By the way, another way to learn is through reading and navigating the Web. I hope you’ve noticed that we've created a blog roll, which can be found on the right hand side of this page. This means that a visit to our blog will be “one stop shopping” to other blogs of interest to the Parkinson’s community. In the weeks ahead, we’ll add blogs we find helpful and empowering relating to some of the other movement disorders that we treat, i.e., essential tremor and dystonia.

DBS Summer Picnic

Fri, 06 Aug 2010 16:38:48 GMT

Post written by Dr. Bradley Hiner

From left, Drs. Hiner, Hung, Kopell, Chris Sheridan, Vicki Conte and Sherrell Bertoni.

It was a “stimulating” and “stimulated” group gathered together on Saturday, July 10, at the Falk Park Pavilion on the edge of Oak Creek, Wisc. The deep brain stimulation (DBS) team from Froedtert & The Medical College of Wisconsin was on hand to cook up burgers, brats and hot dogs for a very special group of people. Among the crowd of 50 were 18 people who have had deep brain stimulation implant surgery, and they were surrounded by their spouses, siblings, children, grandchildren and friends for a pot luck picnic.

This pleasant picnic outing, supported by Medtronic and their representative Cathy Dorangrichia, was designed as an opportunity to share a bite to eat with special friends. It quickly turned into a special day of gratitude, caring and sharing. The DBS team was represented by Dr. Brian Kopell, implanting neurosurgeon; Dr. Serena Hung, movement disorders specialist; DBS nurse programmer Sherrell Bertoni; Chris Sheridan, DBS program manager; and Vicki Conte, Parkinson’s Program coordinator. Oh, and me. I have been assisting in DBS surgery for five years here at Froedtert & The Medical College for seven years before that at the Marshfield Clinic. We introduced ourselves and then asked each of the picnickers to do the same and to say a few words. Here are some of the quotes:

“I felt like I had my husband back after his DBS surgery.”

“Having DBS surgery got my tremor under control and that gave me the confidence and self-worth to leave a verbally abusive marriage. I knew I could continue to work and support myself and finally felt I deserved respect.”

“We love to travel and to dance. DBS allowed us to stay out on the dance floor. Now we have plans to travel to India and South America for six weeks this fall, and then we’re off to Lima, Peru, this winter to teach English.”

“I am 47 years old and have had Essential Tremor for 40 years. DBS has eliminated the tremor in my right hand. I feel like a new man. I can’t wait to schedule surgery for my other hand.”

“I know DBS can’t cure my Parkinson’s but it has pushed back the clock on my symptoms. I am still raising children, and I want to be as active during these years as possible.”

The room was full of smiles and a few tears of joy, including one gentleman who had DBS surgery earlier this year as treatment for his Parkinson’s disease. He was bouncing his 6-month-old granddaughter on his knee, moving with ease to play with her, pick up her rattle, smile and engage her. His son and daughter-in-law clearly had no reservations about his taking charge of little Lily. This is a scene that would not have been possible before his DBS surgery.

“Thank you,” “thank you,” “thank you,” “thank you” was the universal mantra. The expressions of gratitude were greatly appreciated by the DBS team, but each of us on the team knows that the true heroes are the people with Parkinson’s disease and their families and caregivers, who continue to take the fight to PD every day. Thank YOU!

Another Doctor Joins the Group ... a Cheesehead!

Fri, 23 Jul 2010 11:30:07 GMT

Post written by Dr. Katie Spangler

Hello, I'm Dr. Katie Spangler, and I am very excited to continue my career here at Froedtert & The Medical College of Wisconsin as a new movement disorder specialist. I am a board-certified neurologist and recently finished my movement disorder fellowship and am honored to work with such an experienced, conscientious and knowledgeable group of faculty and staff in the Parkinsons and Movement Disorders Program.

A little bit about me? Well, I am a cheesehead. Although I have traveled throughout the world, I am proud to call Wisconsin my home. I have lived in Wisconsin my entire life, where I continue to enjoy spending time outdoors gardening, fishing, boating, canoeing and spending time with my family and friends. Of course, as you notice by the pictures below, I also enjoy spending time with my pet pug, Wally. The majority of my family continues to reside in Central Wisconsin.

I chose a movement disorders specialty partially because of the personal experiences I have had. My dad got diagnosed with Parkinson's Disease over fifteen years ago. I have developed, through this personal experience, a unique viewpoint on how a neurodegenerative disease can affect the entire family and not just the patient. In addition, I am fascinated by the neurophysiology of neurodegenerative disease. That fascination fuels a life-long urge to never stop learning and obtaining knowledge.

My goal is to provide evidence-based, conscientious and thoughtful care to both my patients and their families.

On Wisconsin and go Brewers!

Here are a few pictures of me with some of the things I love best:

Chronic Disease Self-Management Program

Thu, 20 May 2010 12:09:06 GMT

Post written by Serena Hung, MD

A recent edition of AARP The Magazine has an article on the Chronic Disease Self-Management Program developed at Stanford after a three-year long research study that showed a decrease in doctor visits and improved communication with physicians and an overall sense of empowerment for patients.

This program was launched at Stanford in 1992 and was adopted nationally by Kaiser Permanente in 1998. Nationally, 5,000 workshop leaders have been trained. Here in Wisconsin the program is called Living Well With Chronic Conditions. It is offered all over the state at locations that can be found at the Greater Wisconsin Agency on Aging Resources Web site.

Workshop Video

View a video that shows details of the Living Well With Ongoing Health Conditions Workshops.

Though this is the Greater Wisconsin Area Aging Resources Web site, remember, you don’t have to be old to benefit from these classes.

Here’s several reasons that I think this program is right for my patients:

We treat people with chronic illnesses — sometimes one patient may have several.
These patients can have lots of issues around fear, depression, fatigue, stress & anxiety and pain. Living Well addresses all of this in an empowerment model. The patient creates his/her own unique “Action Plan.”
This program is designed to mix people with a variety of chronic illnesses together with the thinking that many share the same issues and sometimes it’s good to realize that other people have challenges, too. The action plans are individual, anyway, so it’s not so important to be only with other people with Parkinson’s.
Finally, our program coordinator, Vicki Conte has now been trained as a leader along with two Froedtert & The Medical College of Wisconsin program coordinators, Donna Johnson and Michelle Messling and three volunteers, Kate Olszewski, Lynn Ihlenfeld and Carol Ryback (thank you, ladies!).

So, we launched our first Living Well workshop on May 18 for our own patients! I had several patients attending this inaugural class. There will be a series of six-week sessions offered this year. For more information, see our flyer. To sign up for the classes, please call 800-272-3666:

Mondays, July 12 – Aug. 16; 8:30 – 11:00 am
Mondays, Sept. 13 – Oct. 18; 8:30 – 11:00 am
Mondays, Oct. 25 – Nov. 29; 8:30 – 11:00 am
Mondays, Oct. 25 – Nov. 29; 8:30 – 11:00 am
Mondays, Nov. 1 – Dec. 6; 1:30 – 4:00 pm
Wednesdays, Nov. 3 - Dec. 8; 6:00 - 8:30 pm

Next time you are in clinic, ask your neurologist if this is something you should attend. My answer will always be “YES!”

If this all sounds as promising to you as it does to me, and you want to better understand how this evidence program began and what the research shows, check out the Stanford Web site, or view the video reproduced with permission from copyrighted material of The Permanente Medical Group, Inc., Northern California.

Are Doctors Sometimes Fibbers?

Tue, 13 Apr 2010 16:04:00 GMT

Post written by Bradley Hiner, MD

Speaking for me and my colleagues, the obvious answer to the title of this post is “absolutely not!” Yes, my tongue is planted firmly in my cheek. But what has my dander up currently is this: doctors who claim to be something they are not.

We all accept that behaviors of healthcare professionals that are blatantly false or misleading are unethical and perhaps immoral. Claims of “miracle cures” abound; remember Laetrile, the apricot-pit cure for cancer? The proliferation of outlandish claims in the treatment of incurable illness has been matched only by the growth in the Internet. Recently, I’ve had patients come in with articles they have gotten off the Internet about some treatment being offered somewhere in the world claiming phenomenal success rates for a variety of disorders including Parkinson’s. The story of “stem cells” being offered in China, Germany and elsewhere come to mind. In the words of our 37th President, “let me make one thing perfectly clear”: These claims are complete and utter hogwash. Unfortunately for the consumer, the claims are couched in so much pseudo-science that it may be difficult to sort out. But again I reiterate: Do not believe a word of it.

To me, these types of issues are a slam dunk. The claims are total nonsense and the world would be a better place if these folks spent some time in lockup. More problematic in some ways, however, are not the outright liars (I think they’re easy to spot) but claims made by reasonable doctors that are nonetheless misleading.

For example, I just today received a flyer about a Parkinson’s seminar being given by several doctors who, right on the poster, describe themselves as “Parkinson experts”. Well, I happen to know these doctors. I think they are very good neurologists. But I also know that they are general neurologists and not specialists.

Mind you, I have all the respect in the world for generalists be they in neurology or any other field. To be a generalist, you have to know about a lot of different conditions. One day in the office you may see patients with headaches, or dizziness, or back pain, or MS, or etc., etc. You may see the occasional movement disorder patient as part of that mix, but make no mistake — it is a mix.

I am proud to say that the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin does one thing and one thing only: We see Parkinson’s and other movement disorders — all day, every day. We have three neurologists dedicated to evaluating and treating these often complex conditions. We have personnel in multiple disciplines who have completed specialized training in these conditions. We have a comprehensive approach to Parkinson’s and movement disorders that includes the only active deep brain stimulation program in the region.

This is all we do, folks. We think we do it well, and we can confidently tell you that we are in fact “experts”.

The following is feedback received for this blog:

I completely agree. You are experts in the field of movement disorders. I want to thank everyone associated with your clinic for all the hours of schooling and study to get to your respective positions. I am the beneficiary of everyones dedication and hard work. THANK YOU!! On another subject, with all our scientific advancement, we are not very far from the "snake oil salesman", that can cure everything from rheumatism to the common cold. They seem to prey on desperate people.

- Donald Bogart

Awareness Month

Mon, 05 Apr 2010 11:53:51 GMT

Post co-written by Drs. Blindauer, Hiner and Hung

For the first time, the United States has recognized April as Parkinson’s Awareness Month. The United States Senate passed a resolution March 26. We celebrate this major achievement in our efforts to advance the fight to end the burden of Parkinson's disease. Now with April upon us and this major achievement under our belt, let’s take Parkinson’s awareness to the next level.

Here are five easy ways to get involved during Parkinson’s Awareness Month:

Participate in one of the many Parkinson’s events that we have scheduled over the coming year. Mark your calendars for our annual Parkinson’s Symposium for patients and families on Sept. 25 from 9:00 am to 3:00 pm at the Country Springs Conference Center in Waukesha. Our keynote speaker this year is Eric Ahlskog, MD, PhD from the Mayo Clinic. Dr. Ahlskog has written, researched and spoken on Parkinson’s disease for many years.
Join one of our Parkinson’s support groups. About 150 people meet at these five groups each month to learn more about Parkinson’s and to how to “live well.” They enjoy the information and the sharing. Watch for information about the series of classes on Chronic Disease Self-Management: Living Well with Chronic Conditions. Vicki Conte(e-mail vconte@mcw.edu or call 414-805-8326 ), our Parkinson’s Program Coordinator has been trained as a leader and has scheduled several of these classes already. Watch for more information in our next blog.
Educate others about Parkinson’s. There are groups at your place of worship, school, workplace, senior center, club that may appreciate a speaker — such as yourself — to talk about Parkinson’s. Call our office (Vicki listed above). if you would like handouts for any such a presentation. Or, simply get in the habit of giving a brief explanation if your Parkinson’s symptoms are obvious and someone looks curious. “That darn Parkinson’s makes me freeze in doorways sometimes.” “I have Parkinson’s and my tremor is making me spill my soup.” Or, “my Parkinson’s disease makes things a bit slower from the brain to the mouth; but if you are patient, I will find my words.”
Donate to our Parkinson’s Program either for program development or research. Our second annual fund-raiser, “Moving Forward: Ride/Walk/Fun Run for Parkinson’s will take place on Oct. 10, 2010. Watch for more information on how you can volunteer, participate or donate. Call Vicki to discuss this event or to learn more about Parkinson’s research right here in our clinic. A future blog will talk about our Parkinson’s and Movement Disorders Databank for research as well as an interesting study currently being conducted using an iPod Touch to measure tremor.
Read the latest Parkinson Report — the National Parkinson Foundation’s newsletter — to learn about the latest PD research taking place around the world and to access helpful tips for living well with PD. Read our blog!!

April is the one month of the year when the spotlight is on Parkinson’s disease. We all have a role to play in making sure that it shines bright and helps spread the message of hope.

Vitamin D: The Sunshine Vitamin

Mon, 22 Feb 2010 11:16:32 GMT

The Parkinson’s and Movement Disorders Team is fortunate to include registered dietitian Sarah Zangerle, RD, CD. Sarah wrote the following article and wanted us to share it on our blog. Thanks, Sarah!

Winter has hit Wisconsin hard! The cold weather is accompanied by shorter days and minimal sunlight. Try to imagine back to those warm sunny days in June, July and August. The sunlight felt so good against our skin. Even better, the sun brought something else important to our body …vitamin D.

Since vitamin D is found in very limited quantities in the diet, the major source of vitamin D for the human body is exposure to sunlight. Exposure to UVB rays on the arms and face help us to make vitamin D. The reason why “the sunshine vitamin” has been getting so much attention lately is due to a pandemic of vitamin D deficiency across the world.

Here in Wisconsin, we are unable to make sufficient vitamin D during the fall and winter months from sunlight alone. Given our northern latitude on planet Earth, some believe that Wisconsin-ites aren’t able to make enough vitamin D from the sun during the summer months either, especially for some elderly or handicapped individuals who spend limited amounts of time outside.

What good is Vitamin D anyway?

Vitamin D performs a variety of functions in the body. Vitamin D is crucial for the formation and maintenance of bones and teeth. It is most commonly known for aiding in the absorption of calcium and phosphorus into the bone. Vitamin D deficiency is associated with increased risk for osteoporosis and has been linked to many other diseases, including increased risk of breast and colorectal cancer. Deficiency has also been linked to increased risk of developing heart disease and autoimmune disorders such as multiple sclerosis. Vitamin D receptors are also found in the brain which could link deficiency to neurodegenerative disorders including Parkinson’s disease. In a recent study, individuals with PD were found to have higher prevalence of vitamin D insufficiency compared with other healthy adults.

How much do I need a day?

During summer months, 10 to 15 minutes of sun exposure during peak sun hours (10:00 am to 2:00 pm) on arms and face provides sufficient UVB rays to make adequate vitamin D. The recommended adequate intake is 400 IU per day for adults aged 51-70 years and 600 IU for adults 71 years or older.

Where can I get it from?

Food sources are not very rich in vitamin D, but provide some supplemental intake. Milk has about 100 IU in 1 cup, canned salmon has 360 IU in 3 oz, canned tuna in oil contains 200 IU per 3 oz serving, and eggs contain 20 IU in each yolk.

What about supplements?

Most multivitamins contain between 50-400 IU per capsule; however this may not be enough to meet nutrition needs. We are still waiting for new recommendations to come out this year (2010) on how much vitamin D we need to maintain sufficient levels. During winter months a supplement of 1000-2000 IU per day with a meal should be adequate to maintain normal levels. If you are concerned, consider requesting to have your vitamin D level checked by your primary care doctor. Be prepared to take a higher dose supplement if you are deficient.

Six Word Memoirs, Continued

Fri, 12 Feb 2010 17:01:13 GMT

Since posting the post below on the Six Word Memoir, our patients have contributed a few more:

Other symptoms:

The facade is not the fellow.

Strength and encouragement:

My face lies. Ask for truth.

Fear and questioning:

I am not who I was.

The following is feedback received for this blog:

Enjoyed all the six word sentences, thanks everyone.

- Richard Secklin

New Year Encouragement

Tue, 26 Jan 2010 13:14:25 GMT

Post written by Dr. Serena Hung

“Life is full of special moments. And the key is to be present when they happen. These are the little victories, that when added up, signify a life well-lived. When you face a challenge like Parkinson’s disease, where so much of your capability is slowly stripped way, it is even more imperative to acknowledge — and to celebrate — these moments.”

- Davis Phinney

I started my new year enjoying some special moments in Costa Rica with my husband, exploring nature and enjoying the sun, the sea and the rain forest. I reminded myself that I don’t have to keep my nose so closely to the grindstone all the time. I want my life to reflect a certain well-roundedness that can’t be achieved by only identifying myself as a neurologist. My goal is to have this “life well-lived” that Davis Phinney speaks of.

I want to encourage all of you to think about what a life well-lived means to you and how are you going to achieve it. For one of my Parkinson’s patients, Gottfried Georgi, 71, a life well-lived means working 40 hours a week as a volunteer at Racine United’s HS Automotive Program. Check out his story at the Racine Journal Times.

Oscar Wile said, “I don’t say we ought to misbehave, but we should look as though we could.” It’s that “twinkle in the eye” spirit that I see in my patient Paula Moore. Her husband, Jim, doesn’t think she’s ever “misbehaved,” but she has that open and honest and inviting look that puts people at ease and makes them want to be with her. Paula attends the Parkinson’s support group at Small Stones on the third Tuesday of each month and she always leaves the meeting with a new friend — or two. At over 80, with a variety of health concerns, Paula could be grumpy and closed off. Instead, she wears bright colors, smiles constantly, asks about people’s children and grandchildren, and encourages, encourages, encourages others to find those small victories of which Davis Phinney speaks.

I am very proud of my patient, Sr. Ann Bisek. She was initially devastated by the diagnosis of Parkinson’s disease. It took her the better part of a year to adjust and to regain her confidence. In the process, she has discovered new things about herself — like she can dance. Sr. Ann attends the Young Onset support group every month. She also attends Moving and Grooving: the Parkinson’s Dance Class and she dances faithfully, every week. Sr. Ann might not agree with Henri Matisse about original sin but she definitely agrees about the joy in dancing!

“Ever since there have been men, man has given ‘himself’ over to too little joy. That alone, my brothers, is our orginal sin ... I should believe only in a god who understands how to dance.”

- Henri Matisse

Six Word Memoirs

Wed, 10 Feb 2010 11:37:39 GMT

Have you heard of the six word memoir? Once asked to write a full story in six words, legend has it that novelist Ernest Hemingway responded: "For Sale: baby shoes, never worn." That certainly tells a whole, painful story.

In this spirit of simple yet profound brevity, the online magazine Smith asked readers to write the story of their own lives in a single sentence. The result is Not Quite What I Was Planning, a collection of six-word memoirs by famous and not-so-famous writers, artists and musicians. Their stories are sometimes sad, often funny — and always concise.

We thought it might be interesting to ask our patients to write a six word description of life with Parkinson’s. Here are some terrific entries.

On tremor:

Now I shake. It’s still me.

Was originally just a pinkie tremor.

Great cooks improvise. Shake ... can't whisk.

Other symptoms:

Frozen not cold. Come on feet.

Question. Wait, wait, wait, wait. Answer.

Bradykenisia, hypomimia, orthostatis. Come on, doc!

locking finger ... doctors, tests ... answer, questions

Scuffle, stumble, fumble, but never grumble.

When I fall, I fall hard.

Here’s a series that might be saying that Dairy Queen can cure a broken heart:

You Don’t Die From Parkinson’s Disease ....

A Broken Heart Can Kill You ....

Help! Call 911 … Or Dairy Queen!

Some understandable fear and questioning:

married, mom, 35, PD ... what's next?

It's me, frightened and stuck inside.

Some strength and encouragement:

My name is Kathy, not Parkinson's

Still me. Have hope. Keep moving.

life changes, keep moving, live now

move for those that can not

Parkinson's is the enemy. Let's fight!

We’d love to hear your six words on Parkinson’s. Respond by clicking on the feedback button below or send them to our Parkinson’s and Movement Disorders Program Coordinator, Vicki Conte at vconte@mcw.edu.

Team Building and Creative Program Development

Wed, 08 Apr 2009 10:12:14 GMT

Post Written by Karen Blindauer, MD

Twice every month our Parkinson’s team holds a meeting during lunch to discuss topics to improve our overall group performance. All three of us movement disorder neurologists attend, along with our nurses, physical, occupational and speech therapists, our registered dietician, social worker, program manager and program coordinator and one or two of the administrators heading up the neurology department. We report to each other on research updates and what we've read in the medical journals, learned at seminars, seen in clinic and done in our community outreach work. We discuss and review our program’s strengths and weaknesses and brainstorm to find ways to further improve an already outstanding interdisciplinary program that serves our Parkinson's disease patient population.

In addition to performance improvement, we have met to work on grant applications for research and program funding. We have met to collaborate on support group and symposium presentations. We even meet to discuss topics for this blog and who wants to write about what. All of this is an amazingly collegial process. I am truly lucky to be able to work with such a great team of people.

We are increasing our collaboration with the basic scientists in other departments at the Medical College of Wisconsin in the area of translational research. This type of work is focused on bringing new treatments from the early laboratory studies to research in people.

We have a weekly case conference where we discuss potential candidates for Deep Brain Stimulation (DBS). We view videos of on-off testing for each candidate. We review the neuropsychological test results and reports. With this data, our team decides as a group on whether or not DBS is the right choice for a given individual. We also review tough cases of the week and brainstorm together on diagnosis and treatment possibilities. If I were a patient in this program, I would be comforted by the fact that so many people are giving so much thought and consideration to my care.

I am always looking for innovative ways to improve function and quality of life in my patients. This topic often turns out to be surprisingly fun. This was never more evident than a recent Educational Enrichment luncheon during which we all got up on our feet and got moving. Dee Schwaiger, Tom Thoreson and Susanne Carter, community exercise and dance professionals, joined our team for the day and enlightened us about the role of dance for people with Parkinson’s (PWP). They have been collaborating in the development of a dance class for people with Parkinson's. Recent research indicates that dance may be a good modality for improving flexibility, balance and mood for PWP.

Dee, Tom and Susanne wanted us to see/hear/feel/experience what their class would be like for our patients. Amazingly we all got up and danced. For almost an hour we kept moving, and actually felt invigorated. I didn't realize I was pushing myself because I was having too much fun. I was able to see/hear/feel/experience the fact that this dance class can be excellent for PWP. I learned from Tom, Dee and Susanne that every move can be adapted to meet the individual’s needs and ability.

The Parkinson's Dance Project will kick off with two separate six-week classes with additional locations to be added in June.

Thursday, April 16, 2:00 pm at the Wisconsin Athletic Club, Wauwatosa
Friday, April 17, 2:00 pm at the Jewish Community Center, Whitefish Bay

The cost is $55 for six weeks. The class meets once per week, for 1 hour 15 minutes per session.

Anyone who is interested should call Dee or Tom or Susanne at 262-241-3822 to register. Check with your doctor if you have any exercise restrictions that would prevent you from participating.

Parkinson's Disease and Dance

Wed, 23 Dec 2009 10:38:50 GMT

Post written by Dr. Serena Hung

Moving and Grooving: The Parkinson’s Dance Program starts winter classes on Jan. 11, 2010. This adaptive program has been developed by dance and exercise professionals. Whether you have tripped the light fantastic or never danced a step in your life, if you have Parkinson’s disease (PD), this class is for you.

The symptoms of PD are different for everyone. Some people have the telltale symptoms of “facial mask”, tremor of a limb or jaw, shuffling gait, freezing, or balance problems These can be accompanied by depression, lack of socialization and a poor self image. It becomes harder to do activities of daily living, like putting on your coat or fastening buttons. Often the voice softens or becomes raspy so people around you can’t hear you any more.

This is where DANCE comes into play. When taught by people who are aware of the myriad of possible deficits, dance becomes an important adjunct to other therapies for PD.

When you are in a PD dance class or participating in any form of dance, you are so busy that you do not have time to focus on your disabilities. The music and the social interaction are uplifting and thus work to decrease depression. Any form of dance uses all parts of your body in beneficial ways that you wouldn’t think possible. It provides your body with all sorts of rotation, contra lateral and co- lateral activity. Dance is great for cardiovascular and pulmonary endurance. Spatial brain function may also be challenged. The PD dance instructors also encourage verbalization and facial expressions with the use of appropriate songs and activities. Large mirrors for visual feedback can be very helpful. PD dance class improves your ability to do ADLs and many other activities by increasing your range of motion. Mental alertness is stimulated.

Remember, you do not need any previous dance experience or even a partner. We are fortunate to have the MOVING AND GROOVING dance program in the Milwaukee area. See the attached flyer.

The following is feedback received for this blog:

Parkinson's dance! It's a growing movement! Possibly of interest to you:
www.parkinsonsdance.blogspot.com

- bob dawson

A Successful Symposium

Wed, 20 May 2009 16:37:52 GMT

Post written by Dr. Karen Blindauer

The "Moving Forward" bloggers at the symposium: Dr. Serena Hung, me (Dr. Blindauer) and Dr. Bradley Hiner

I have been asked by a number of people with Parkinson's diseare (PD) or their family members to write about our second annual Parkinson’s Symposium and touch on the highlights of the day. It is with great delight that I reflect on a very successful and informative educational event. More than 350 people were in attendance on a not-so-pleasant, rainy Saturday.

Dr. Safwan Jaradeh, chairman of Neurology at the Medical College of Wisconsin, and Christopher Sheridan, RN, PD program manager, kicked off the program with a warm welcome and introductions and an overview of the day's events.

Vicki Conte, coordinator for the Parkinson's and Movement Disorders program, was her usual encouraging self.

They keynote speaker was Dr. Walter Rocca, professor of Epidemiology and Neurology at the Mayo Clinic College of Medicine. Dr. Rocca’s talk was entitled “Environmental Risk Factors and Genetics of Parkinson’s Disease.” He gave a fantastic and very clear summary of what is known today about these issues in PD. He described risk factors for PD including advancing age, male gender, positive family history, prior severe head trauma, exposure to certain environmental toxins, and inheritance of certain genes. It was reassuring to learn that genetic forms of PD are rare and that having a positive family history of PD does not mean one is destined to develop PD.

The average person has a lifetime risk of developing PD of about 1 to 2 percent. With a positive family history, that risk goes up to about 4 percent, which is higher, but clearly still a small risk. Since the population is aging and everyone is living longer, the prevalence of PD will increase. This is an effect of the population having more older folks around and not a sign of a PD epidemic. He did point out that there are many different causes for PD in each individual patient and many more causes in the population at large. That is why it has been so difficult to find the cause of PD in order to find a cure. He noted there is no definite proof of any vitamins or medications preventing PD, but that exercise has been shown to be beneficial in PD. There may be some reduced risk of PD in smokers and coffee drinkers, but the cause and effect relationship here is not clear. He therefore recommended that if someone does smoke they should stop because of all the negative health effects, and that someone should not start smoking because they have PD.

The next speaker was Dr. Mark Rusch, psychologist for the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin. He gave a very clear and comprehensive review of cognitive and emotional changes in PD. He discussed depression, anxiety, apathy, fatigue, sleep disorders, and cognitive impairment including problems such as dementia. He reviewed how these conditions manifest in PD and how these conditions can be treated. It is very helpful for all to learn that PD goes beyond the tremor and movement disorder. Addressing these non-motor symptoms improves the overall well-being and quality of life for people with PD.

After these in-depth and informative lectures, we were treated with an entertaining introduction to the Parkinson’s Disease Dance Project. Dance instructors Tom Thoreson and Susanne Carter led their class of students in a fun and energizing dance to the music “Singing in the Rain.” The students are people with PD who are improving their mobility, flexibility, and balance through dance. It was clear that they were having a lot of fun while working hard. I was able to join in as an audience participant, and have to say, dance is a fun way to exercise.

Susanne Carter leads the group in movement and stretching exercises.

After the lunch break we reconvened with an excellent overview of the rehab resources that are available at Froedtert & The Medical College. Physical therapist Jessica Doine, occupational therapist Bill Reinhard, and speech therapist Laurie Dulitz all clearly defined the role of therapies in improving function, safety, and quality of life in PD. They reviewed the goals in therapy for early and later stages of PD and taught us about the Move BIG and Think LOUD strategies to improve mobility and communication. We are truly grateful to have such talented and enthusiastic therapists on our comprehensive PD team.

We had the opportunity to meet our registered dietician, Sarah Zangerle, who explained dietary needs specific to people with PD.

Our patients with PD also have the benefit of complimentary services in the community to continue on with improving the balance, strength, mobility, and voice after the therapies have been completed. Bonnie Jean Barczak, music therapy director at the Wisconsin Conservatory of Music, reviewed the merits of exercising the voice through song to improve volume and articulation in PD. Pat Culotti, Tai Chi instructor, reviewed the role of her program in helping people with PD. She demonstrated a few basic exercise moves, with audience participation. The stretching and movement really felt good. JT Mathwig, PT, discussed the benefits of PD Treadmill Exercise Class, which has been getting great reviews from our patient population. Dee Schwaiger gave additional information about the PD Dance Project, which is rapidly growing in attendance.

Last but not least, my team, the Parkinson’s and Movement Disorders neurologists, gave presentations on a smorgasbord of PD topics in just over an hour. What a feat!

Dr. Serena Hung discussed some of the hottest topics in PD research and reviewed how to find good information on the Web.

Dr. Hiner gave a good review of the Braak staging system in PD that shows how changes occur in the nervous system outside the dopamine pathways. This explains why some of the non-motor symptoms like constipation, sleep problems, anxiety, depression and cognitive impairment occur in PD. He then reviewed the recent scientific publication showing the superior benefits of DBS over the best medication adjustments in the treatment of PD symptoms. He also shared a video from a patient who had successfully undergone the DBS, showing the dramatic change in his PD symptom control from before to after the procedure.

I reviewed the changing philosophy in the field of neurology on when to start medication in early PD, what medication to start first, and the pros and cons of these options. I also discussed the “levodopa phobia” phenomenon and how it can negatively impact patients who are afraid to take levodopa when they need it.

All in all it was a great day. The speakers were excellent, the information presented was outstanding, the audience participation and questions were delightful and insightful. I felt energized and excited about my mission to help people with PD and their families. As we all departed, the sun broke through the clouds in a sort of symbolic way, indicating the day had been successful, enlightening and uplifting.

Symposium participants get involved .

Deep Brain Stimulation and the Placebo Effect

Mon, 30 Mar 2009 09:08:04 GMT

Post Written by Bradley Hiner, MD

Welcome to our first installment of Moving Forward, the Parkinson’s Disease and Movement Disorders blog. We hope to cover a broad range of topics relating to these conditions, and hope to generate discussion and feedback from our readers.

As this is the first in our series, let’s start off with a bang:

“Deep Brain Stimulation? I think it’s all a placebo effect.”

A reporter for a large local newspaper interviewed various Parkinson specialists about deep brain stimulation (DBS) after a well-designed, well-executed national study found that DBS was superior to the best medical management in selected patients with Parkinson’s. One of the doctors interviewed stated he thought the effects of DBS were “all placebo.”

This is simply wrong.

The whole point of the study was that this is not a placebo effect, in fact just the opposite. These days we call this “evidence-based medicine.” It’s not what I think I know, or what I’ve been told by someone else; it’s what the EVIDENCE shows.

The shame of it is that folks with PD, should they be under the care of a physician like that, will simply not be given the straight story. It will not even be mentioned as an option, which is too bad. While DBS can be associated with side-effects, the study also showed that 99 percent of the side-effects have resolved at the 6 month mark.

Don’t get me wrong — DBS is not for everybody. Our job is to make sure that proper patient selection takes place so we can be confident when we move in that direction. But not offering it at all in this day and age is equivalent to telling a heart patient that he or she shouldn’t have a pacemaker placed because “it’s a placebo effect.”

Your doctor needs to be your advocate. Our job is to stay on top of all the latest research and be able to offer non-biased information so that patients and families can make informed decisions about their health care.

Medicine is a funny thing. What is true at one point in time becomes obsolete with acquisition of new knowledge. In his 1817 publication, “An Essay on the Shaking Palsy,” Dr. James Parkinson not only identified the clinical features of the disorder that now carries his name, but also speculated on the treatment for the disorder. He suggested that blisters be raised on the back of the neck, presumably to let the evil humors out that were causing congestion of the brainstem. We’ve come a long way, and there’s a long way to go yet. But nothing could be more exciting and fast-paced than the field of Parkinson’s and Movement Disorders. We doctors are obligated to keep up with advancements in the field so we can offer you the best opportunities to make informed decisions regarding your health care.

The following is feedback received for this blog:

Thank you for the well written and insightful article you wrote concerning DBS and the Placebo Effect. What Parkinsons patients are good candidates for DBS? I understand that that anyone that can still control Parkinsons effectively with medication would probably not need to choose DBS. What Parkinson characteristics make for a good DBS candidate. While 99% of the side effects are improved when the occur do occur after DBS, how severe is the 1 % that is not improved. How often is the operation not successful (little or no improvement)? Not too long ago I read an article in the Milwaukee Journal in which a Dr. Nauseda from Mount Sinai Hospital stated that DBS was no more effective than medication if the medication is prescribed properly. I have read numerous articles, however, where patients were improved after DBS and some dramatically. Can some patients actually be worse after the operation? Do most insurances advocate and support DBS?

Thanks again for the article.

- Randy Samborski

Thanks for your excellent questions. In a nutshell, DBS is an option for patients whose quality of life is adversely affected by their Parkinson's disease and the medications aren't helping like they used to. A phrase I often use is, "taking more medication with less benefit and more side-effects." That is a pretty broad generalization, and we actually go through a very thorough process to ensure that if the patient goes through with DBS that we can expect good results.

Regarding the statement, "DBS was no more effective than medication if the medication is prescribed properly", the whole point of the recently published study I alluded to (Journal of the American Medical Association, Jan. 7, 2009, pp. 63-73) was that in properly selected patients, DBS is indeed superior to medication. Specifically, after studying 255 patients equally matched and distributed between surgery and medical management, "71% of deep brain stimulation patients and 32% of best medical therapy patients experienced clinically meaningful motor function improvements," resulting in improved quality of life. For you Parkinson patients, this translated to an average gain of 4.6 hours of quality "on" time compared to pills.

Regarding side-effects, the most common is infection (5-10%), which is usually responsive to antibiotics. On occasion we have to remove hardware, usually the battery — which can be replaced later without having to change the DBS lead itself.

Finally, this procedure is approved by Medicare and almost all insurance carriers. I can't think of the last time we had a denial.

Thanks again for your questions, and I'd welcome the opportunity to meet with you or anyone else out there who has questions about DBS.

Brad Hiner, M.D.

GINA

Tue, 28 Apr 2009 15:34:27 GMT

Post written by Dr. Serena Hung

Have you heard about GINA recently?

GINA is not a person. It is the acronym for Genetic Information Nondiscrimation Act that was signed into law in May 2008. It has created a lot of excitement in the medical community. In my practice, the most affected group would be the patients with a family history of Huntington’s disease. As you may or may not know, the son or daughter of a patient with Huntington’s disease has a 50 percent chance of inheriting the disease. Because of the high chance of getting Huntington’s disease, there is a chance of discrimination based on family history. Some people choose to get tested for the gene for Huntington’s disease and for those who test positive for the gene, even though they may not have any symptoms of the disease at the time, may also face discrimination.

Are you familiar with the American with Disabilities Act? GINA has certain similarities to it, especially in the proposed penalties for violations. GINA stipulates that no one should be discriminated against based on genetic information or family history. No one should be denied health insurance because of genetic information or family history, and may go as far as saying people with abnormal genes or a positive family history for genetic diseases should not be charged a higher health insurance premium. Also, employers will not be allowed to obtain information about family history. (It is each individual’s prerogative to disclose information to his or her employer, but he or she should not be required to do so.)

Note that this act does not cover other kinds of insurance such as life insurance, disability insurance or long-term care insurance. Insurance companies still have the right to deny coverage in those instances. However, to a lot of people, not having to fear that they will lose their health coverage is a major breakthrough. In fact, in one of the studies done by the Huntington Study Group, it was found that in the United States, people at risk for Huntington’s disease frequently ask that their genetic testing be done separately from their usual health institution for fear that this information will be accidentally disclosed. This is not the case at all in Canada where all Canadian citizens and legal residents have universal coverage and no one is ever denied health care. GINA offers some protection against the loss of health coverage. The people who fought for GINA really wanted the coverage to go farther, but at least this is a first step.

Where does this go from here? The section of the law relating to health coverage generally will take effect between May 22, 2009, and May 21, 2010. The sections relating to employment will take effect on November 21, 2009. Note that in many states, there are already provisions against genetic discrimination, but the levels of protection vary widely. All companies that are subject to GINA must, at a minimum, comply with all applicable GINA requirements, but may also need to comply with more protective state laws. Also note that GINA doesn’t cover companies with fewer than 15 employees.

For those of you who don’t have a family history of Huntington’s disease, there are other diseases that are covered by GINA. For example, people with a family history of breast cancer, familial polyposis, which carries a high risk of colon cancer, and mitochondrial diseases such as MELAS are all covered under GINA.

For more information, you can go to:
http://www.genome.gov/24519851

The following is feedback received for this blog:

Looks like the co-founder of Google, Mr. Sergey Brin, is interested in Parkinson's disease funding research too !

http://too.blogspot.com/2008/09/lrrk2.html

- Gaurav Parikh

Ellen Jante, Recipient of the Davis Phinney Foundation Local Hero Award

Fri, 20 Nov 2009 16:08:24 GMT

Post written by Dr. Blindauer

The Davis Phinney Foundation brought their Victory Summit to the Milwaukee area in October. One of the highlights of these Summits is the Local Hero Award. Our dear friend, Ellen Jante, wife of our patient, Dale Jante, received this award.

Ellen Jante, 61, has been an educator, advocate and inspiration to the Milwaukee-area Parkinson’s community for several years. Following her husband Dale’s Parkinson’s disease (PD) diagnosis more than 20 years ago, Ellen has used her energy and determination to touch hundreds of lives, whether tirelessly speaking to physical therapists and others about PD care, advancing public awareness by recruiting experts to educate local residents with PD and their caregivers on ways to live better with PD today, or successfully advocating for expanded coverage of PD treatment costs.

Ellen has served as co-facilitator of the West Allis Memorial Hospital Support Group for 10 years. She has spoken about Parkinson’s disease to audiences large and small, including groups of physical, speech and occupational therapists to teach them the skills of dealing with their patients on a daily basis.

As a passionate advocate, Ellen championed a major change in Medicare reimbursement for people with PD in 2002 as she successfully led an effort to secure Medicare coverage for her husband’s deep brain stimulation (DBS) surgery. Since then, many patients across the country have benefited from DBS without personally bearing its high expense.

Ellen believes in exercise and encourages people with PD to attend a Parkinson's exercise class twice a week. She promotes training caregivers to follow through at home with exercises conducted during therapy treatments.

Here is some media coverage about Ellen:

BizTimes Daily

Racine Journal Times

Research Updates

Thu, 28 May 2009 13:41:33 GMT

Post written by Dr. Serena Hung

Research projects currently at the Medical College of Wisconsin and what may be on the horizon.

Even though the majority of the patients who come to see the movement disorders specialists are patients with Parkinson’s disease, we do have patients with various other disorders in our clinic. We have been fortunate to be able to offer clinical trials to patients for reasons I mentioned in an earlier blog.

Here are some of the ongoing clinical trials within the Parkinson and Movement Disorders Program:

For patients with Parkinson’s disease

We are one of the sites for a new device made for deep brain stimulation. The target in the brain is the same as the target we normally use. However, the device is new and may or may not offer some benefit over the device currently on the market. That’s something we don’t know and part of the reason why we do clinical trials.
Another trial is ongoing for early Parkinson’s disease patients. Their disease severity has to be mild enough that they are not on any medications for Parkinson’s disease. This is using high dose coenzyme Q10 for possible delaying of disease progression (neuroprotection)
For patients with family members (parents, brothers, sisters) with Parkinson’s disease, there is a trial which require a one-time visit to explore the genetics of Parkinson’s disease

Tremor

We are performing a trial using deep brain stimulation in patients with essential tremor. The requirements are quite specific — patients have to have face, head, voice or trunk tremor in order to qualify for this trial. They can also have hand or leg tremors in addition to the midline tremors. The target we are using in this trial is novel and we would like to see if it works better than the existing target for tremors involving midline structures.

Huntington’s disease

We are not recruiting at this time, but we have been following a group of patients for 10 years in a trial called PHAROS. We have gained some insight into the progression of this illness in the days prior to people starting to have symptoms and thanks to our patients who have been extraordinarily patient (10 years is a long time) and enthusiastic, we may be able to use this information to plan future clinical trials.

We are pursuing clinical trial opportunities for other trials in Parkinson’s disease and Huntington’s disease. One of the most important things for our group is that we can offer opportunities to participate in research studies to our patients and we are constantly on the lookout for things that may make an impact on understanding these diseases or treating them better. If you are ever interested in finding out about research opportunities, if you are one of our patients already, ask us when you come see us. We are always happy to tell you more. If you are not one of our patients currently but you are interested in participating in research, you don’t have to leave your current doctor to engage in research. All you have to do is call our research coordinator, Jo Bergholte, MS at 414-805-5210 and go from there. Frequently we can work with your doctor to ensure they understand what we are doing here and update them on any changes.

How to Have a Productive Clinic Visit

Tue, 05 May 2009 15:27:19 GMT

Post written by Dr. Karen Blindauer

Sometimes we hear about patients leaving an office visit and saying they didn’t really understand or remember everything that was discussed at the visit or they didn’t get their questions answered. That to me sounds like an unproductive doctor visit.

It can be helpful to have a family member come along to the visit to have another set of ears hearing the information. I also like to type up and print out an explanation of medication changes we are making, the reason behind it, the expected benefits, and possible side effects. I strongly believe that patients do better when they are well-informed. Fortunately at the Froedtert & The Medical College of Wisconsin Parkinson's and Movement Disorders Program clinic, we have many other resources for patient education to supplement the information given at the doctor visit. We have brochures and handouts, educational lectures, informative Web sites, productive and educational support groups, and a fantastic patient and education coordinator named Vicki Conte.

I like to give information and have my patients well-informed. On the flip side, however, I need good information from my patients in order to take better care of them. Sometimes a patient asks, “How Do You Think I’m Doing?” I may not have seen you for three to six months, or maybe even a year. It always helps for you to tell me how you think you are doing. The clinic visit is just a snapshot of how you are functioning. I may be seeing you on a good day or a bad day. It is very important for me to learn how you are doing on an ongoing basis during the times I am not seeing you.

Your friends and family may have a different perception of how things are going. Their input can be very important too, whether it is the same or different from yours.

I, of course, will have many questions for you. Asking about mobility, walking, falls, dizziness, coordination, mood, sleep, memory and thinking, bowel and bladder function are all part of a thorough assessment of your Parkinson’s disease. And then there is the good old UPDRS (Unified Parkinson’s Disease Rating Scale). Patients say, “every time I come, the doctor has me tap my fingers and feet and walk down the hall.” As repetitious as it may seem, the UPDRS is one tool I use to be able to answer the question, “how do you think I’m doing?” I can assess your tremor, your rigidity, your slowness of movement — even your balance — using the UPDRS. I come up with a score that is an objective measure to compare from visit to visit.

Some patients may fluctuate during the day and have good times and bad times. We call these motor fluctuations. A good part of the time, these changes relate to the Parkinson medications kicking in and wearing off between doses. Knowing approximately, or more precisely, when these fluctuations occur during a day can help me to better adjust your PD meds to get the smoothest and best symptom control throughout the whole day. I sometimes will ask my patient to keep a symptom diary or journal for a few days, where they would record when they take their meds, when they kick in, when they wear off, when and what they ate, when they had good function or bad function, or when they had dyskinesias. I don’t want to encourage all — or even most — of my patients to become too analytical about the hour-to-hour description of their days and nights. Focusing too much on the symptoms can be distracting or detract from your usual activities. However, for a “fluctuator” this information can be incredibly valuable at the doctor visit.

Some patients may have dyskinesias which are wiggly movements that are a side effect of Parkinson medications at their peak level and different than the more rhythmic tremor that occurs when the medications wear off. A patient may call and say “I am shaking all over all the time”, and they may be having tremors or they may be having dyskinesias. I or my nurse will dig into this further to figure out which of the two problems it might be. A problematic tremor might need a med increase; troublesome dyskinesias may need a med reduction. So, you can see how good or detailed information makes a difference.

You may have a lot of questions or concerns, but when on the spot, your mind goes blank. That is where a list of questions comes in handy. The “list of questions” is something you can create between visits. Keep it on the fridge or the night stand. When a question pops into your head that isn’t urgent, jot it down. Prioritize the list along with your spouse, child, friend, so that you have one to three “chief complaints” or pressing questions to start off with. The list will help to keep us both on track. While we try to get to all your concerns, time may run out before covering everything.

A current list of your medications including the dosage is crucial. Sometimes other doctors prescribe things that may interfere with your Parkinson’s disease itself or with your Parkinson’s medication. (Please see our “To Your Health” bulletin that lists contraindicated drugs.) I really need an accurate list of all of your medications.

The visit will conclude with my reiterating my assessment of your neurological health and how I think you are doing. I will discuss any medication changes we might be making, and the pros and cons of that. When you check out in our clinic, you will be given a listing that includes those med changes. You will also have my typed instructions with more details to help you remember. I may have you call to check in with my nurse on how you are doing with the medication change. I may make other recommendations such as starting an exercise program or attending a support group. Vicki Conte, our Parkinson’s and Movement Disorders Program Coordinator is here to assist in getting you plugged into a variety of community options. It may be months until your next clinic visit, but you should never feel that our team isn’t available to you between visits.

Big Weekend for Parkinson's Awareness!

Thu, 08 Oct 2009 11:48:01 GMT

Post written by Dr. Bradley Hiner

The Davis Phinney Foundation is bringing their Victory Summit to the Milwaukee area on Saturday, Oct. 10. They have closed registration — having reserved spots for 550 people! They will videotape the event and make it available for no charge through their website www.davisphinneyfoundation.org.

The fact that 550 people are coming out for this, tells me something. It tells me that people with Parkinson’s are anxious to learn about ways they can deal with the disease through exercise. That’s the mission of the Davis Phinney Foundation — to teach people with Parkinson’s about the value of exercise and let them experience small victories every day by actually implementing their exercise program.

The day after the Summit, we will be giving folks a chance to actually act on this message. We are putting on Moving Forward: Ride/Walk for Parkinson’s on Sunday, Oct. 11 at the beachfront of Pewaukee Lake. You can still register to ride or walk on at www.davisphinneyfoundation.org. I’m riding. So is Dr. Hung. Dr. Blindauer is walking. Most of our Parkinson’s and Movement Disorders team is participating in some way. Many of our colleagues in Neurology and throughout Froedtert & The Medical College of Wisconsin are either riding, walking, volunteering or donating. You can even register the morning of the event.

I am most impressed by our patients that are riding, walking, volunteering and donating. George, a young onset patient, has gotten his company to donate all the post-ride food and his wife and kids and friends are cooking it and serving it. George has been training to ride the 100K. That’s farther than I am going to attempt!

Bill has raised $2,000 in sponsors and almost $4,000 in donations. His wife has put together all the registration volunteers. Bill has been training to do the 14 mile route around the lake.

Maureen is treating the event like a family reunion. She has riders, walkers, volunteers and donors from a four-state area. Maureen and her kids will walk the two miles; but I won’t be surprised to see her riding in the future. She is the front-runner for winning the top fund-raiser’s prize of a custom fit Road Bike donated by Transition Cycle and Training.

There are many, many more patients and families that are getting behind this event. Some are coming to see “the first family of cycling:” Davis Phinney and his wife Connie Carpenter — both Olympic Medalists — and their son, Taylor Phinney, cycling phenomenon. But most are coming because they believe exercise is an important component to a healthy, happy life. And yes, a person with Parkinson’s can have a healthy, happy life. I meet them every day in the clinic and I will be seeing hundreds of them this weekend. I hope you can join us.

Exercise, Davis Phinney and Victories

Fri, 11 Sep 2009 14:50:30 GMT

Post written by Dr. Karen Blindauer

This isn’t the first time I’ve blogged about exercise, and it won’t be the last. The human body is meant to exercise — it keeps our muscles, including our heart, strong and it releases the chemicals our brains need to be happy and healthy.

As a career athlete, Davis Phinney has experienced the benefits of exercise for his entire life. As an elite and decorated American cyclist, including winner of an Olympic medal and a number of legs of the Tour de France, Mr. Phinney has experienced the joy of victory many times. Today, as a person with Parkinson’s, Davis Phinney spends his time encouraging other people with Parkinson’s to exercise and to find their own victories every day. “It’s not the size of the victory, but the recognition of it that counts. The motivation behind it. The inspiration it can provide to others. In the end, it’s about what we can do today to improve lives. And that is a victory in itself, “ he tells us.

There have been numerous studies showing that people with Parkinson’s disease who exercise have a better quality of life as well as better walking, balance, strength and flexibility than those who do not exercise. The Davis Phinney Foundation recently conducted an online survey with 100 respondents. It’s a “snapshot” of the folks who were checking his Web site and willing to do that survey; therefore it can’t be generalized to the entire PD population. The survey does, however, illustrate the gap between the importance that people with PD place on exercise and the information provided by their neurologists. The findings show that while 81 percent of people with PD said they believed that exercise can slow disease progression, only 40 percent reported discussing exercise with their physician within six months of diagnosis. Almost 20 percent of people said they never discussed exercise with their physician. Other studies have even less impressive results. One indicates that only 5.6 per cent of survey respondents received information about exercise from their physicians.

Let me be among the group of physicians who informs, promotes, encourages and even prescribes exercise as a treatment modality for Parkinson’s. Where appropriate, step one can be a prescription for a therapy evaluation that can lead to a course of physical, occupational and speech therapy. Those therapy sessions will only be of long term benefit if you have an exercise program in place for health maintenance following therapy. For those folks who really don’t require formal therapy, we need to identify and commit to an exercise program. Some people benefit from and enjoy group classes. Others who are motivated and disciplined may come up with a very good regimen that they stick to on their own.

Some people may be discouraged that they can’t do a half hour or hour of exercise at a time or can’t walk a mile from the get go. Getting in shape takes time. Doing a little bit of exercise and building endurance gradually is much better than not exercising at all. Exercise does not have to cost money either. You can walk in your neighborhood or walk at the mall when the weather is bad. You can watch and participate in exercise programs on TV like Sit and Be Fit. You don’t need to buy expensive equipment. You can use a soup can as a light dumbbell, or use a purse for a heavier weight to lift. (Be careful not to overdo it with this one. I’ve seen some big and heavy purses in my clinic.)

Many of my patients ask me which exercise is best for PD. The most honest answer is that we don’t really know for sure. My personal opinion is that someone should pick an exercise or physical activity that they enjoy so it is easier to stick to.

We are fortunate in the Greater Milwaukee Area to have numerous exercise classes specifically geared to people with Parkinson’s. Among the best is the exercise class developed by physical therapist, Teresa Steffen, PhD and replicated in 7 locations. There is also an excellent yoga class for Parkinson’s at the Milwaukee Yoga Center and the Moving and Grooving Parkinson’s Dance/Exercise classes in four locations. Contact Vicki Conte our Program Coordinator at 414-805-8326 for more details.

If you are looking for some great information and inspiration on Parkinson’s and exercise, please sign up to attend the Oct. 10 Victory Summit sponsored by the Davis Phinney Foundation in collaboration with Froedtert & The Medical College of Wisconsin. The event, held from 9:00 am to 3:00 pm, is free of charge including lunch with national speakers including Mr. Phinney. If you are looking for an opportunity to spend time exercising outdoors with me, my colleagues, family and friends and Davis Phinney, please register for Moving Forward: Ride/Walk for Parkinson’s on Oct. 11. Information on both events can be found at www.davisphinneyfoundation.org. We wouldn’t normally do events two days in a row but we wanted to take advantage of the opportunity to experience some “daily victories” with a great Parkinson’s role model.

23andMe

Mon, 17 Aug 2009 10:54:20 GMT

Post written by Dr. Bradley Hiner

Some of you may have heard of this: there is a high-tech, “personal genetics” company called "23andMe" in California that wants you to spit in a cup, send it to them and for a fee will run a series of genetic tests on your DNA (we all have 23 chromosomes, hence the name). It is being pitched as “helping to advance the cause of science”, and is being sponsored by the Michael J. Fox Foundation no less to “help find the cure for Parkinson’s”.

My opinion? Let’s slow down and take a look at a few details:

Bear in mind that this is a privately held company that will now have possession of your DNA, and can do whatever research in the future they want to. It can be stored in perpetuity, and used for whatever purposes they want.
One of the co-founders of the company is the wife of Google co-founder Sergey Brin. Google is an investor in the company. Google may be many things (like a great search engine) but do you want them owning your DNA?
A few basics about genetic testing in Parkinson’s:
1. While there have been genes discovered that are associated with PD, the fact is that the vast majority of patients do not inherit it nor do most cases “run in families.”
2. The known genes that may cause PD are quite rare, and even in those cases, there may be a difference in gene expression, something known as variable penetrance and expressivity. That means even if you are one of those rare individuals who have the gene, there’s no way of knowing if or how it will be expressed.
So you spit in the cup, pay your money, and wait patiently by the mailbox. In the mail some time later you receive an official print-out of your genetic profile. Let’s say you are positive for one of the genes known to cause PD (for example, LRKK2). Now what? Is there anything you can do about it? Is it going to change your treatment? Are you now going to disclose this information to your family, so they can worry about inheriting it? How far along the family tree will you have to alert people? How is this information going to affect your children, and their children? Will the grandchildren need to be worried about it?
The fact is, until we have a treatment that is “neuroprotective,” i.e., can prevent Parkinson’s disease and its progression, there is little to no value for you, the patient/consumer to have this kind of information. Maybe someday, but not now.
Finally, the test will be scanning your genes for many things, not just those related to PD. What are you going to do if you get unanticipated results, or results that you or your primary care doctor are not equipped to interpret?

The company promoting this testing themselves admit the following:

"The decision to learn about your genome, however, is a significant one deserving of serious thought. Currently there is no targeted therapeutic response to learning that you have a specific genetic variant linked to Parkinson's, and such treatments require additional research. You may also discover other unexpected health information unrelated to your PD status. While we think you should take this decision seriously, we also believe that the choice to discover this information is yours to make."

In patients with Huntington’s Disease (unrelated to Parkinson’s), we have a very specific genetic test that can predict with certainty whether or not you will get the disease. This information may be important from the standpoint of family planning, for instance. But very strict guidelines have been set up such that this information is handled very carefully, so that if the test is positive the patient and family are not left on their own to deal with it. Imagine getting test results in the mail and trying to come to grips with it while standing at the end of the driveway in front of the mailbox.

My opinion? Over-the-counter genetic testing is a bad idea. Genetic testing will almost certainly have a greater and greater impact on medical care in the future. We are hearing phrases like “personalized medicine” in this regard. Already tests like those for certain types of breast cancer (“BRCA1”) or Huntington’s disease have substantially affected decision-making for individual patients and their families. But these circumstances involve professionals like medical geneticists and other skilled health-care providers who can take that information, interpret it and help the patient make informed decisions and deal appropriately with it.

The following is feedback received for this blog:

Hi Bradley,

I have found the exact opposite to be true with respect to my 23andme experience.

I am treated at Froedtert Hospital for Dysautonomia and Orthostatic Hypotension.

Through my genetic testing I have been able to see a list of medications and my possible response to them based on my genetics. This is helpful when you are chemically sensistive.

23andme also has an option to keep your DNA completely private and not used for any type of research if you so desire.

I am hopeful that through this process a common genetic link of some type may be found in common with others who have the same diagnoses as I do and eventually new clinical trails or treatments may be developed to help perhaps not myself, but others who are diagnosed in the future.

- Liza W.

Driving and Parkinson's: When is it Time?

Wed, 22 Apr 2009 09:18:23 GMT

Post written by Bradley Hiner, MD

When thinking of driving restrictions for patients with Parkinson’s, I am reminded of the old bumper sticker put out by gun-rights advocates. You remember the one, "You can have my gun when you pry it from my cold dead fingers!” Just substitute “car keys” for gun, and you get the idea.

Let’s face it: We are a car-oriented society. We are not the Dutch, where there are more bicycles than cars; nor the French/Japanese/fill in the blank — where mass transit is so readily available and good. Americans love their cars. And one of the toughest tasks faced by the neurologist is the heart-to-heart talk on giving it up.

Studies have shown that even with normal aging, we all lose some of our motor capabilities. Reaction time, strength, coordination, maneuvering ability are all known to be affected by aging. Compound that with the decrements imposed by Parkinson’s, and as I tell patients, “at some point you have to think about giving it up.”

A study published last August in the Journal of Neurology, Neurosurgery and Psychiatry, found that the duration of having PD directly correlated with driving safety as shown by this graph:

Bear in mind that on this scale, a score of 9-10 is good-excellent, 6-8 average, 4-5 poor, and 1-3 is, well, “you better park it right now.” Most concerning was the discrepancy between the examiner’s assessment (not good) and how the driver thought he/she had done (“I’ve driven for 50 years, and I’m a very good driver!”)

We are very fortunate to have certified driver’s assessment available through our Parkinson’s and Movement Disorders Program. Bill Reinhardt, Occupational Therapist tells me:

“We look at the functional components of driving, including: alternating attention, problem solving, visual spatial skills, upper and lower extremity motor skills including ROM (range of motion), strength and proprioception (position sense), and reaction time. Most important, we observe and assess any red flags that may impair driving safety. Currently, I believe that all persons with any neurological condition, especially those of a progressive nature, should be assessed at least yearly to assess their safety.”

I encourage anyone with PD to consider having this evaluation, if nothing else than for peace of mind. We want to avoid at all costs having one of those terrible accidents occur that we read about from time to time wherein a senior citizen really shouldn’t have been behind the wheel.

The Importance of Research

Thu, 16 Apr 2009 09:25:36 GMT

Post Written by Serena Hung, MD,

Before I launch into my post about research, I wanted to acknowledge that April is national Parkinson's Awareness Month. I think a good summation of all of our efforts was put forth by Nevada Sen. Harry Reid in a statement: "We must build on our commitment to accelerate and increase federal support for Parkinson's research so that we can find a cure for this disease and end the hardships for the more than one million Americans who suffer from this disease and for their families." To read the full statement and for a great resource of information, visit www.parkinson.org.

Now, about research ...

Mr. B is a patient who I recently saw for the first time for Parkinson’s disease (PD). After confirming the diagnosis and discussing various aspects of the disease including treatment options, he said, “One of the reasons I decided to come here is due to my brother’s urging. He is a doctor out west and he recommends seeing someone at an academic medical center because doctors at academic medical centers tend to keep up with research. What can you tell me about research in PD and am I a candidate to participate?” I haven’t been asked this question in a while and I was pleased to answer. I’ll share my answer in two parts. I’ll speak about the various research projects we have here at the Parkinson’s and Movement Disorders Program in a later blog. Today I thought I’d talk about what it means to be in a research study.

Let me back up a little bit. Why is research needed? It may seem apparent to a lot of people. We are a lot farther in understanding a lot of diseases, Parkinson’s included, but we are not quite where we want to be. People are still suffering. In order to advance understanding and treatment of the disease, research is needed. Research comes in many forms. Some occurs in laboratories with cell cultures, chemical compounds, etc. Some involves animals such as flies, mice, primates. We call those pre-clinical studies. Those are done to collect as much data as researchers possibly can, especially safety data, before testing anything on humans. There are government and local institute (e.g. university research institutes, medical schools) regulations in place so that the least amount of foreseeable harm will happen to the human research volunteers.

Then the human participation starts. There are two major kinds of research involving human volunteers. One is called observational trials — volunteers are treated how they normally would be by their own doctors, but they come in periodically for testing (could be a physical examination, blood and urine tests, or imaging studies). The purpose of observational studies is to gain more knowledge about the natural course of the disease. The other kind of studies are treatment trials — volunteers are given a treatment and tests are done to evaluate how well this treatment works.

Why do people participate in research? I have heard a lot of different answers, and as a prior research volunteer myself, I can think of a few as well. The reasons for my participation was part financial (think of the options available for a poor cash-starved medical student; the studies I participated in reimbursed me for the time I spent in the laboratory and travel expenses). More important, I wanted to help. Being a medical student at that time, I was starting to understand what it took for knowledge to come about. No matter how good the animal models are, they are not human and those results may be quite far from what really happens when the same treatment is given to humans. I wanted to do my part (at that time, I wasn’t yet skilled enough to conduct research myself). My patients now tell me the same — they want to help. Depending on the specific aim of the study, some patients may not derive benefit for themselves right away (some may) but advancing science and potentially helping other people who suffer the same disease is one of their goals and sometimes is the reason driving them to participate in clinical research.

When thinking about participating in clinical research, there are few factors I think patients and their families should keep in mind. One, are they comfortable with the idea of research in general? Keep in mind that research is used to gather information. In observational trials, there is no drug or treatment given, hence no “treatment benefit” is expected. In treatment trials, the treatment in question is not an established therapy. That means whether it is helpful or not remains to be seen. Also, are they comfortable with the possibility that they may be in the group called the “placebo” or “control” group? In some trials, the placebo group gets, essentially, a sugar pill and neither the patients nor the researchers would know what kind of pill the patients are getting until after the trial finishes (this is called “blinding” and is used to avoid bias). In some trials, the control group still gets the treatment, but may get it a few weeks or a few months later than the rest of the patients in the trial. Once again, the researchers do not know what the patients in the trial are receiving. Since a research study is done to find out information, sometimes there are side effects that were not known until the treatment is given to humans.

There have been studies consistently saying that patients who participate in clinical trials tend to do better and feel better overall, even if they happen to be in the placebo or control group. The explanation for this is not clear. It could be that having follow-up appointments with physicians more frequently is helping (during the research study, typically the duration between follow-up appointments is shorter). It could also be that participating in clinical trials is motivating in some ways. For me, I am just happy that some patients think about research and want to participate since new developments are always exciting, and without patient participation, we will never get the knowledge we want and need.

Back to Mr. B — we talked about all the trials that we have ongoing at Froedtert & The Medical College of Wisconsin. Since he is newly diagnosed and hasn’t been on any Parkinson medications yet, he is perfect for one of the studies about slowing down the progression of the disease. He is currently thinking about it, and will let me know soon.

"Doctor, I Feel Dizzy!"

Tue, 21 Jul 2009 08:55:10 GMT

Post written by Dr. Bradley Hiner

All of us have at one time or another have stood up too fast and experienced a sudden feeling of lightheaded dizziness. Usually this lasts just a matter of a few moments and then it passes. Some people have experienced a different kind of dizziness called vertigo. This is a sense of things going around and around, like on a merry-go-round. Still others use the word “dizziness” to describe a feeling of being off-balance or unsteady on their feet.

Each of these 3 kinds of dizziness has unique features that allow the neurologist to get to the bottom of the cause, as the causes are different for each and the treatments are different for each. Let’s talk about the one that is often overlooked in Parkinson's disease: low blood pressure upon standing.

“Doctor, I get dizzy spells!”

Mr. G has had parkinsonism for over 5 years now and is on a number of medications. Recently he has noted that whenever he gets up from a chair or out of bed, that within moments he feels dizzy. I always ask, “if you couldn’t use the word “dizzy”, how would you describe the sensation?”. He responded that he gets very lightheaded, almost faint feeling, and that if he didn’t sit back down he might actually “go out”. On some occasions, he has noted dimming of vision, or a sudden queasy feeling. His wife reports that sometimes he “looks pasty and pale” and she wonders if he is having a heart attack or stroke. Some patients note this is worse in the morning, after a meal, or after exertion. Taking a hot shower or bath makes it worse, as can doing physical activities like yardwork on a hot day.

The answer can be found doing a simple blood pressure (BP) and pulse check with the patient laying down and then standing. Orthostatic hypotension (OH), or simply put, low BP upon standing, is a common problem in Parkinson’s disease. Normally when we stand up there may be a brief drop in BP, but our autonomic nervous system makes adjustments and prevents it from falling too low. Unfortunately in PD those reflexes are often impaired, and to make matters worse PD medications can all contribute to low BP especially the dopamine agonists like ropinirole (Requip) and pramipexole (Mirapex). A drop in BP from laying to standing of 30 points systolic (the top number) or more means that this person indeed has OH, and we may need to do something about it.

This may mean making some changes:

Eliminate if possible any medications that can contribute to low BP. Sometimes, if it’s o.k. with the patient’s internist, we can decrease or stop medications used to treat high BP. Many medications can contribute to low BP upon standing, so we want to regularly review the patient’s medication list.
If there are no contraindications (like heart disease), we often increase dietary sodium (salt) and increase fluid intake. All too often PD pts. don’t take in enough fluids, and we recommend six or more 12 oz glasses of water or juice daily.
Sleep with the head of the bed elevated. Sometimes using extra pillows is enough, but in more severe cases we recommend that the head of the bed actually go up on blocks 8-10 inches. This seems to have a beneficial effect on the kidney’s control of BP.
Compression stockings. These are not the “white stockings”, sometimes called TED or anti-embolism stockings that are commonly used after surgery. We need something stronger. One brand name is Jobst stockings, and we recommend medium compression thigh-high style.
Be aware of those situations that are likely to provoke low BP, like excessive heat, prolonged sitting or standing, drinking alcohol, dehydration, during illness or after prolonged bedrest.
Patients may choose to avoid activities that involve straining, such as heavy lifting. Prolonged coughing, straining at stool, and even vigorous singing or playing a wind instrument may cause a drop in BP.
When first getting up in the morning, sit on the edge of the bed before standing and flex leg muscles by wiggling the feet and march in place or contract thigh and calf muscles (tighten kneecaps and buttocks) to diminish blood pooling in the legs after standing.
Should the patient feel faint, the best thing to do is to sit and lean forward, or better yet, lay down and elevate the feet. This helps to restore normal blood flow to the brain.
Medications: there are a number of good medications to help with low BP. Florinef, midodrine and others can effectively prevent this from happening.

We are fortunate here at Froedtert and the Medical College to have access to sophisticated testing of the autonomic nervous system. Should a patient have severe orthostatic hypotension (low BP), we may want to take a look at how the autonomic nervous system is working. This involves a series of simple tests of heart rate, blood pressure and sweat function. The results allow us to determine if the patient has straightforward Parkinson’s disease or one of the “Parkinson-Plus” syndromes, like Multiple Systems Atrophy or Shy-Drager syndrome, that can mimic PD.

Watch for my next blog in which I’ll discuss the other autonomic dysfunctions that can be part of a Parkinson’s patient’s challenges. In the meantime, please don’t disregard episodes of “dizziness” or “lightheadedness.” Exercise the cautions listed above and consult your neurologist to get the right diagnosis and treatment strategy.

Essential Tremor

Mon, 08 Jun 2009 09:26:57 GMT

Post written by Dr. Serena Hung

A month or so ago, I gave a talk at the Community Education center about essential tremor. I didn’t anticipate such an enthusiastic response. I know we have been focusing on Parkinson’s disease (PD) on this blog, but I figure, why not talk about essential tremor? After all, it is the most common movement disorder.

Essential tremor (ET) is the name given to this disorder which consists of only tremor and not much else. It doesn’t mean that it’s not disabling because it can be. I’ll get to that later. Other names for this disorder include: benign essential tremor and familial tremor. It can start at any age and the youngest I have read about was a baby of 2 months. About 60 percent or so of the patients have a family history, but that also means almost half won’t have any family members with this disorder. It is definitely more common in people who are older. Frequently, patients would report that alcohol makes the tremors much better (but that doesn’t mean that we encourage alcohol abuse). The most common body parts involved are the hands, but the tremors can involve any part of the body. Most of the time, the tremors involve both sides symmetrically (unlike PD where symptoms on one side may be much more prominent than the other). Another difference between ET and PD is that the tremor in ET happens more frequently with action and with posture (e.g., when people hold their arms up in front of them) whereas in PD, the tremor frequently happens when people are at rest.

Again, the only symptom in this disorder is the tremor. That’s also different from PD where there are other features such as slowness in movement, stiffness and balance problems. Over time, the tremors tend to get worse. Sometimes it can be quite disruptive. Patients report trouble holding a glass of water, writing, cutting food, eating soup, putting on make up and shaving, etc. In more severe cases, patients may require a lot of help with daily activities.

Treatment options most commonly include oral medications. The two groups of medications we call first-line agents (because we know the most about them and they seem to be the most effective) are beta-blockers, such as propranolol or Inderal, metoprolol, and anti-seizure medication, such as primidone or mysoline. Both work about 50 to 60 percent of the time. The trick is to gradually increase the dose so that patients may have a better chance of tolerating these medications. The limiting factor is side effects. How we titrate the medications are based on symptoms. If a patient is not having side effects, we can continue to increase the dose until control of tremor is satisfactory. This is a trial-and-error approach and sometimes, it takes a little while and a few trials to find the best combination of drugs in the appropriate doses. If the first line agents do not work well enough, we can use other anti-seizure medications such as clonazepam, topirimate and gabapentin. There are various levels of evidence proving that they are or are not effective, but if the first two agents do not work, personally I think the rest are worth a shot.

If medications do not work well enough, sometimes we would proceed to think about brain surgery called deep brain stimulation. Simply put, this is a surgery where holes are drilled into the brain and very thin electrodes are placed in very specific parts of the brain. The other end of the electrode is hooked up to a wire which subsequently is connected to a battery that is placed underneath the skin below the collar bone. A small current is sent through the wire into the brain at all hours of the day to try and fix the abnormal rhythm generated by brain cells. In appropriately selected patients, this surgery can work well up to 90 percent of the time. Of course, brain surgery carries real risks which include: bleeding, infection, trouble with talking, memory and balance. It is a fine act of balancing the risks and the benefits.

Unfortunately for this disorder, we do not yet have a cure. However, there are a lot of treatment options. The first step to get help is to see a specialist who is familiar with this condition and all the treatment options. We are beginning an Essential Tremor Support Group in August. See our support group flyer. Excellent information is available through the International Essential Tremor Foundation:

http://www.essentialtremor.org.

Couples and Communication

Mon, 03 Aug 2009 09:21:36 GMT

An Interview with Drs. Blindauer, Hiner and Hung about couples and communication.

Question: When you think of Parkinson’s patients and their spouses that appear to be coping well, what do you think they are doing right?

Blindauer: The partners that cultivate patience — that let the spouse with Parkinson’s speak for themselves even though it may take more time — seem to project the kind of mutual respect that then gives others a cue as to how to interact with the Parkinson’s patient.

Hung: Couples that retain a sense of humor seem to do better. One patient reports falling and in an effort to help him up, his wife fell on top of him. When they realized that neither was hurt, they were reduced to laughter at the situation.

Hiner: I have a patient who has one of the Parkinsonisms — a disease that starts out looking like PD but progresses more rapidly, is not responsive to medication, and affects many aspects of the autonomic system. This man and his wife developed a practice — something they had never done before in their 30 year marriage — of having a morning and evening “touch base” session. They review what each will do that day. Why that might be inconvenient or challenging for one or the other. They touch on something they’ll look forward to that day. And then they literally touch — hold hands, hug, kiss. Touch communicates love when words and events can’t do it. Every evening they review the day, sometimes apologizing for a lost temper or a disappointment. It has almost become a spiritual practice.

Hung: I agree. Frequent, honest communication beats storing up frustrations and resentments and fears and then exploding.

Question: What do couples resist doing that you think could be helpful in coping well?

Blindauer: Many of my patients wait, almost too long, to accept outside help. The care partner’s own health can be compromised by the physical and emotional burdens of providing care. So many people say, in effect, yes, adult day services, respite care, home health care sound perfect ... for somebody else. My spouse just wouldn’t accept it. That’s were the communication comes in. Sometimes a patient must be asked to do something that they may not really want to in order for the spouse to get some help and relief.

Hung: Generationally, there are patients who have very strict rules about the roles of husbands and wives. If those husbands say, “I don’t want your cousin coming over to stay with me. I want YOU,” the wives often acquiesce. Sometimes wives don’t like to admit that they can’t do everything for their husbands anymore.

Hiner: And yet I have patients who have talked through the facts and compromised on a plan. For example:

Fact 1) It is no longer safe for you to be alone.

Fact 2) I cannot stay with you 24/7 and indeed I can’t provide all the physical and social help that you need.

Fact 3) My own physical, emotional and social health must be cared for, too.

I find these issues are similar irrespective of whether the husband or the wife is the person with Parkinson’s.

Question: When you think of particular Parkinson’s patients and their spouses who do not appear to be coping well, what do you observe?

Blindauer: First of all, people, relationships, marriages don’t suddenly change for the better because a chronic illness appears. Couples that had communication problems or simply “didn’t get along” don’t start to get along when Parkinson’s enters the picture.

Hung: Statistically, newer marriages — young onset patients — have a much higher chance of going through divorce than the rest of Parkinson’s patients because the couple doesn’t have the history — good or bad — that holds them together.

Hiner: I often refer couples who are struggling — young onset or older couples alike — to some form of therapy/counseling.

Blindauer: I notice that caregiving wives are more likely to take advantage of counseling and our Caregiver Support Group than husbands do. I think it has to do with the ways that men and women deal with stress.

Hung: Yes, studies show that women handle stress by sharing with other women. In tough times, you will find women gathered around the coffee machine at work or in the kitchen at family gatherings sharing, venting, etc. Men tend to try to be stoic. They may view the use of a therapist as a kind of failure.

Hiner: Sometimes I feel that men avoid couples therapy because they think it will be a session in which they will be “blamed” for things. Therapy should be about resolution not finger-pointing.

Question: What other factors do you think are involved in the topic of Parkinson’s and couplehood?

Blindauer: I think that as the disease progresses, an extended grieving process can take place: grief for the loss of certain abilities; grief for the loss of the “plans” a couple may have had that can’t be realized. While the patient is grieving for what they used to be — runner, preacher, dancer, socialite, lawyer, etc. — the spouse is grieving too for the loss of their spouse as they knew him/her to be.

Hung: The spouse may feel like they don’t have a “partner” anymore. They may resort to nagging about “standing up straight” or “talking loud.” Women don’t usually know how to caregive in a way other than the way they cared for children. It’s instinctual. That is not an appropriate approach with an adult.

Hiner: When cognitive changes are part of the equation it becomes even more difficult to see the patient as the same individual that the caregiver knew and married. For the most part, I believe that the goal of respectful understanding between spouses is most readily achieved when open communication is practiced. If that doesn’t come naturally, a bit of outside help through support groups and counseling/therapy is called for. We are happy to make referrals to those resources.

Blindauer: And couples need to know, it’s OK to “take a break” from each other for at least a few hours every week. The person with Parkinson’s and the care partner are still unique individuals who need to socialize with friends, participate in hobbies, go to the barbershop or beauty parlor — refresh themselves.

George Made It!

Mon, 19 Oct 2009 09:58:44 GMT

Post written by Drs. Hiner, Hung and Blindauer

This post is meant to accompany a slideshow created by John Chaplock. You may view it here:

http://picasaweb.google.com/johnius43/091011MovingForwardDavisPhinneyFoundationParkinsonSRide#

George made it! After six hours on the frigid road, 54-year-old George McCullough peddled the last mile of his 62-mile journey in the Moving Forward: Ride/Walk for Parkinson’s. You may remember meeting George as a Parkinson’s patient featured on Today’s TMJ4 News on Thursday, Oct. 8.

George McCullough made it!

Waiting in the street the entire six hours to proudly cheer him on were George’s wife, four kids, two aunts, other family members, numerous friends, Davis Phinney and the whole Moving Forward Parkinson’s tribe.

It was downright cold, in fact below freezing, at 7:30 am when George headed out behind Davis Phinney’s wife, Connie Carpenter, former Olympic cyclist, and their son, Taylor Phinney, and about 50 other serious cyclists. Taylor showed his national champion form when he finished the ride in under three hours. His toes were freezing!

At 9:00 am another 50 cyclists headed out to ride 28 miles behind our own Chris Sheridan and the executive director of the Davis Phinney Foundation, Amy Howard. At 10:00 am, another 50 headed out behind Olympic cyclist Davis Phinney to ride 14 miles. Al, a soccer referee with Parkinson’s, rode his three-wheeled low rider while George and daughter Cherie rode a tandem bike. Our many volunteers cheered them onward, some dressed as witches, monkeys and very bundled-up cheerleaders! There were many sights to see including a dog in a Moving Forward volunteer T-shirt and a man (Peter Sparrow) with a very unusual beanie talking to a cheetah, AKA our very own Vicki Conte!

At 11:00 am, more than 150 people set out on the two-mile walk. People with Parkinson’s disease, some in wheelchairs, as well as spouses, kids, grandkids, friends and neighbors all showed they could “walk the walk.” Even a Paul McCartney look-alike walked. Little by little folks returned from their various cycling and walking routes to eat brats and hot dogs, drink beer, and listen to The Blifftones rock our tent! We congratulated each other and thanked the 120 volunteers who made it all happen by cooking, serving, driving the route, and guiding riders on the route as sentries for hours and hours. And we waited for George.

Prizes were awarded to our top fund raisers – Maureen Gile and Bill & Lynn Ihlenfeld. So far we have raised over $30,000 and we’re still counting! All of the proceeds from the benefit ride will be split evenly between the Davis Phinney Foundation and the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin. Davis Phinney, world class cyclist, world class human being, and person with Parkinson’s, shared words of encouragement and solidarity with the Parkinson’s tribe. He had a similar message the day before at his Victory Summit. The encouragement to find small victories every day and savor them was embraced on this brisk October day. And then something more than a small victory occurred …

George made it! Despite eight years of living with Parkinson’s, despite his 40-year old Schwinn bike, with cheeks red, his nose wet, and to the cheers of his loved ones, George finished the challenging 62 mile course. Maybe, together with his family, doing something is better than doing nothing. George McCullough certainly did something on Sunday, Oct. 11, 2009. We all experienced the victory.

Falling for You

Tue, 05 Jan 2010 11:08:25 GMT

Post written by Dr. Bradley Hiner

Last winter I took a spill on some ice, hit my head and ended up with a concussion. I’ve been so much more cautious this year. Falls are common, can be costly and affect quality of life. Here are some facts:*

On average, one out of three people age 65 and over fall each year
Older adults who have fallen previously are two to three times more likely to fall again in the following year.
Falls are an increasing burden to the healthcare system
Falling increases the risk of nursing home placement
Post-hospitalization is a high-risk time as most falls happen in the first two weeks after discharge.

Falls can be prevented by addressing ALL of the risk factors associated with falling.*

Balance problems
Mobility issues
Multiple medications
Low blood pressure
Sensory deficits
Home hazard

Let’s look at each of these risks for a moment.

Balance Problems are often part of the multiple symptoms of Parkinson’s disease. Balance can be improved through a course of physical therapy followed by an exercise program that works those muscles needed to keep balanced. Fundamental tai chi or yoga also improves balance.

Mobility Issues are almost always a part of Parkinson’s disease. Again, physical therapy can improve mobility. Follow therapy with one of the Parkinson’s exercise programs — treadmill or dance. At the various least, find somewhere to walk for a sustained period of time safely — the mall in this weather is ideal.

Multiple Medications and multiple diagnoses are quite common as we age. Be sure that each of your doctors is aware of all of your medications. Also request that each of your doctors update the others on your treatment. My patients that see only providers here at Froedtert & The Medical College of Wisconsin are lucky in that each doctor can access the patient's entire file and can easily communicate with each other. Finally, some patients take certain medications “historically,” and may no longer need them. Bring in an up-to-date list of your meds with the dosage and timing or bring in the prescription bottles themselves. And don’t forget your over-the-counter meds and vitamins and supplements.

Low Blood Pressure, more specifically orthostatic hypotension (blood pressure that drops quickly when going from lying to standing or sitting to standing), is a very serious fall risk for people with Parkinson’s. Remember, Parkinson’s can affect the autonomic system. If you suspect orthostatic hypotension, please let your doctor know. He or she will measure your blood pressure both sitting and standing. There are a variety of ways to treat orthostatic hypotension that were addressed in my earlier blog, “Dr. I Feel Dizzy.”

Sensory Deficits are such things as poor hearing, poor eyesight or even peripheral neuropathies that can affect one’s ability to have adequate feeling in hands or feet. If we can’t see, hear or feel properly, we can miss steps or potholes. Discuss these limitations with your doctor. If your vision, hearing or touch can’t be improved, a physical and/or occupational therapist can help you develop compensatory strategies.

Home Hazards include throw rugs, electrical cords, too much furniture, low lighting, lack of handrails or shower grab bars ... even pets. While I would never give up my fierce, little dachshund, Fritzie, I might put a bell on his collar if I couldn’t hear him coming. I would certainly give away the extra rugs or coffee table if I tended to trip on the rug or bump into the table.

Finally, if you fall, keep these points in mind.

Stay down until you or a companion can assess the damage. There is no point in trying to hurry back up if something is torn or broken.
There is no reason a spouse or companion should injure him/herself while assisting you. Everyone should remain calm and formulate a plan for how to assist you in rising. Usually bringing a chair into close proximity will allow you to get on your hands and knees and allow you to place your hands on the seat of the chair to move slowing from the kneeling position into the seat of the chair.
Sit for a few minutes before you try to do anything else.
Talk to your physician about having a fall-risk evaluation.
If you live alone, or are alone a good deal of the day or night, consider using a medical alert service.
View Dr. Dorothy Baker’s video demonstration at www.learntofall.com.

*Source: Baker, Dorothy, PhD. RNCS., Research Scientist, Yale University School of Medicine New Haven, Connecticut; Connecticut Collaboration for Fall Prevention.