movement

Duopa device among newer treatments for Parkinson’s disease

Until August, Kern Jackson avoided going out in public.

Parkinson’s disease had progressed far enough that the levadopa pills he’d taken since 2008 weren’t as reliable to ease the symptom of his muscles freezing up. In the past two years, he had to take the medicine more frequently as it wore off quickly, leaving him unable to move.

“I was taking pills every two hours, and during the night,” said Jackson, 70, a retired physician who lives in Medical Lake. “It would take 20 to 45 minutes to be effective, then I’d be moving normally for about an hour. It was hard to plan to do anything.”

So in August, Jackson chose to get a newer Duopa device through Dr. Jason Aldred, a neurologist at Northwest Neurological. The Spokane clinic partners with Inland Imaging, where patients go in for an outpatient procedure to make a small incision in the stomach wall and insert a tube in the small intestine.

The external Duopa device has a pump for continuous delivery via the tube of a levadopa gel, contained in a medication cartridge that patients reload once a day into the device.

According to Aldred, the Duopa device first became available in 2015 after U.S. Food & Drug Administration approval, and it’s among a couple of newer developments for Parkinson’s treatment. The clinic also is participating in two clinical research trials that are attempting to slow disease progression.

The day after his outpatient procedure, Jackson saw Aldred at Northwest Neurological to program the system’s medicine dosage. Clinic staff observed Jackson’s movements for a day during office hours to make sure the new system was syncing correctly for his ability to get around.

Jackson now wears the device in a belted pack around his waist, and he said it’s helped him be more active. He and his wife, Diana, have since traveled by airplane and walked on the Centennial Trail.

“I feel much more confident going somewhere,” Jackson said. “I just went to a men’s retreat in Idaho with my son-in-law, and things went well.”

Although estimates vary, about 1 million people in the U.S. live with the disease, according to the Parkinson’s Foundation. Symptoms include tremor, rigidity, extreme slowness of movement and impaired balance.

Levadopa, now used for more than 50 years to treat Parkinson’s, is often considered the most effective for treatment of motor symptoms.

“Levadopa is turned into dopamine in the brain and replaces dopamine,” Aldred said “That’s huge because dopamine is the natural chemical in the brain that’s low in Parkinson’s patients, so we literally have the ability to replace something that’s low to bring about remarkable improvement in movement, stiffness and tremor.

“However, it doesn’t slow the progression. It treats symptoms remarkably for years or decades. Parkinson’s progresses slowly, but it does progress, and it can cause horrible quality of life issues.”

The Duopa device is offered as a choice for some patients with moderate to advanced Parkinson’s if levadopa in a pill form becomes less reliable, Aldred said. Other patients might be candidates for deep brain stimulation, a therapy that’s been around since 1997, he said.

“As the disease advances for moderate to advanced Parkinson’s, the medicine kicks in and wears off,” said Aldred, adding that also long-term, the disease affects other nerves outside of the brain including in the stomach, so medicine is less effectively moved into the small intestine for absorption.

“We call it dose failure,” he said. “That’s actually a big problem; the medicine is sitting in the stomach and doesn’t move. With the Duopa device, the tube mechanically bypasses the stomach and goes into the small intestine, and the medicine is released physically past the stomach.”

Aldred said the Duopa device is new enough that, so far, just over 30 of its clinic patients have one.

“This is a very new treatment and largely people are slow to warm up to it,” he said, adding that some people might have a stigma about having a tube inserted, a procedure that’s sometimes associated with end-of-life issues.

The small amount of tubing that’s external is flexible, Aldred said, and it’s hidden often under clothing. It can be disconnect for up to two hours if needed.

However, Aldred said current treatments, including Duopa, only partially relieve symptoms, so the two research trials are attempting approaches that might slow or stop the disease’s progression.

Both trials are seeking to stem what is thought to damage cells in the brain that regulate behavior, cognition and movement. A main research focus is finding a way to stop or clear out Lewy bodies, which are abnormal aggregates of protein that develop inside nerve cells in Parkinson’s.

“We have some interesting, cutting-edge NIH, Michael J. Fox Foundation-affiliated clinical research trials,” Aldred said.

One is a vaccine trial using anti-bodies in an attempt that might prevent the spread of Lewy bodies in the brain. A second phase of that study started this month involving a handful of clinic patients.

The other trial will test Nilotinib, a FDA-approved medicine used in treatment for a form of leukemia, but with a fraction of the dose applied for patients with mild Parkinson’s.

“This is a medication that may enhance the clearing of Lewy Bodies from the brain that we think is destructive,” Aldred added.

“We’re trying to get to the point before it spreads,” he said. “That’s a novel way of treating Parkinson’s. These two trials if they’re proven to work, which they haven’t been yet, may be safe and effective ways to slow the disease progression or potentially halt the disease progression.”

There’s also a new device that came out this year for deep brain stimulation, Aldred said. “It was developed by St. Jude’s Medical (since acquired by Abbott). We can aim the electrical current more precisely in the brain to get better effect.”

The DBS treatment requires surgery to implant a wire with four electrodes that deliver an electrical current in the brain to regulate abnormal impulses and smooth out “on time” and “off time” experienced by patients as the impact of medication rises and falls.

The DBS treatment and the Duopa device haven’t been studied head to head on whether one is more effective than the other, Aldred said.

“If someone has moderate cognitive issues, we’d never want to do DBS,” he said.

Alternatively, he added that the Duopa device might be a choice for some patients who aren’t comfortable with DBS.

“I tell patients this is a heavy diagnosis, but there is lot we can do, and one of the things is exercise, ” said Aldred, who encourages physical therapy and regular exercise to maintain better movement and quality of life.

 

Article from The Spokesman-Review.

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Gifting Appreciated Stock to WPA

A gift of stock to Wisconsin Parkinson Association may make sense for you. It’s a simple process that can have a big impact on WPA.

Why gift stock?
You can gift appreciated stock held over one year and receive a charitable deduction for tax purposes.

What is the procedure to gift stock?
You need to transfer your stock in writing. The date the stock is transferred is the date used for the calculation of your charitable contribution. For stocks, the average of the High and the Low Trading Price for the day is used.

The brokerage account WPA uses for appreciated stock is at the investment firm RBC Wealth Management. Please contact RBC (information below) to inform them that you will be transferring stock to Wisconsin Parkinson Association.

Then, contact your broker about transferring your stock to the Wisconsin Parkinson Association. Your broker will advise what documentation they require.

It is RBC’s policy to sell all securities when they are received. They will prepare a letter for you and WPA that shows the value of your charitable contribution for tax purposes.

Thank you for your generosity!

DTC #0235 Capital Markets
Account # 315-66414
Account Name: Wisconsin Parkinson Association

RBC Wealth Management
Bob Chernow – 414-347-7089
Linda Cowan – 414-347-7088
Jeanne Watson – 414-347-7087
Fax – 414-347-7670

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Parkinson’s on the ROPES: Exercise programs incorporating boxing skills

When Preston Moon was diagnosed with Parkinson’s disease at age 53 in 2008, he never dreamed he’d be bobbing and weaving in a boxing gym or pounding punching bags one year later. After learning that the condition would progressively impair his motor function due to a loss of brain cells that produce the chemical messenger dopamine, he thought he had little to look forward to but a steady decline. Then, in 2009, his next-door neighbor in Indianapolis mentioned Rock Steady Boxing, a local nonprofit program she’d attended that used boxing to manage the symptoms of Parkinson’s disease.

Moon was skeptical. “I’m a retired Army sergeant first class, and physical training was something I did but didn’t necessarily enjoy,” he says. “The last thing I wanted to do was work out again.” But with little to lose, he decided to check out the program. What he saw at the gym was surprising: People were punching small speed bags and large heavy bags, doing footwork and balance exercises, and performing calisthenics. “It was people of all ages, male and female, and they were—excuse my French—going balls to the wall,” Moon says. “I thought, ‘These guys have Parkinson’s?’ It changed my attitude immediately.”

He’s been boxing three or four times a week ever since. Eight years later, he feels strong, does push-ups, can run, and rides a motorcycle. His disease has affected him cognitively, slowing his thinking and making it difficult to come up with timely assessments and solutions in his work as a systems analyst, which is why he recently took long-term disability from his job. “But physically,” Moon says, “I don’t look or feel like I have Parkinson’s.”

GROWING STRONG

Moon was an early convert to an exercise regimen that’s expanding nationwide. The earliest proponent was Rock Steady, founded in 2006 in Indianapolis by Scott C. Newman, a community leader who was diagnosed with Parkinson’s disease and found that boxing helped with some of his symptoms. Together with Kristy Rose Follmar, a former professional boxer with world and Indiana state titles, he developed a program using a variety of training exercises—pummeling a speed bag, for example—to address symptoms such as loss of hand-eye coordination. Variety, fun, camaraderie, and intensity—but no actual fighting—are core elements of the program, with exercises designed for people of different abilities and in different stages of the disease.

Rock Steady now has affiliates around the country, and other programs have cropped up, too. These are often led by former professional fighters, such as Paul Delgado of Livramento Delgado Boxing Foundation (LDBF) and PD Gladiators in Atlanta, Mark Royce and Tate Wheeler of Knock Out Parkinson’s in four locations in Minneapolis-St. Paul, MN, and Paulie Ayala of Punching Out Parkinson’s in Fort Worth, TX.

TRAINING COACHES

The programs share many characteristics. For instance, the prospective instructors often have had experience working with people who have Parkinson’s disease, says S. Elizabeth Zauber, MD, associate professor of clinical neurology at Indiana University School of Medicine and an early member of Rock Steady’s board of directors. Further training for prospective coaches usually involves learning more about boxing and Parkinson’s, as well as how to structure a class.

MAKING ASSESSMENTS

All participants are assessed based on observations from coaches, as well as tests that measure abilities such as balance, gait, and grip strength. Boxers are then placed in classes appropriate for their level of function or follow customized workouts. “The assessment helps us get to know the people,” says Rock Steady executive director Joyce Johnson, whose mother had the disease. Coaches also factor in age, fitness level, other health problems, and cognitive abilities, says Dr. Zauber. “If someone can’t do something, instructors need to be able to adapt exercises and levels to that person’s needs.”

Patients may also undergo more thorough testing at their neurologists’ offices and/or with a physical therapist. Once they start, participants are assessed regularly. Knock Out Parkinson’s, for instance, performs assessments monthly, tracks the progress of each patient, and reviews the results with them. “Several of the patients in our program have neurologists who tell them they should keep doing what they’re doing with the boxing ‘because it’s working,’” Royce says.

TAILORING WORKOUTS

Creating customized workouts is key, says Adolfo Ramirez-Zamora, MD, associate professor of neurology at the University of Florida Center for Movement Disorders and Neurorestoration in Gainesville. Being in a wheelchair, for example, doesn’t have to be prohibitive. “Even if your balance isn’t good,” he says, “there’s still a lot you can achieve.”

If needed, coaches or volunteers provide one-on-one assistance. Participants who are at the lowest-functioning level are required to have a “corner man”—a trainer, volunteer, or care partner—to assist with the workout.

SPECIFIC MOVES FOR SPECIFIC SYMPTOMS

Boxing classes typically last 75 to 90 minutes and are designed to tackle symptoms in multiple ways. For example, warm-up exercises stretch muscles and relieve stiffness. Hitting heavy bags builds power and strength. Punching speed bags improves hand-eye coordination and posture. To stimulate cognitive processing, a trainer may hold “focus mitts” as targets and bark out varied instructions—“right, left, uppercut!” Shouting exercises and loud counting work on soft-voice disorders common in people with Parkinson’s disease. Calisthenics and isometric exercises build extremity and core strength critical for posture and gait. Footwork and drills such as moving sideways, jumping rope, or walking on a two-by-four improve balance and agility. Group games that involve tossing footballs, medicine balls, beach balls, or Frisbees encourage socialization and improve reaction time.

At LDBF-PD Gladiators, trainers call out punches using a number system that Delgado and his coach used when he was a pro fighter. “When I call out ‘one, two, three!’ that’s an intentional sequence—jab, right cross, left hook,” Delgado says. “Participants need to make these moves correctly.” Translating numbers to punches makes the workout mental as well as physical. Delgado recently switched the right-handed sequence to a left-handed version. “I’m making them southpaws,” he says. “That way they’re boxing from their weak side as well as their strong side, and the numbers apply to mirrored moves so they have to be cognitively sharper to throw those punches.”

PUSHING LIMITS

Rock Steady leaders say that “forced exercise”—demanding more effort than people would exert on their own at whatever level of function or fitness—is key to success. “We tell coaches-in-training that these guys can be pushed and don’t want to be treated like sick people,” Follmar says. “We’re respecting them by encouraging them with tough love, and that gives them confidence.”

FIGHTING A DISEASE

Anyone dealing with Parkinson’s disease is in some sense fighting it, but boxers feel like they’re fighting it literally and physically. “That idea is important,” Follmar says. “There’s a toughness about Rock Steady that makes people feel empowered.”

At Knock Out Parkinson’s, coaches sometimes keep the foe—Parkinson’s—front and center. “They’ll give us a series of drills while we recite ‘Knock! Out! Parkinson’s!’ and “I! Hate! Parkinson’s!’—punch, punch, punch—and scream as loud as we can,” says Lee Goderstad, who joined Knock Out Parkinson’s in March 2016. The drills also help participants work their vocal cords to strengthen them and combat loss of voice.

For Moon, boxing is an alternative form of therapy. “I was never one to go to support groups,” he says. “I was taught to adapt and overcome. We [boxers] don’t get in a group and moan about how rough we have it. Sure, we have challenges. So what do we do to get over them? I wanted to be part of something that would help me get over them, and I found that through boxing.”

WHAT THE SCIENCE SAYS

An early news story on Rock Steady motivated Stephanie Combs-Miller, PT, PhD, associate professor at the University of Indianapolis’ Krannert School of Physical Therapy, to investigate the benefits of boxing. In a preliminary case study of six participants published in Physical Therapy in 2011, she found that every participant improved on at least five of 12 measures, including balance, gait, walking speed, stride length, step width, get-up-and-go time, and ability to reach forward, over three months. “Some people improved on all of them,” Dr. Combs-Miller says. “It was a pretty strong indication that something positive was going on.”

VARIETY AND INTENSITY ARE KEY

That “something” may not precisely translate to boxing. “The regimen is a mix of aerobics, resistance training, balance exercises, and, for part of it, boxing-related activities,” says Ergun Uc, MD, professor of neurology at the University of Iowa Hospitals and Clinics in Iowa City, who has researched exercise and Parkinson’s disease. “While you can’t say boxing improves Parkinson’s, you perhaps could say that the training regimens boxers use might improve symptoms of the disease.”

In a follow-up clinical trial in 2013 published in the journal NeuroRehabilitation, Dr. Combs-Miller and colleagues recruited 31 people and assigned half to a boxing group and half to a control group that did more traditional resistance, aerobic, and balance exercises. Both groups showed significant improvements in balance, mobility, and quality of life, with variations on certain measures over three months. “My hunch is that it doesn’t matter if people box, play basketball, cycle, or dance, as long as they exercise at a high-intensity level,” Dr. Combs-Miller says. For example, traditional exercisers actually reported slightly more confidence in their balance than boxers.

That hunch is supported by earlier research published in Neurorehabilitation and Neural Repair in 2009. Cleveland Clinic investigators found that when people with Parkinson’s disease rode a tandem bike that forced them to pedal faster than they would normally, their motor scores on a measure called the Unified Parkinson’s Disease Rating Scale improved by 35 percent. Motor scores in a control group that pedaled at their preferred speed didn’t improve, even though aerobic fitness gains for the two groups were similar. The research seems to suggest that intense exercise has benefits beyond activity-specific fitness.

PROGRESSIVE CHALLENGES ARE IMPORTANT

What is considered intense depends on what kind of shape people are in. “Most people are so deconditioned that even lower-intensity exercise can push their boundaries,” says Lisa M. Shulman, MD, FAAN, professor of neurology and director of the University of Maryland Parkinson’s Disease and Movement Disorders Center in Baltimore. In a 2013 study published in JAMA Neurology, she and her colleagues showed that lower-intensity exercise like walking on a treadmill at a normal, comfortable speed was more effective than higher-intensity treadmill or resistance exercise in improving gait speed.

Yet the benefits tend to be specific to the form of exercise. Walking improves gait but not strength. Strength training makes you stronger but not more aerobically fit. “There is good reason to believe that because boxing combines multiple types of activities, it has special benefits,” Dr. Shulman says.

These boxing programs also encourage participants to progress as their skills improve. “It’s well known in training research that you need to be adaptive and progressive,” Dr. Uc says. “You try to increase performance and not stay at one level. But boxing isn’t the only exercise that does that. Generally, anything that motivates patients and safely increases the level of physical activity improves a variety of symptoms.” Yet boxing may still be special, Dr. Uc allows. “There’s a coolness factor,” he says. “Perhaps it’s more interesting and motivating.”

It’s too early to say definitively that boxing or other forms of exercise slow the progression of Parkinson’s disease, says Dr. Shulman. And Dr. Uc says that more research is needed in larger samples of patients before boxing regimens become a recommendation for Parkinson’s patients. “But substantial evidence from animal studies suggests that exercise benefits brain pathways involved with the disease,” Dr. Shulman says.

EMOTIONAL EMPOWERMENT IS A BONUS

Camaraderie is another special ingredient of these programs, according to participants, coaches, caregivers, and researchers. A 2016 study published in the Journal of Applied Sport Psychology found that training with a group carried a variety of emotional benefits. It helped relieve anxiety by allowing participants to talk and joke about Parkinson’s with others who understood the disease. Participants also reported that they were inspired by their peers, felt like athletes, and found a sense of mutual support.

Researchers haven’t yet studied the impact of boxing’s social component in people with Parkinson’s disease. “But I think there’s something about the feeling of empowerment patients get from it,” Dr. Shulman says. “Boxing sounds strong, and they are proud to be involved.”

 

Article from Neurology Now.

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First Drug Approved for Dyskinesia in Parkinson’s Disease

Adamas Pharmaceuticals recently announced U.S. Food and Drug Administration (FDA) approval of an extended-release formulation of amantadine (GOCOVRI) to treat dyskinesia in Parkinson’s disease. This is the first drug indicated specifically for dyskinesia — uncontrolled, involuntary movements that can develop with long-term levodopa use.

Extended-release amantadine is intended to be taken once daily at bedtime. In this way it can control dyskinesia during the day, when it typically is most prevalent. The new therapy’s approval is based on data from three placebo-controlled trials that demonstrated safety and efficacy. In addition to easing dyskinesia, the drug also may lessen total daily “off” time, when Parkinson’s symptoms return because medication is not working optimally.

The Michael J. Fox Foundation (MJFF) helped move this drug to market by supporting the creation and authentication of the Unified Dyskinesia Rating Scale, a tool that was used to measure the drug’s impact in trials.

“Dyskinesia can significantly compromise quality of life for people with Parkinson’s,” says Todd Sherer, MJFF CEO. “We are pleased that patients have another option to manage this aspect of the disease and glad the Unified Dyskinesia Rating Scale — a tool our support helped develop and validate — could show clinical efficacy of GOCOVRI for the treatment of dyskinesia.”

Extended-release amantadine is a reformulation of a currently available generic immediate-release version, which is approved to treat Parkinson’s symptoms.

 

Article from Michael J. Fox Foundation for Parkinson’s Research.

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7 Helpful Hand Exercises for Parkinson’s

Follow along as a physical therapist walks through 7 “handy” Parkinson’s exercises to help you improve finger and hand dexterity. For more helpful Parkinson’s resources and exercise videos, visit www.invigoratePT.com.

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The Power of Exercise Video

Exercise is one of the most important ways people with Parkinson’s can help control their symptoms. Through a grant from the Wisconsin Physical Therapy Fund, a group of physical therapists created this video. For more information on exercise groups and classes led by physical therapists, visit exercisepd.com.

 

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Recent Photos

Check out some photos from WPA staff’s recent visits to support groups and exercise classes in Wauwatosa and Lake Geneva. To see more photos, visit our Facebook page.

 

 

 

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How Google Glass can help people with Parkinson’s

Moving Through Glass, an experimental app for Google Glass, offers people with Parkinson’s dance-based visual and musical cues routines to help them move and exercise.

http://money.cnn.com/video/technology/2015/06/09/google-glass-app-for-people-with-parkinsons.cnnmoney/

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