movement disorder

Video: Not all disabilities are visible

In this video from Parkinson’s UK, people all over the world talk about their Parkinson’s.

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WPA on The Morning Blend

Jeremy Otte, our director of outreach & education, and board member Ron Mohorek were on the The Morning Blend on TMJ4 this morning talking about Parkinson’s and our upcoming Symposium!

Thanks to Amada Senior Care for including us!

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Deep Brain Stimulation for Parkinson Disease

This article appeared in the Spring 2018 issue of The Network magazine.

Deep brain stimulation (DBS) is an advanced therapy for patients with Parkinson disease (PD) suffering from complications of carbidopa/levodopa treatment. It has been FDA approved for use in PD since 2002 and for tremor prior to that. DBS involves the surgical implantation of a device with electrodes that deliver electrical signals to specific areas within the brain. Once the electrodes are placed, they are then connected to an implanted pulse generator (battery) which is placed under the skin, typically in the chest. When the device is activated, it delivers regular electrical pulses to that area of the brain and results in improvement of PD symptoms. The exact mechanisms of how DBS improves symptoms are not known. However, we do know that it disrupts pathological signals that occur within the brain of PD patients.

Currently, DBS is approved for those patients with a diagnosis of idiopathic PD, who have had symptoms for four or more years and suffer from motor complications that are not controlled with medications. Motor complications refer to the medications not lasting as long (wearing off), levodopa induced dyskinesias (extra, abnormal and involuntary movements) and dose failures.

Individuals who would not benefit from DBS are those with atypical forms of PD, those with signs of dementia and those whose symptoms do not improve with levodopa. Depression and anxiety do not preclude someone from receiving DBS, but these should be addressed, treated and well controlled prior to proceeding.

The process of implanting DBS for patients is a lengthy process. It involves careful pre-surgical screening, two or three surgeries and many follow up programming appointments. The first step is what is called an “Off/On Test.” For this test, the patient comes to an appointment with the neurologist after not taking PD medications from the night before. The patient is then examined in this “Off” medication state. Then, the patient receives a higher than usual dose of carbidopa/levodopa and then re-examined once those take effect.

The next step is to have a formal neuropsychological evaluation performed. This evaluation typically takes about a half of a day and includes extensive testing of memory, language and other cognitive abilities. Once these two preliminary evaluations are complete, most DBS centers hold a multi-disciplinary case conference to discuss these results and the patient’s candidacy for DBS surgery. If there are no contraindications to surgery, the patient will meet with the neurosurgeon who reviews the procedure and the potential risk of surgery. Often times, an additional pre-operative medical evaluation is also required to screen for other medical conditions that could pose additional surgical risks or potential complications. The patient also receives a pre-surgical MRI of the brain to assist with placement of the DBS electrodes.

Most centers perform DBS implantation in two or three individual surgeries. After the DBS device is implanted, the patient then returns to the clinic to turn the device on, typically after three or four weeks. The number of programming appointments needed varies from one patient to the next but can take 6-12 months to reach optimal settings. The battery is checked at routine follow-up appointments and depending on which device is implanted, the battery will need to be replaced from time to time.

Not all symptoms of PD will improve from DBS therapy. The general rule of thumb is if particular symptoms improve after taking carbidopa/levodopa then those symptoms can be expected to improve with DBS. The caveat to this rule are refractory tremors. Tremor in PD can often be resistant to carbidopa/levodopa, but responds well to DBS. In addition, DBS can significantly reduce problems with medication wearing off and dyskinesias. Walking difficulties in PD can be varied and complex. Some of these may respond to DBS but many do not, including balance. Therefore, patients should consult with their DBS physician prior to surgery in regard to their specific walking issues.

Symptoms that are unlikely to improve with DBS are those symptoms that worsen with levodopa, balance, memory problems, speech and swallowing difficulties. DBS can also allow the reduction of some of the PD medications, although it is not realistic to expect to stop all PD related medications after surgery.

It is important to understand that DBS is not a cure however, it is very effective at treating many motor symptoms of PD and improving quality of life.

Ryan T. Brennan, D.O. is an assistant professor in the Department of Neurology at Medical College of Wisconsin.

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Exercise Improves Cognition in Parkinson’s Disease

It’s well known that exercise invigorates both body and mind. Exercise studies in Parkinson’s disease (PD) have shown improved mobility and quality of life, and possibly slower rate of disease progression. But what can exercise do for memory and thinking (cognition), which can be affected to different degrees at different points in the course of Parkinson’s?

Recently, a group of researchers answered that question by reviewing exercise and cognition studies conducted in people with Parkinson’s over the past 10 years. They confirmed the benefit of exercise on cognitive function in people living with PD.

For this study, researchers analyzed nine randomized controlled trials from several countries. The participants of these trials were, on average, 60 to 74 years old, diagnosed with Parkinson’s six years prior and living with mild to moderate disease. Exercise programs varied in length, number and duration of sessions, and included studies with a treadmill, stationary bicycle, stretching and strengthening (with and without a Wii Fit exercise program), tai chi and tango. Volunteers’ cognitive function was tested throughout each study to see if the exercise had an effect.

Of the specific exercise programs reviewed, tango, stretching and strengthening with a cognitive component (a Wii Fit exercise program), and treadmill training had benefits on cognition. The latter — walking at a person’s preferred speed or slightly slower for about an hour three times a week for 24 weeks — boosted cognitive function more than the other two exercise programs.

More support for exercise, and treadmill exercise in particular. But this doesn’t mean that treadmill walking is the best exercise for Parkinson’s. Many questions remain about the optimal type, amount and intensity of exercise to keep cognitive (and other) symptoms at bay. Larger, well-designed studies can help provide answers and clarify effects.

Multiple forms of exercise for many symptoms are currently being investigated. Register for Fox Trial Finder to match with recruiting trials. As researchers work to define the ideal exercise for your Parkinson’s, continue regular exercise that you enjoy.

Speak with your physician and physical therapist to design a program that meets your needs and visit our website to learn more.

 

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

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7 Home Safety Tips

After a Parkinson’s disease diagnosis, adjustments and renovations both small and large can help make your home more comfortable — and safer — for yourself or a loved one with Parkinson’s disease, especially if gait, balance and fatigue symptoms are an issue.

Our community shared changes they made around the home that helped them. You can also find our guide to assistance products for Parkinson’s disease such as utensils with a padded, ribbed handle and non-slip shoes, which can also help make life at home with Parkinson’s disease more comfortable.

Not all of these recommendations may be the right fit for you or your loved one. Connect with an occupational therapist for personalized advice on making changes around your home. An OT can also help you plan for how to make further adjustments as the disease progresses.

1. Start with small changes, like getting rid of potential obstacles on the floor such as throw rugs and extension cords. Leave plenty of space between pieces of furniture, and create a clear path through your home.

2. Tackle the bathroom. Start by getting rid of bath mats that may slip, and add a non-slip mat to the shower or bath tub. Several commenters recommended getting an elevated toilet seat, which can help make it easier to stand back up. Be careful not to use a towel rack or toilet paper dispenser for help getting up — if possible, install safety rails instead.

3. Add more lights around the house. Light makes navigation easier and can also boost mood, one commenter noted. Touch lights and lights that respond to sound also help.

4. If it’s in your budget, install railings along walls and hallways to help with balance and prevent falls.

5. Invest in chairs that are easier to get out of, such as adjustable recliners or chairs with straight backs, firm seats and arm rests. Firm cushions can add height and help with standing, as well.

6. Consider making more significant renovations, if your budget allows, such as building ramps, stair lifts and wider doorways. Medicare covers different types of portable medical equipment, but not permanent installations.

7. Besides practicality, also make adjustments for comfort. One commenter even found a way to help her two Yorkies sleep better, too, after her husband started acting out his dreams.

 

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

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Participate in Research from Home

Researchers from the University of Rochester’s Department of Neurology are conducting a study to identify the needs of people living with Parkinson’s and opinions and knowledge about palliative care. The online survey will take an estimated 20 minutes to complete and ask questions about your Parkinson’s, symptoms and care

The survey will ask questions about your Parkinson disease, your current quality of life, the presence of controlled and uncontrolled symptoms, your thoughts about your own future care, and your opinions and knowledge of palliative care.

WHO IS ELIGIBLE?
People living with Parkinson’s. Begin the survey to complete eligibility requirements.

WHEN
The survey is open now.

WHERE
Online by computer, smartphone, tablet or other electronic device.

TAKE THE SURVEY HERE

 

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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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WPA Open – Thank you!

WPA hosted our 6th Annual WPA Open Against Parkinson Disease on September 12, 2017 at The Legend of Merrill Hills in Waukesha, WI. This golf outing and dinner are the only fundraiser WPA coordinates, and the money raised supports outreach, education and services to people with Parkinson disease, their caregivers, family members, and health professionals.

Thank you to Financial Strategies, Inc., and HeatTek, Inc., our presenting sponsors, as well as all of the sponsors who made this event a success. To see photos from the day, click here.

One of the highlights of the outing this year was having Patrick Pelkey with us. Patrick is a Parkinson’s Support Group leader, and he is a woodcarver. He spent the day carving these beautiful “comfort birds” that we auctioned off. Patrick has Parkinson’s, and he has found that when he starts carving, his tremors subside.

The smooth texture and beautiful wood have a calming effect, and Patrick is proud to share his talents with children and adults who need comforting.

Thanks to all who supported the WPA Open!

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Getting a Good Night’s Sleep

Parkinson’s disease creates many challenges to getting a good night’s rest. Try these tips to help you get enough rest and sleep, which is an important component of overall health and quality of life.

Getting a Good Night’s Rest

  • Make a regular, relaxing bedtime routine a habit.
  • Maintain a regular sleep schedule: get up and go to sleep at the same time every day.
  • Get plenty of bright light exposure during the day, particularly natural daytime light.
  • Decrease fluids several hours before bedtime, and go to the bathroom before getting into bed to sleep.
  • Avoid strenuous exercise, alcohol, nicotine and caffeine within 4 hours of your bedtime.
  • Use your bed only for sleeping and intimacy with your partner.
  • Banish animals from the bed!
  • Customize your sleep environment: invest in a good mattress and pillows.
  • Set the bedroom temperature at a cool, comfortable level.
  • Limit daytime napping to a 40-minute NASA nap (yes, tested by astronauts!).
  • Lie down to sleep only when sleepy. Learn to tell the difference between fatigue and sleepiness.
  • If you are unable to sleep after 15 minutes, get out of bed and engage in a relaxing activity like listening to music, meditation or reading until you are sleepy.
  • Turn off the TV. If weaning yourself of a TV habit is difficult, try a relaxation or nature recording.
  • Keep lighting and noise at low levels when trying to sleep.
  • Eliminate the common but bad habit of “checking the clock” throughout the night.
  • Limit prescription sedatives to a 2-week period; instead, try over-the-counter alternatives such as Valerian root capsules.
  • Sleep as much as needed to feel refreshed, but avoid spending too much time in bed.

Getting into Bed

  • Approach the bed as you would a chair; feel the mattress behind both legs.
  • Slowly lower yourself to a seated position on the bed, using your arms to control your descent.
  • Lean on your forearm while you allow your body to lean down to the side.
  • As you body goes down, the legs will want to go up like a seesaw.
  • DO NOT put your knee up on the mattress first. In other words, don’t “crawl” into bed.

Rolling or Turning Over in Bed

  • Bend your knees up with feet flat.
  • Allow knees to fall to one side as you begin to roll.
  • Turn your head in the direction you are rolling and reach top arm across the body.
  • Some PD patients find that silk sheets help them move better in bed.

Scooting Over in Bed

  • Bend your knees up with feet flat.
  • Push into the bed with feet and hand to lift your hips up off the bed. Then shift hips in the desired direction.
  • Finish by repositioning feet in the direction your hips moved.

Getting Out of Bed

  • Bend knees up, feet flat on the bed.
  • Roll onto your side toward the edge of the bed by letting the knees fall to that side. Reach across with the top arm, and turn your head to look in the direction you are rolling.
  • Lower your feet from the bed as you push with your arms into a sitting position.

 

Information from Parkinson.org.

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