Community Recommendations: Assistance Products for Parkinson’s Disease

By Nancy Ryerson

Update: In January 2016, we covered the progress of a special glove that uses a gyroscope to cancel out tremor. It’s still being tested and adjusted, but its inventors hope that it will be available in the U.K. market before September.

In June, NPR profiled an 11-year-old girl named Lily and her design for a special cup for her grandfather, who has Parkinson’s disease. Called the Kangaroo Cup, it has three plastic legs attached so it won’t tip over (kangaroos jump with their legs plus their tail, says Lily).

If you have Parkinson’s disease or live with someone who does, chances are you’ve come up with your own creative solutions to making daily life easier. We asked our Facebook community about assistance products they use or solutions they’ve discovered, and added in a few popular options that have been in the news lately.

While some options are on the pricier end, like a motorized spoon that cancels out tremors, others are do-it-yourself projects made with materials picked up at your local hardware store.

If you have any ideas to add, please leave them in the comments!

Kitchen:

Mealtime can be sometimes be frustrating with Parkinson’s symptoms. Utensils with ribbed, ergonomic rubber handles are easier to hold and often available at specialty stores, or sometimes at local retailers like CVS, our Facebook community says.

For a DIY approach, Facebook community member Tim Rusteberg suggests finding liquid rubber for tools at your local hardware store, and adding it to utensils.

If it’s in your budget, the Liftware spoon uses stabilizing technology to cancel out tremors while you eat. In a clinical trial, it cancelled out 70 percent of tremors.

Hygiene:

Faucets and toothpaste tubes can pose a challenge as part of a morning routine. “[I use] a sonic toothbrush and dental floss picks to keep inflammation at bay, and all products in a pump so I don’t have to twist off the tops,” Betsy Arbelovsky shared. She also installed touch on and off faucets in her kitchen and bathroom.

Electronics:

Community member Christian Mögel has a creative setup for his computer at work – he placed a mouse on each side of the keyboard so he can use the hand that’s feeling better at any particular time. For home, he purchased a 27-inch tablet that he’s found helpful. “Due to its size the areas I have to hit for a certain command are much bigger than on a regular PC or tablet. I can bring the tablet flat about 8 inches over the table, so I can easily work standing,” he wrote.

Several members of our Facebook community suggested trying out Dragon voice recognition software if typing becomes difficult.

Around the house:

If using keys to get in your house is a frustrating process, April Schorr Logsdon recommends installing a number punch entry at the front door.

For indoor ease, several commenters suggest installing touch lights around the house, especially in the bedroom. “My mom has ‘touch’ lamps in the bedroom in case she needs to get up at night,” says Lara Sees-Schob. “I think these are awesome because she doesn’t have to fumble around and try to turn the lights on, especially if she’s a little shaky… Works great!”

Clothing:

Commenters also advised wearing non-slip shoes and finding styles that are easy to put on. “[I wear] slip-on shoes that curve up a bit – reduce tripping,” says Betsy Arbelovsky.

A few different Facebook community members recommended the clothing site Buck and Buck, a website that offers clothing to make self-dressing and assisted dressing easier. MagnaReady dress shirts, which have buttons on the outside but close using magnets, are another popular choice.

Source:: Fox Feed Blog

Treating Parkinson’s disease by solving the mysteries of movement

Two secrets of one of the brain’s most enigmatic regions have finally been revealed. In a pair of studies, scientists have discovered a specific neural circuit that controls walking, and they found that input to this circuit is disrupted in Parkinson’s disease. The research reveals two potential new targets to treat movement disorders.

Source:: Science Daily

Identifying another piece in the Parkinson’s disease pathology puzzle

An international consortium identifies and validates cellular role of priority Parkinson’s disease drug target, LRRK2 kinase, in a new study, illuminating a novel route for therapeutic development and intervention testing for Parkinson’s, the second most common neurodegenerative disease after Alzheimer’s.

Source:: Science Daily

Investigators from MJFF, the Max Planck Institute of Biochemistry in Germany, the University of Dundee in the United Kingdom, GlaxoSmithKline and Merck & Co., Inc. published a paper today detailing that connection in the online, open-source journal eLife. The team discovered that LRRK2 regulates cellular trafficking (moving cellular parts around and into/out of the cell) by deactivating certain Rab proteins.

"Identification of Rab proteins as a LRRK2 substrate presents a tool to measure the impact of drugs in testing. This critical component will advance development of these therapies to slow or stop Parkinson's disease, patients' greatest unmet need," said Marco Baptista, PhD, MJFF senior associate director of Research Programs.

Mutations in the LRRK2 gene are the greatest known genetic contributor to Parkinson's disease, accounting for one to two percent of all cases of PD and more in certain groups such as those of Ashkenazi-Jewish decent. Pharmaceutical companies are developing drugs against LRRK2 to correct the effects of those mutations and treat PD. While especially promising for people with a LRRK2 mutation, there is potential that such a treatment would help people without that genetic link, as well.

This connection of LRRK2 to Rabs is an important step for Parkinson's drug development for three reasons:

It tells us more about LRRK2 biology and opens new roads to research. With this dot connected, we can look for other players that may be impacted by Parkinson's dysfunction.

It gives us another thing to measure. LRRK2 has traditionally low activity levels, so measuring its action and the impact of drugs has been difficult. Rabs can act as a secondary measure to see if a drug against LRRK2 is having an effect on correcting the cellular process.

It points us to a potential new drug target. If LRRK2 dysfunction then leads to Rab dysfunction, we may be able to target Rabs to correct that problem and stop Parkinson's disease.

"The pathological cascade leading to brain diseases such as Parkinson's likely includes many cellular players," said Matthias Mann, PhD, director of the Department of Proteomics and Signal Transduction at the Max Planck Institute of Biochemistry. "The identification of this LRRK2 substrate gives us a central piece in this puzzle and another potential place to intervene in the disease process."

One of the key roles of our Foundation in the Parkinson's research field is to unite all-star teams like this to problem solve around priority drug targets such as LRRK2. The consortium used a combination of tools developed by the partners — pre-clinical models from MJFF and GlaxoSmithKline (GSK) and drug candidates from GSK and Merck — and expertise in state-of-the-art technologies such as mass spectrometry, an analytic chemistry technique. These tools, and the collaborative spirit that united the partners, were necessary to make this finding.

"This unique model of collaboration and our systematic approach across laboratories using advanced technologies and layers of confirmation provide a firm foundation from which to continue this line of investigation and further refine our understanding of the LRRK2 Rab relationship," said Dario Alessi, PhD, director of the Protein Phosphorylation and Ubiquitylation Unit at the University of Dundee.

With additional MJFF funding, this group now is working to further characterize the Rab proteins modified by LRRK2 and to understand how an imbalance in cellular trafficking leads to the degeneration of neurons seen in Parkinson's disease.

Interested in Parkinson's genetics research? Take this survey to see if you may be eligible for the Parkinson's Progression Markers Initiative, an MJFF-sponsored study that seeks to better understand the genetics of PD.

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Connecting the Dots between Parkinson’s Proteins

By Maggie McGuire Kuhl

The cellular processes that keep us alive and healthy require thousands of microscopic players — proteins and enzymes and other workers on the line to tweak this, add that and keep us breathing and moving. Medical researchers try to name those workers and plot that line so that when something goes wrong, they know who may be involved and where they can intervene to fix the process.

Today a group of researchers led and funded by The Michael J. Fox Foundation (MJFF) have connected the dots between one of the most well-known workers in Parkinson’s disease (PD), the LRRK2 protein, and another set of proteins called Rabs.

Investigators from MJFF, the Max Planck Institute of Biochemistry in Germany, the University of Dundee in the United Kingdom, GlaxoSmithKline and Merck & Co., Inc. published a paper today detailing that connection in the online, open-source journal eLife. The team discovered that LRRK2 regulates cellular trafficking (moving cellular parts around and into/out of the cell) by deactivating certain Rab proteins.

“Identification of Rab proteins as a LRRK2 substrate presents a tool to measure the impact of drugs in testing. This critical component will advance development of these therapies to slow or stop Parkinson’s disease, patients’ greatest unmet need,” said Marco Baptista, PhD, MJFF senior associate director of Research Programs.

Mutations in the LRRK2 gene are the greatest known genetic contributor to Parkinson’s disease, accounting for one to two percent of all cases of PD and more in certain groups such as those of Ashkenazi-Jewish decent. Pharmaceutical companies are developing drugs against LRRK2 to correct the effects of those mutations and treat PD. While especially promising for people with a LRRK2 mutation, there is potential that such a treatment would help people without that genetic link, as well.

This connection of LRRK2 to Rabs is an important step for Parkinson’s drug development for three reasons:

It tells us more about LRRK2 biology and opens new roads to research. With this dot connected, we can look for other players that may be impacted by Parkinson’s dysfunction.

It gives us another thing to measure. LRRK2 has traditionally low activity levels, so measuring its action and the impact of drugs has been difficult. Rabs can act as a secondary measure to see if a drug against LRRK2 is having an effect on correcting the cellular process.

It points us to a potential new drug target. If LRRK2 dysfunction then leads to Rab dysfunction, we may be able to target Rabs to correct that problem and stop Parkinson’s disease.

“The pathological cascade leading to brain diseases such as Parkinson’s likely includes many cellular players,” said Matthias Mann, PhD, director of the Department of Proteomics and Signal Transduction at the Max Planck Institute of Biochemistry. “The identification of this LRRK2 substrate gives us a central piece in this puzzle and another potential place to intervene in the disease process.”

One of the key roles of our Foundation in the Parkinson’s research field is to unite all-star teams like this to problem solve around priority drug targets such as LRRK2. The consortium used a combination of tools developed by the partners — pre-clinical models from MJFF and GlaxoSmithKline (GSK) and drug candidates from GSK and Merck — and expertise in state-of-the-art technologies such as mass spectrometry, an analytic chemistry technique. These tools, and the collaborative spirit that united the partners, were necessary to make this finding.

“This unique model of collaboration and our systematic approach across laboratories using advanced technologies and layers of confirmation provide a firm foundation from which to continue this line of investigation and further refine our understanding of the LRRK2 Rab relationship,” said Dario Alessi, PhD, director of the Protein Phosphorylation and Ubiquitylation Unit at the University of Dundee.

With additional MJFF funding, this group now is working to further characterize the Rab proteins modified by LRRK2 and to understand how an imbalance in cellular trafficking leads to the degeneration of neurons seen in Parkinson’s disease.

Interested in Parkinson’s genetics research? Take this survey to see if you may be eligible for the Parkinson’s Progression Markers Initiative, an MJFF-sponsored study that seeks to better understand the genetics of PD.

Source:: Fox Feed Blog

Keeping “InMotion” to Combat Parkinson’s Disease

By Shari-Liane Sangster

It is just weeks into the New Year, and Team Fox members are making 2016 count, through a focus on fitness and wellness. Patient Council and Team Fox member, Dr. Karen Jaffe, is both a physician and PD patient who understands the importance of a holistic approach to well-being for those living with movement disorders. This inspired her to become a founding partner of InMotion, located in Cleveland, Ohio.

Now in its second year of operation, InMotion is setting a precedent for self-care through education, exercise and healing arts. Dr. Jaffe shared the impact she has seen the center have on her local community:

1. What was your motivation behind becoming an InMotion founding partner?

After being diagnosed with PD, I began looking for ways to reduce my symptoms. As a physician and a patient, I was very interested in how beneficial and important the role of exercise played in my well-being, yet there were no formal exercise programs for people with PD in my community. It is my belief that while we wait for a cure, people living with PD would benefit greatly from the development of a community wellness center one that was designed for all ages and all levels of ability.

2. Tell us more about InMotion and its mission.

InMotion is a diverse nonprofit that provides those affected by PD and other movement disorders a place to turn for physical, emotional and spiritual support, empowering them to take charge of their well-being. It offers a variety of exercise classes ranging from cycling to boxing that help clients strengthen their bodies. We have Reiki and massage, as well as art and music therapy to soothe the mind and spirit. This is complemented by our Compassionate Peers program and support groups for people living with Parkinson’s and their care partners. We also host expert presentations to help bring the latest movement disorder research and news to light.

With the vision of my founding partners, Allan Goldberg, Lee Handel, Dr. David Riley and Ben Rossi, the ​board of directors and staff have made the impossible possible building a community ​center where the stigma of PD is left at the door, and all services are free to patients and their care partners.

3. What role has the Center played in your local Parkinson’s community?

InMotion has provided a common ground for those of us living with PD, while empowering family and friends with the knowledge they need to be better able to support loved ones. It’s provided fresh energy and hope, which in turn reinvigorates entire families.

Every day we see InMotion’s clients welcome in new PD patients, many of whom have not even thought about exercising in years, and they are reaching out to each other to continue the circle of support, creating new friendships. That is what makes InMotion so special.

4. What advice would you give to someone who is interested in learning more ?

I​nMotion hopes to be a spark for other communities to begin planning their own PD Wellness Centers. We love sharing our story and welcome you to reach out to the InMotion staff and certainly plan to come to Cleveland for a visit to see it firsthand!

Inspired to learn more? Visit beinmotion.org and view the InMotion informational video!

Source:: Fox Feed Blog

For Parkinson’s Disease, Dance May Improve Symptoms and Self-Expression

By Nancy Ryerson

Dance instructor Linda Berghoff was first diagnosed with Parkinson’s disease (PD) 10 years ago.

“When I was diagnosed, the thought that I would no longer dance again terrified me,” she told NPR. “I’d be stripped of the thing I love the most.”

Today, she teaches dance in Venice, CA as part of Dance for PD, a program that offers dance classes specifically tailored for people with Parkinson’s. Thousands of people around the country have participated since the program began 15 years ago.

The combination of dancing and Parkinson’s disease may not seem intuitive. As movement becomes more painful or difficult, people with Parkinson’s disease have a tendency to move less. A recent study suggests that decreasing physical activity can make motor symptoms worse. Likewise, the study also found that regular exercise and moving more during the day can help improve motor symptoms.

Researchers wonder if dance is just another exercise option, or if it might hold unique benefits for people with Parkinson’s. Many Dance for PD participants report that the classes help them improve balance and flexibility, and small scientific studies suggest the same.

The self-expression involved in dancing can also be meaningful. Parkinson’s disease symptoms sometimes impact facial expressions and body language. The rhythm of dance can make movement easier and more fluid. Plus, as Berghoff can attest, dance can simply be fun.

Dr. Pietro Mazzoni, who teaches neurology at Columbia University, is digging deeper into whether that emotional layer adds something important. NPR spoke with Dr. Mazzoni about his latest research:

One of the theories he’ll be testing is that people with Parkinson’s move less because the disease triggers more than tremors and other physical symptoms — it also robs them of their ability to enjoy moving.

“I’ve heard patients spontaneously describe the beginning of their symptoms using language like, ‘I didn’t enjoy walking with my husband anymore,'” Mazzoni says. “‘I could do it; it just wasn’t fun.'”

So Mazzoni’s work will look at psychological factors as well as physical ones. Then he’ll compare the dancers to people getting traditional physical therapy.

Overall, the latest research strongly suggests that any physical activity can help Parkinson’s disease symptoms, especially if you find an activity you’ll enjoy and stick with. If dance is one of your favorite activities, or if you’ve always wanted to learn, check out a Dance for PD class in your area. Local community centers may also offer classes specifically for people with Parkinson’s.

Source:: Fox Feed Blog

Researchers uncover how dopamine transports within the brain

The mechanics of how dopamine transports into and out of brain cells has been uncovered by researchers, a finding that could someday lead to more effective treatment of drug addictions and neurological disorders such as Parkinson’s disease.

Source:: Science Daily

Five Ways to Help Muscle Stiffness in Parkinson’s Disease

If your muscles often feel stiff and uncomfortable, you’re not alone. “Rigidity, or stiffness, is one of the most common symptoms of Parkinson’s,” says Rachel Dolhun, MD, a movement disorders specialist at The Michael J. Fox Foundation.

Stiffness can be uncomfortable and painful to deal with when trying to perform everyday activities, from getting up and cleaning to relaxing and sleeping. The discomfort and frustration from the inability to complete these tasks can contribute to other symptoms, such as fatigue and insomnia.

Our community shared the remedies that have helped them relieve rigidity.

1. Move more during the day. Increasing everyday movement can help improve motor symptoms, which in turn helps prevent stiff muscles. If you need any motivation or ideas, try these tips from our community on how to get more motion in your day.

2. Exercise. Having an exercise regimen is beneficial in not only muscle movement, but also in overall health. Though any kind of exercise such yoga, tai chi, running or dancing can be beneficial for people with Parkinson’s, studies suggest that high-intensity interval training may hold particular benefits for relieving muscle stiffness.

3. Try heat or a hot bath to relax muscles. Unwind while helping ease stiffness.
4. Try weight lifting. It’s not necessary to use heavy weights, but incorporating weight resistance into your exercise routine and slowly increasing the weight amount can strengthen your muscles and ease movement.
5. Consider yoga. Studies suggest that yoga has particular benefits for people with Parkinson’s disease, including for increasing flexibility and easing rigidity. Yoga may help improve range of motion in the shoulders, hips and spine.
Bonus Tip: Talk to your doctor. If muscle stiffness is very painful and is affecting your everyday life, consult with your doctor. You may want to talk about changes in medication and different therapies that may help manage your rigidity.

Source:: Fox Feed Blog

This year, I joined 67 other Disney runners — nearly twice as many as last year — who collectively raised $67,000 (and counting!) for PD research. Our team included 5K, 10K, half marathon and marathon runners, plus a few self-professed "crazies" (myself included) who tackled the Dopey Challenge (running all four events on consecutive days) or the Goofy Challenge (running the half and full marathon on back-to-back days).

Each of the four races starts well before sunrise and truly captures the Disney experience! Runners take off from the Epcot theme park and make their way through the Disney properties. It doesn't matter who you are or how old you may be — turning that corner and running toward the iconic Cinderella's Castle is a big dose of Disney magic.

On Saturday, I had the privilege of running the half marathon with some pretty inspiring people, including three Team Fox members who live with PD — Jimmy Choi, Joyce Chu and Sabrina Soto Molina. Another fierce Fox runner was Lauren Everly, who completed the half with her mother. Together, they returned to a place of many family memories in honor of their beloved father and husband, Lew Everly.

Sunday brought the marathon. For some, their first and only event, for me, the grand Dopey finale! At mile 22 I hit a wall. It was hot and humid and I had already run 44.4 miles since the first event. Then I looked down at my jersey and thought about why I run with Team Fox: my grandpa, the Ryans, the Chois, Papa Paddock. I thought about how John Lipp, diagnosed with PD in June 2015, was on the course with me, rocking his first marathon. And I knew I could reach that finish line. Not long after I got my second wind, I heard Team Fox staffers Stephanie Paddock and Liz Diemer, quite possibly the best cheerleaders anyone could ask for. Their energy was infectious and it carried me all the way to the end of my 48.6-mile journey.

After the finish line, I went back to the course to cheer on my teammates. Seeing my fellow Team Fox members rounding that final corner reminded me that we are all in this together and we WILL find a cure. I am already counting down the days until I can represent Team Fox at the Walt Disney World Marathon in 2017 because Disney brings the Team Fox family together.

Editor's Note: Seth Manthey is a Team Fox Mentor who will be joining the MJFF Staff in February 2016. We are thrilled to have him join the team. To learn more about the Disney Marathon Weekend and other Team Fox athletic events visit the athlete landing page.

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Bringing the Team Fox Family Together with Some Disney Magic

Like Walt Disney’s beginning, my adventures with Team Fox also started with a mouse. In 2014, I first laced up my shoes for Team Fox and ran the Walt Disney World Marathon in memory of my grandfather, who lived with Parkinson’s disease (PD) for 25 years.

This year, I joined 67 other Disney runners — nearly twice as many as last year — who collectively raised $67,000 (and counting!) for PD research. Our team included 5K, 10K, half marathon and marathon runners, plus a few self-professed “crazies” (myself included) who tackled the Dopey Challenge (running all four events on consecutive days) or the Goofy Challenge (running the half and full marathon on back-to-back days).

Each of the four races starts well before sunrise and truly captures the Disney experience! Runners take off from the Epcot theme park and make their way through the Disney properties. It doesn’t matter who you are or how old you may be — turning that corner and running toward the iconic Cinderella’s Castle is a big dose of Disney magic.

On Saturday, I had the privilege of running the half marathon with some pretty inspiring people, including three Team Fox members who live with PD — Jimmy Choi, Joyce Chu and Sabrina Soto Molina. Another fierce Fox runner was Lauren Everly, who completed the half with her mother. Together, they returned to a place of many family memories in honor of their beloved father and husband, Lew Everly.

Sunday brought the marathon. For some, their first and only event, for me, the grand Dopey finale! At mile 22 I hit a wall. It was hot and humid and I had already run 44.4 miles since the first event. Then I looked down at my jersey and thought about why I run with Team Fox: my grandpa, the Ryans, the Chois, Papa Paddock. I thought about how John Lipp, diagnosed with PD in June 2015, was on the course with me, rocking his first marathon. And I knew I could reach that finish line. Not long after I got my second wind, I heard Team Fox staffers Stephanie Paddock and Liz Diemer, quite possibly the best cheerleaders anyone could ask for. Their energy was infectious and it carried me all the way to the end of my 48.6-mile journey.

After the finish line, I went back to the course to cheer on my teammates. Seeing my fellow Team Fox members rounding that final corner reminded me that we are all in this together and we WILL find a cure. I am already counting down the days until I can represent Team Fox at the Walt Disney World Marathon in 2017 because Disney brings the Team Fox family together.

Editor’s Note: Seth Manthey is a Team Fox Mentor who will be joining the MJFF Staff in February 2016. We are thrilled to have him join the team. To learn more about the Disney Marathon Weekend and other Team Fox athletic events visit the athlete landing page.

Source:: Fox Feed Blog

Ask the MD: Exercise and Parkinson’s

By Rachel Dolhun, MD

Regular exercise is important for anyone and may be especially important for people with Parkinson’s disease (PD). In this video, I discuss the benefits of physical activity, give tips on starting and maintaining a workout regimen, and cover the latest research on exercise’s effect on PD.

Having a hard time getting motivated to exercise and keep up activities? Apathy is a symptom of Parkinson’s disease, and I talk about strategies to overcome these feelings in another recent “Ask the MD” blog post.

Visit the “Ask the MD” webpage regularly for information on Parkinson’s and related topics. The blog and video series is an educational resource for people with PD and their loved ones who are navigating life with Parkinson’s.

about or watch a webinar on exercise and Parkinson’s.

The “Ask the MD” series is supported by Acorda Therapeutics. While our generous sponsors make the “Ask the MD” program possible, their support does not influence MJFF’s content or perspective.

Source:: Fox Feed Blog