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A Tough Climb: Nan Little’s Parkinson’s Journey

coming apart

Many would find the book title “If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth?” intriguing. Few people, however, would understand its meaning.                                  

Nan Little, author of the aforementioned book, was diagnosed with Parkinson’s disease at the age of 62. Since then, writes Pamela Quinn, an interviewer for “PD Outliers,” Nan “has become well known around the Parkinson’s community for her bold expeditions across the world.”

A boxing buddy at Rock Steady gave me the book, but I was somewhat reticent about reading of Nan’s journeys around the world. I’d heard her speak at a conference a few years back. My impression of her talk was that she was saying “Look what I’ve done” rather than “Look at what exercising has done for me.” (In hindsight, it would be fair to say that there had been some envy on my part.)

According to Nan, exercising — mainly intense cycling — saved her life. And cycling across Iowa led her to the base and ultimately all the way to the top of Kilimanjaro. I wasn’t too many pages into the book before I overcame my first impression of her experiences, and by the end of Chapter 1, I was a fan.

Nan writes with honesty and transparency, sharing her reaction to being diagnosed with Parkinson’s in 2008 and relating how she became involved in cycling with the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI), a noncompetitive bicycle ride organized by the Des Moines Register. It was through RAGBRAI that she became involved with the Pedaling for Parkinson’s program, founded by Dr. Jay Alberts, a neuroscientist at the Cleveland Clinic, and Cathy Frazier, a woman living with Parkinson’s disease.

It was also because of RAGBRAI that Nan and her husband were asked to join a climb up Kilimanjaro in 2011. That climb, Nan says, was the hardest thing she had ever done, and it took a tremendous toll. However, she didn’t let that stop her feisty spirit, and she has since trekked to Annapurna Base Camp in Nepal and ridden in RAGBRAI 2012! 

Of her cycling and climbing experiences, Nan states: “The profound joy of dipping my bike wheel in the Mississippi, ascending Kilimanjaro and standing among fluttering prayer flags high in Nepal, gains greater meaning when people tell me my efforts inspire them to find strength to cycle, to exercise or to walk around the block. I do not believe that people can do anything they set their minds to. We have physical, mental and fiscal limitations. Nonetheless, it’s likely that we can be in control of our lives and our bodies more than we expect.”

Following are some of my favorite quotes from Nan’s book. I hope not only that they inspire you to read her book on an upcoming, blustery autumn day, but that they also give you hope.

  • “We can give PD a specific place in our world, but [we mustn’t give it] control over our lives.”
  • “I’m not going to tell you that everything’s going to be alright. I am going to tell you that [you have] grit.”
  • “People with neurodegenerative diseases are capable of far more than they expect.”
  • “The more you focus on pain the more debilitated and closed in you become.”
  • “We can’t control what happens to us but we can control our attitudes or how we respond.”

And my favorite:

  • “Forget PD — Go fly-fishing!”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Useful Fitness and Informational Resources for Parkinson’s Patients

internet resources

More than 10 million people are living with Parkinson’s disease around the world. While this number seems shocking, it also means that we have a lot of people fighting for change, relief, a cure, or a solution to some of the difficulties that Parkinson’s yields. Research and interest in Parkinson’s are making connections easier, and more and more gyms are offering Parkinson’s fitness programs. Whether you’re looking for fitness resources, a good book or blog, or educational platforms, the following internet links might offer some inspiration.

Fitness resources

Exercise is healthy for everyone, but there’s evidence that it helps Parkinson’s patients manage certain symptoms of the disease. Parkinson’s specific exercise classes are popping up all across the country. How do you find a group that fits your interests? What if you don’t have access to a Rock Steady Boxing location? Or what if boxing isn’t the right fit for you?

Adaptive Training Foundation

The Adaptive Training Foundation aims to empower its participants through high-intensity athletics and community building. Its programs — Redefine, Reignite, Redeploy — help adaptive athletes push themselves to new levels of fitness, compete successfully, and challenge themselves physically. The facility is located in Texas.

PD Movement Lab (New York)

Pamela Quinn opened the first PD Movement Lab in 2006 to explore Parkinson’s through dance. A patient herself, Quinn uses her background in dance to experiment with a variety of techniques in order to help her students find solutions to mobility issues. PD Movement Lab is a New York company with branches in Manhattan and Brooklyn, but the organization is expanding its online presence to make dance accessible to anyone with Parkinson’s.

Parkinson’s Cycling Coach

There’s evidence that pedaling really fast can help reduce Parkinson’s symptoms by up to 35 percent. The people at Parkinson’s Cycling Coach aim to train people to lead indoor cycling classes, which will help patients benefit year-round. Cycling can be done at home or with a group, indoors or outdoors. And if you’re looking for a goal, Pedaling 4 Parkinson’s is an annual race that takes place in Colorado. The proceeds are donated entirely to Parkinson’s research. Having an event to train for might give you a bit of inspiration.

Informational resources

As Parkinson’s progresses, it becomes more difficult to leave the house. Physical developments make transportation tricky, and sometimes you just don’t want to be seen struggling. Resources are out there. Whether you’re seeking information or a way to exercise on your own, the internet is full of incredible platforms.

American Parkinson Disease Association

The American Parkinson Disease Association (APDA) is a grassroots organization dedicated to fighting Parkinson’s by way of fundraising, education, and public elevation. ADPA provides current news that’s related to developments in the disease and offers a location finder to help you get in touch with Parkinson’s resources near you. Its website includes information that’s tailored to specialized communities, like veterans, first responders, bilingual patients, and early-onset patients (those diagnosed before the age of 50).

Stanford Medicine

Standford Medicine, in partnership with APDA, has an incredible community outreach webpage. It includes information on local support groups and exercise classes, and offers resources like fact sheets, books, exercise videos, and live-streaming fitness classes for a wider internet audience. The “Living with PD” category touches on topics like the effect of Parkinson’s on driving ability and shares the stories of individuals’ experiences with deep brain stimulation surgery. This is a terrific resource for those who want credible information about Parkinson’s.

The right stuff

Navigating change can easily become overwhelming, and everyone’s experience with the progression of Parkinson’s is different. This can make it hard to find resources that are relevant to your situation. With a click of the mouse, however, you can access a range of information sources and fitness programs that might help you manage your disease. These websites are good places to start.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Cleveland Clinic Researcher Gets $3M NIH Grant to Study Impact of Exercise on Parkinson’s Disease

impacts of exercise

A Cleveland Clinic researcher is getting a $3 million grant from the National Institutes of Health (NIH) to study the long-term impact of high-intensity aerobic exercise on Parkinson’s disease progression.

The five-year award goes to Jay Alberts, PhD, a staff member in the department of biomedical engineering and the director of the Cleveland Clinic Concussion Center, and vice chairman of health enabling technology and innovations. His research focuses on the central nervous system and upper extremity motor performance in PD patients, and the effect of behavioral and surgical interventions.

He was also the lead researcher for a clinical trial called CYCLE (NCT01636297), aimed at determining the effects of forced cycling on motor and non-motor performance, compared with voluntary cycling and a non-exercise control group. Begun in 2012, the randomized study, which included 100 participants, also assessed whether exercise improves brain activity.

Recently completed, the study showed that an eight-week high-intensity aerobic exercise program markedly enhances overall motor function, certain aspects of walking, and cognitive function in Parkinson’s patients.

The new study, touted as the first of its kind, will measure the effectiveness of a long-term CYCLE protocol in a home-based setting.

”Our previous work clearly indicates that aerobic exercise, such as cycling, in a controlled environment improves motor function over the course of eight weeks,” Alberts said in a press release. “This project is important in understanding how exercise can slow disease progression, and the translation of a laboratory-based protocol to the home of the patient. To bring an effective intervention from the Cleveland Clinic to the home of a patient outside of our zip code is an exciting next step in the treatment of Parkinson’s.”

Along with the University of Utah, the clinic will recruit 250 Parkinson’s patients who will be randomized to either a high-intensity home exercise or usual and customary care (UCC) group. Using stationery indoor bikes, the exercise group must exercise three times weekly for a year, while UCC participants will go about their daily lives. All participants will be evaluated for motor and non-motor function upon enrollment and at six and 12 months.

The volunteers will wear devices that will track overall activity levels. Exercise performance data will be used to determine whether a certain level of exercise can slow Parkinson’s progression. A positive determination would enable clinicians to make specific exercise recommendations to patients, and empower patients to play a more active role in disease treatment and management.

In general, researchers have determined that exercise is essential to helping Parkinson’s patients maintain balance, mobility, and the ability to perform daily routines.

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Parkinson’s Foundation Grants $1.5 Million to Programs in 38 States

Parkinson's Foundation grants

In support of local health, wellness and educational programs, the Parkinson’s Foundation is granting $1.5 million to Parkinson’s community programs in 38 states.

Grants range from $5,000 to $25,000, and focus on programs that either help underserved Parkinson’s disease communities, target newly diagnosed patients, or advocate for clinical trial education and participation.

“We are proud to announce these community grants and expand programs and resources in Parkinson’s communities across the entire nation,” said John L. Lehr, Parkinson’s Foundation president and CEO. “These grant recipients share our passion and commitment to making life better for people with Parkinson’s.”

In the past eight years, the organization has funded some 338 community-based programs that seek to meet unfulfilled patient needs.

A full roster of this year’s community grant awardees can be viewed here.

One of those recipients explained how the grant will benefit Parkinson’s patients in her community.

“We are deeply honored to have been awarded a Parkinson’s Foundation grant and are very excited at the opportunity to join current recipients in improving the everyday life of individuals with Parkinson’s,” Karen Weisinger of the Calvin Chin’s Martial Arts Academy in Newton, Massachusetts, said in a press release.

“Thanks to the Parkinson’s Foundation, we look forward to bringing this unique tai chi program to people with newly diagnosed PD,” she said.

Tai chi is an internal exercise system that combines breathing with slow, gentle movements to improve the flow of energy (chi) through the body, to quiet and calm the mind and emotions and improve overall health and well-being.

Tai chi has been found to be effective in reducing falls, which could be of extreme importance for those with Parkinson’s, who many times see their balance deteriorate as their condition progresses.

The Parkinson’s Foundation seeks to enhance life for patients by improving care and driving investigations toward a cure.

All funded programs are designed to help Parkinson’s patients live better-quality lives. They include education, wellness, dance, art, boxing, cycling, yoga, nutrition, caregiver support, and music therapy.

Researchers have found that Parkinson’s patients who exercise at least two-and-a-half hours a week also experience a slower decline in their quality of life. Specifically, more recent studies have focused on the concept of intense “forced” exercise, such as boxing, suggesting that certain types of exercise may be neuroprotective by actually slowing disease progression.

Yoga focused on mindfulness — a mental exercise focused on accepting oneself in the present — also has been found to lower anxiety, depression and motor impairment in people with mild-to-moderate Parkinson’s disease.

 

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Michael J.Fox Foundation Uses Parkinson’s Awareness Month to Promote Summer Events

summer fun for parkinson's

During Parkinson’s Awareness Month the Michael J. Fox Foundation (MJFF) wants to help those making summer plans turn their hobbies into a fundraiser for Parkinson’s disease research.

As part of the effort, the foundation has selected some of the best outdoors fundraisers taking place this year, including cycling, walking, running or swimming for Parkinson’s.

Anyone can register for a local event and help advance research toward a cure. There are options available for patients and their community to help the movement.

Fox Trot 5K Run/Walks

The foundation hosts an increasing number of Fox Trot 5K run/walks nationwide every year. This year, people can join the Orlando Fox Trot 5K run/walk on May 19 in Orlando, Florida, or the New York City Fox Trot 5K in Riverside Park, New York City, on Aug. 9.

If there is no 5K run/walk planned nearby, people may choose any race in their community and fundraise through Team Fox, or select other athletic and community-hosted events featured on the foundation’s website.

Tour de Fox Cycling Series

For those who prefer cycling, the Tour de Fox Cycling Series is back with two new events. Along with tour stops in Vancouver, British Columbia, Sonoma County, California, and Greenville, South Carolina, the tour will be heading to Southlake, Texas and Madison, New Jersey.

Pedaling 4 Parkinson’s

For those seeking an additional challenge, they can join a group of friends and meet in Denver, Colorado,  for Pedaling 4 Parkinson’s on June 16.

New England Parkinson’s Ride

The largest independent Team Fox will be joining the 11th annual New England Parkinson’s Ride, in Old Orchard Beach, Maine, on Sept. 8. All events host rides of different difficulty and distances, so that everyone can participate.

Escape from Alcatraz Triathlon

For those who would like to add water sports to the fund-raising challenge, there will be an “Escape from Alcatraz Triathlon” where participants can swim, bike and run their way closer to a cure for Parkinson’s. On June 3, Team Fox also will join the event.

The initiative’s goal is to get communities involved and help advance critical research to find a cure for this life-debilitating disease. Check here for more information about the events or other opportunities to participate in Parkinson’s Awareness Month.

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Source: Parkinson's News Today