Midwest Young Onset Parkinson Conference

While Parkinson’s disease most commonly hits patients later in life, it also impacts younger people. For that group of people and their families, Team Theracycle would like you to know about an Ohio event upcoming in mid-November 2012: The Midwest Young Onset Parkinson Conference.

Our friend, Julie Sacks, Director, of the APDA National Young Onset Center in Winfield, IL was kind enough to provide details below.

If you’re in the midwest, certainly worth attending. If not — please consider making a donation to support the Conference.

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The American Parkinson Disease Association (APDA) National Young Onset Center and the National Parkinson Foundation (NPF) will hold the 7th in a series of young onset conferences in Cincinnati, OH – November 16-17, 2012.

Yes, you did read that correctly, it is a conference for young people with Parkinson’s disease (PD).  Many people are still don’t think of the terms young and Parkinson’s as ones that go together, yet up to 15% of the  1.5 million Americans with the disease, are considered “young onset.”

What exactly does “young” mean when it comes to PD?  From a medical perspective, “young onset” is strictly defined as diagnosis under the age of 40. It is not uncommon, though, to see it defined as under the age of 50 (sometimes even 60).  As a general rule, people who are working full-time at the time of diagnosis will consider themselves “young onset.”

People with young onset Parkinson’s disease tend to experience a slower progression of the disease and a smoother course; however, they live with it for a much longer period of time than those diagnosed later in life. As a result, it is critical that young people with Parkinson’s disease and their families attend to issues such as long-term medication management, family relationships, and planning for the future from a financial and legal perspective.  The upcoming Midwest Young Onset Parkinson Conference will include presentations by experts in these areas and more.

The conference begins the evening of Friday, November 16, with a Meet and Greet Reception facilitated by local Parkinson’s advocate, Ben Contra, and featuring an “Ask the Doc/Open Mic – Q&A Session with Dr. Alberto Espay.  Friday night’s program will be interactive, offering participants an opportunity to meet others who, like them, are managing the disease at an early age.

The conference will continue with a full agenda of speakers on Saturday, November 17.  If you are interested in attending the conference, visit our Website to view the agenda or register now. For those unable to travel to Cincinnati, keynote presentations on Saturday will be Webcast live via the Internet.  Pre-registration for the Webcast is recommended.  Although the program is geared toward people with young onset Parkinson’s disease, much of the content is relevant to people of all ages with PD.

Both sponsoring organizations provide programs and services for people with Parkinson’s disease, their family members and healthcare providers.

For additional information, please contact the APDA National Young Onset Center at 877.223.3801/apda@youngparkinsons.org or the National Parkinson Foundation at 800.4PD.INFO/contact@parkinson.org.

Fun Summer Exercises for Young Students with Movement Disorders

When people think of the various movement disorders like Parkinson’s disease, they usually envision an elderly man or woman. After all, Parkinson’s is mostly common among people over the age of 50. However, young “college-aged” people—those roughly between 21 and 29—can get diagnosed with the movement disorder at their ages too.  While those with “young onset” Parkinson’s disease typically have a slower progression of the disease because they’re generally in a healthier state, young people can be active in slowing the progression and reducing the impact of PD symptoms through regular physical exercise. As an article on the website of the National Young Onset Center of the American Parkinson Disease Association (APDA) begins “The one of the most powerful tools….with which to fight PD and its degenerative nature.”

Not all exercise needs to be done within the confinements of a campus gym. To learn a few physical activities that can benefit you this summer, continue reading below.

Swimming

Let’s get the most obvious one out of the way first—a dip in the pool can help relieve you from the sun’s rays this summer, but it can also help relieve you of some of your movement disorder symptoms. Plus it’s free if you have access to a neighborhood pool or are fortunate to have one in your backyard. The true key to getting the most out of your swim however is periodically changing your strokes, speed, and opening and closing your eyes. This will not only help challenge and strengthen your motor skills, but this kind of physical activity can also increase your heart rate much quicker and help condition your lungs. Remember that sticking to lap swimming alone is not recommended because it forces you to be somewhat automated, which isn’t good for your condition.

Zumba

This Latin fitness dance craze can be found in just about every gym across America, but if you want to reap the health benefits while enjoying some fresh air, there are hundreds of instructors who teach their Zumba lessons outdoors at local parks. Do a little Internet searching and you’re likely to find one near you. Zumba is beneficial because it changes both tempo and direction, which is a type of exercise you need to properly enhance your motor skills. Warning: it can be a tad bit vigorous for some, but you don’t need to work at the same pace as other students.

Beach Volleyball

Last but not least is playing recreational beach volleyball. Like the other two forms of physical activity mentioned above, playing a light game of volleyball can help move and stretch various muscles in your body since it requires you to move around quite a bit.  Volleyball also helps with balance and adjustment. So the next time you take a trip to the beach, get in a game or two.

College Students with Parkinson's disease playing Volleyball

 

About the Author
Nadia Jones is an education blogger for onlinecollege.org. She enjoys writing on topics of education reform, education news, and online learning platforms. Outside of the blogging world, Nadia volunteers her time at an after school program for a local middle school and plays pitcher for her adult softball team. She welcomes your comments and questions at nadia.jones5@gamail.com.

 

 

 

Resource Guide for Young Onset Parkinson’s

While the average age of onset of PD is estimated at 60 years of age, between 5-10% of Parkinson’s patients contract “Young Onset” Parkinson’s disease (between the ages of 20 and 50).

The American Parkinson Disease Association (APDA) is the only Parkinson’s association in the U.S. with a Center dedicated to meeting the needs of those with young onset Parkinson’s disease.

The Theracycle Blog went to Julie Sacks, LCSW — Director, APDA National Young Onset Center in Winfield, IL (USA) for her advice and insights for the YOPD population:

Julie shares this comment:

“Discovering that you have Parkinson’s disease, especially when you are young, is overwhelming. Even if you’ve suspected it for some time (and it’s a relief to finally know what you’re dealing with) a confirmed diagnosis is still a shock and many people don’t know where to turn for support.”

In addition to educating people about the disease itself, the APDA National Young Onset Center ( http://www.youngparkinsons.org) has an online Resource Guide that consists of low-cost or no-cost programs and services available to help people manage other areas of concern such as: healthcare, mental health, insurance, employment, disability and finances.  It is easily accessible online at www.youngparkinsons.org/resource-guide.

This Resource Guide was created in order to direct people with Parkinson’s to reliable, affordable services. It was also designed to be interactive, so don’t hesitate to share your experience(s) with currently listed resources or recommend new ones.  The more involved the community is in growing the Resource Guide the more helpful it will be.

Julie let us know that members of the Center’s staff are also available Monday – Friday (9am-5pm CST) to discuss resources by phone at 877- 223-3801.

Beyond its informative website and Resource Guide, YoungParkinsons.org also maintains the excellent Young Parkinson’s Blog and publishes a free monthly eNewsletter.

Dedicated since 1961 to “ease the burden and find a cure for Parkinson’s disease,” the APDA is a major leader in research/education/public education and support for patients and families with PD. The Theracycle Team highly commends the APDA and its National Young Onset Center for their good works, and recommends their helpful resources and tools.