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.

****

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.

 

 

 

Parkinson’s Unity Walk Coming Up April 28

As we hope you know, the Theracycle team is an active supporter or organizations and initiatives that support fundraising for research for treatments of Parkinson’s disease. In that vein, we’d like to share the news of the 18th annual Parkinson’s Unity Walk, which is upcoming April 28. Hope many of you can participate/donate. VERY worthy cause and an inspirational event!  Keep Moving!!

More details in the this press release…
Continue reading

Using Video Games as Parkinson’s Therapy

Video games aren’t just for kids anymore. Movement heavy game systems, like the Nintendo Wii and the Xbox 360 Kinect, are the newest therapy treatment for sufferers of Parkinson’s disease and other movement disorders. But how do you go from bopping bad guys to therapy? Well…

The Wii is the first game system designed to make you move. With a movement sensitive remote control and active games, it can do almost anything. Additional parts, like a balance board and even a ‘skateboard’ can help PD sufferers with essential balance therapy.

The Xbox Kinect system is a good match for therapy for several reasons. It does not require the use of a remote, which is great news for those with trouble gripping. Instead, the Kinect uses your body as the remote, reading your movements and translating them onto the game screen.

But why go to all this effort? What’s wrong with traditional physical therapy? Well, for some it is simply too expensive. In this economy, with all the insurance issues, some people cannot afford traditional therapy. At least not as often as they need it. Also, transportation is an issue for some patients. So, why not offer a solution that they can do right in their own home.

Not only do video games allow patients to get therapy in their homes whenever they want, the games also encourage them to do more therapy then they would normally. Incentives such as points, stars, and levels help patients see what they are accomplishing, and the extended range of motion comes along with the added points.

At the University of California, researchers noted these improvements in the participants of their study. After 12 weeks of exercising with the assistance of video games, patients reported gains across several ranges of mobility:

  • 65% had longer strides
  • 55% had increased gait velocity
  • 55% reported improved balance

Patients also reported that they completed the exercises more frequently because they enjoyed the activities and perceived improvements to their health.

“The games require visual perception, eye-hand coordination, figure-ground relationships and sequenced movement, so it’s a huge treatment tool from an occupational therapy perspective,” says Dr. Herz, of the Medical College of Georgia.

The mental stimulation of video games cannot be ignored either.

Author and game designer Jane McGonigal believes that video games offer many benefits. She believes that “gaming is…one of the most productive ways we can spend time.” Her 2011 book “Reality is Broken: Why Games Make Us Better and How They Can Change the World” declares that games do a better job of provoking positive emotions, leading to achievement and positive reinforcement. McGonigal goes so far to prescribe an hour of gaming per day.

Keeping your mind and body active are the major obstacles confronting movement disorder sufferers. Video games might just offer a solution for that.

 

About the Author:

Kate Croston is a freelance writer, holds a bachelor’s degree in Journalism and Mass Communication. She writes guest posts for different sites and loves contributing business internet service related topics. Questions or comments can be sent to: katecroston.croston09@gmail.com.

 

Cycling away Parkinson’s tremors

Theracycle 200

If you or someone you love has Parkinson’s disease, I hope you’ve read our
eBook A New Therapy Brings Hope & Results to People with Parkinson’s Disease.

As a follow-on to that hopeful eBook, in February, we posted the first (of several to follow) personal accounts of people living with Parkinson’s Disease — the story of Dave Davenport.

Dave’s story and those of five others who’ve been riding a Theracycle and seeking substantial reductions in their PD symptoms are included in our newest eBook titled “First-person accounts of people now living better with Parkinson’s disease.”

If you’re interested in getting a copy of our “Living better with Parkinson’s disease” eBook, send me an email and I’ll be happy to send you one: pr@exercycle.com

From that eBook, here’s a first-person account from Deb Snow of Wisconsin, who was diagnosed with PD 5 years ago, but who tells us riding her Theracycle has helped her to “do everything I used to do.”

Read on for Deb’s story…

Continue reading

Tai Chi for Parkinson’s Disease

Discontent with drug treatments and Deep Brain Stimulation approaches, many people living with Parkinson’s disease are exploring and pursuing a wide range of therapies to improve their symptoms.

While The Theracycle Blog has extensively detailed how a “Forced Exercise” regimen of riding a Theracycle has benefited PD patients, worldwide—we think it’s important for our blog to cover other alternative therapies…

Dr. Patrick Massey, MD, PhD— an Illinois-based physician is a practitioner of advanced medical and physical therapies that combine what he describes as “the best of traditional and non-traditional medicine.”

Medical director of Complementary and Alternative Medicine for the Alexian Brothers Hospital Network, Dr. Massey runs ALT-MED, a helpful website with a patient-focused approach with useful information and resources.

Here’s a recent article from Dr. Massey with his professional opinion on how “Parkinson’s patients could benefit from tai chi”…

Continue reading

Life, Love, Relationships + Parkinson’s Disease

Kim & Rich Rosek

This week (first week of March 2012), Kim and Rich Rozek — the husband/wife team behind PD Talk Live!— are debuting a new weekly reality podcast on living with Parkinson’s Disease (PD):

Drawing on their experiences (since Rich was diagnosed with early-stage Parkinson’s circa 10 years ago,) the “Life, Love, Relationships and Parkinson’s” podcasts will give the couple’s personal perspective on living a high quality life and maintaining a successful marriage as they’ve navigated their family’s PD voyage.

Since Kim and Rich have “been there, done that,” they’re uniquely qualified to provide insights worth hearing.

To hear the podcasts and learn more about/and from Kim & Rich visit their Parkinsons.me website. Be sure to follow Rich on Twitter: @pdtalker.

Given that people are riding Theracycles across the country to alleviate their Parkinson’s symptoms, we look forward to listening!

Jim Wong: “How I Survived 18 Years of PD”

Californian Jim Wong was diagnosed with Parkinson’s Disease at age 42. Since his diagnosis he’s been a tireless champion for others with PD –someone we truly admire.

Educated as a bio-scientist at Princeton and Yale, Jim’s the past President of the California Parkinson’s Group, whom The Theracycle Blog has applauded in previous posts for its initiatives in PD dialogue, advocacy, education, and clinical participation.

Jim will be 61 in 2012, here’s his thoughts on how he survived 18 years of PD so far, with his recommendations for the  “Top 10 Things to do if you think you might have Parkinson’s, in chronological order”

Published originally on the Parkinson’s Movement Health Unlocked Blogsite in his article “How I survived 18 years of PD so far,” here (courtesy of Jim Wong) is his hard-won advice…. Take heed!

——————–

Top 10 Things to do if you think you might have Parkinson’s, in chronological order



By Jim Wong

1. Get every insurance policy you can (Life, Disability, Long-term care)

At the moment you are diagnosed, you lose all chance of getting more coverage.

2. Find a Movement Disorders Specialist 

You need an expert- not just your primary MD or a neurologist.

3. Optimize your living and working conditions for your best performance and safety 
An Occupational Therapist or Social Worker can survey your environment.

4. Find a local Support Group that suits you 

It helps to be with people who are walking in your shoes.

5. Participate in clinical trials 

I take 7000 pills a year, because people stepped up to test them. Pay this forward.

6. Keep a positive attitude 
Exercise, exercise, exercise – physical and mental;
Use it or lose it.

7. Tell people about your condition 
Don’t suffer alone in silence; Accept help when you need it.

8. Don’t work too long 

You will certainly do this.

9. Don’t drive too long 

You will certainly do this too.

10. Stay educated about the latest Parkinson’s research & therapies 

Everything is on the Internet, somewhere.
Knowledge is power and hope, day by day

##

 

“Top 10” Blogs: Best Blogs on Movement Disorders

One of the principal purposes of The Theracycle Blog is to identify helpful online resources for people with movement disorders. In that vein, here’s a post from guest blogger Alvina Lopez with her take of the “Top 10 Blogs on Movement Disorders.” As Alvina herself admits- this is an ‘admittedly incomplete’ list, we’d love to hear from YOU about other blogs that you’ve found and would like to share with the community.

Read on for Alvina’s listing of “Best Blogs on Movement Disorders”

Continue reading