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.

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…
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New Parkinson’s Disease Therapy eBook

As you may know, The Theracycle is a motorized therapy bicycle uniquely designed for individuals with PD (and other movement disorders). Because the Theracycle is motorized, it allows individuals to easily maintain the consistent pedaling cadence of forced exercise therapy.

Research has shown that a therapy of assisted high-cadence cycling, referred to as “forced exercise,” significantly reduces the symptoms of Parkinson’s disease.

We’ve written and published an eBook that provides an overview of the Cleveland Clinic’s findings on forced exercise, as well as commentary from doctors and therapists about the therapy and their experiences.

This new eBook is titled:
A New Therapy Brings Hope & Results to People with Parkinson’s Disease

Click here to register and download our eBook to learn more about forced exercise or to share what you’ve learned with your doctor.

Boston Herald on Theracycle: “Parkinson’s sufferers will reap benefits”

Fans of the Theracycle will want to read this just-published (2-15-12) article written by Boston Herald business reporter Brendan Lynch titled “Exercise Bike Reinvented– Parkinson’s sufferers will reap benefits”  featuring an interview with Peter Blumenthal.

Read on below or see the article at the BostonHerald.com website at  bit.ly/wPBTRa

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Boston Herald
Exercise bike reinvented
Parkinson’s sufferers will reap benefits

By Brendan Lynch            Wednesday, February 15, 2012
http://www.bostonherald.com  |  Technology Coverage

 

Article URL: http://www.bostonherald.com/business/technology/general/view.bg?articleid=1403672

A Franklin company bought out of bankruptcy in 2002 has landed federal funding for its “forced exercise” technology — motorized exercise equipment — to help treat people suffering from Parkinson’s disease.

“It sounds counter-intuitive,” Theracycle CEO Peter Blumenthal told the Herald. “Why would you ever use an exercise bike with motors? But you can overcome the motors as you regain strength.”

Theracycle won a $200,000 Small Business Innovation Research grant to modify its bike to replicate a therapeutic effect caused by tandem bicycle riding discovered by a Cleveland Clinic study.

In August, the company plans to apply for a Phase II SBIR grant, which could be as high as $2 million, to prove the bike would be effective in treating Parkinson’s.

People with Parkinson’s or other mobility-limiting conditions, such as multiple sclerosis, stroke, cerebral palsy or spinal cord injuries, often don’t exercise at all because it’s so difficult, which exacerbates their condition.

“(Exercise) gives the same benefit a healthy individual gets, except it’s much more important,” Blumenthal said. “Since their bodies are so decimated, they get secondary conditions, like Type 2 Diabetes, poor circulation, stiffness.”

Blumenthal once owned the retail chain Frame King, but sold it in 1998 for “between $5 million and $10 million.” In 1999, he was struck by a car in Newton while riding a bike. He broke his neck, but was not paralyzed.

“When I started rehab I found it was impossible to use traditional exercise equipment,” he said. “I couldn’t do it.”

In 2002, a friend told him about The Exercycle Co. He bought the 60-year-old Rhode Island company out of bankruptcy for $150,000, moved it to Franklin, and changed its name to Theracycle to reflect its new status as a medical device.

The company, with about eight employees, is moving toward profitability, Blumenthal said, and sells the bikes to homes and hospitals for $3,000 to $5,500.

Blumenthal is confident in Theracycle’s market opportunity — there are 1.5 million people with Parkinson’s disease in the United States.

“If we could get 1 percent of that market, that’s 15,000 bicycles,” he said. “That becomes a $75 million business.”

Article URL: http://www.bostonherald.com/business/technology/general/view.bg?articleid=1403672

Copyright: Boston Herald

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.

 

Bicycling helping people with Parkinson’s curb their symptoms

Image Credit: Matt McClain/Washington Post

As its title suggests, a January 10, 2012 feature article in The Washington Post (Bicycling and other exercise may help people with Parkinson’s curb their symptoms,) states “while it cannot cure Parkinson’s, heavy-duty exercise shows promise for countering, even delaying, the inability to move that the disease causes.”

In her article, Post reporter Alice Reid details results that medical researchers and Parkinson’s patients are seeing from regular, intense exercise (such as rowing and cycling)

The article notes that the National Parkinson Foundation “emphasizes exercise as an important tool to fight the disease,” and “The Michael J. Fox Foundation for Parkinson’s Research has funded close to $3 million in exercise research.”

Jay Alberts, the Cleveland Clinic researcher best known for his landmark work on “Forced Exercise” (cycling for Parkinson’s therapy) is quoted throughout the piece. A ‘just-completed study’ conducted by Alberts in which patients rode indoor bikes for exercise benefits is featured prominently.

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Contact Congress Today to Save SBIR

Call or Email Congress NOW to Save SBIR

If you’ve been following the Theracycle Blog, you may know that we recently received a hard-to-land NIH-SBIR grant to fund research and product development of new Theracycles to benefit people with Parkinson’s disease..

What you may not know (but should)–  is that the 30 year old SBIR (Small Business Innovation Research) program is a political hot potato on Capitol Hill in Washington, D.C. Of real concern to us is the possibility of the expiration of SBIR programs on December 16, 2011!!

For all of you who share our belief in the importance of continued federal funding of SBIR, please read this urgent appeal from U.S. Senator Mary Landrieu with her clarion call for us to call or email our U.S. Representative to express our strong support to save SBIR…

Please Tweet this message to “Contact Congress Today to Save SBIR”  http://bit.ly/v01T87

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Theracycle: Part of Boston’s Leadership in Life Sciences

Theracycles "Made in Massachusetts" Help Drive Life Sciences Innovation

An 11/29/11 article in Mass High Tech titled “Report: Boston area is top U.S. life sciences hub” cites research from real estate services firm JonesLaSalle that
rates the metropolitan Boston area as the #1 region for established and emerging life sciences businesses (in comparison to other parts of the United States).

An excerpt from the JonesLaSalle 2011 Global Life Sciences Cluster Report reads “The [Boston] area enjoys seven times the number of workers in biotech R&D than the national average.” The area has more than 85,000 high-tech research employees and more than 340,000 hospital and medical employees.

The Mass High Tech article notes the Report “also highlights Massachusetts as the recipient home of 13 percent of all National Institutes of Health funding, with five of the top eight NIH-funded hospitals in the U.S. and the top five NIH-funded universities.”

As an NIH-funded Massachusetts small business, The Exercycle Company is proud to be part and parcel of the Boston-area’s preeminence as the top region for life sciences in the country.  While our operations might be considered small in comparison to some of the med-tech giants that operate in the Bay State — growing demand for our Theracycle (which powers proven exercise therapy for Parkinson’s disease), shows that we’re movin’ up!

Lianna Marie – Super Parkinson’s Family Caregiver

Lianna Marie & Her Mom (Val)

In recognition of National Family Caregivers Month, Theracycle would like to single out someone who stands out as an extraordinary caregiver:

Lianna Marie of Bellingham, WA, whose mother Val was diagnosed with Parkinson’s disease back in 1991. Since then, beyond providing extraordinary care for her mother, Lianna has become an extraordinary force of nature, driven to help families through their Parkinson’s journeys.

Among Lianna’s contributions:

  • Author and publisher of a valuable eBook:
    “Everything You Really Need to Know About Parkinson’s Disease”
    For $27 this book and the related bonus content that comes with a purchase, Lianna answers a huge number of common questions about life with PD, as well as tips, advice, stories, and words of encouragement and inspiration
  • Host and Moderator of the Parkinsons Disease Forum
    A vibrant online community, where people with Parkinson’s and those who care about them can connect online get help, advice, friendship and support.
  • Blogger and Editor of the AllAboutParkinsons.com Blog
    Beyond providing a platform for the Parkinsons Disease Forum, Lianna’s AllAboutParkinson.com blog serves up a steady stream of news and information, resource links and articles about PD.  This is definitely one to add to your blog list, and we’ll be adding it soon to the Theracycle bloglist of best Parkinson’s blogs!

Theracycle honors Lianna’s labors of love and her extraordinary example of a model caregiver. In recognition of Lianna’s past and ongoing efforts and in celebration National Family Caregivers Month, here’s her article 7 Helpful Tips To Help You Care For The Person You Know Or Love.”

Keep it up Lianna!

November is “National Family Caregivers Month”

In case you didn’t know it— November is “National Family Caregivers Month”.

According to the National Alliance for Caregiving, more than than 65 million people (29% of the U.S. population), provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

For 15 years, the National Family Caregivers Association (NFCA), has recognized and celebrated family caregivers. Identifying Family Caregivers! is the theme for National Family Caregivers Month 2011.

Theracycle is an ardent supporter of “National Family Caregivers Month,” and we hope you’ll join us in supporting the mission of the NFCA to educate, support, empower and speak up for the millions of Americans who give so much of themselves to provide for the health and well-being of a beloved family member.

To join or donate to the NFCA visit: http://www.nfcacares.org/join_nfca/