“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”

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First-person accounts of people now living better with Parkinson’s disease.

From time to time the Theracycle team sends out articles and materials that we think may be informative and helpful. Recently, we created a new eBook titled “First-person accounts of people now living better with Parkinson’s disease.”

This new eBook details the personal stories of five people with Parkinson’s who’ve been riding a Theracycle and are experiencing the benefits of exercising on their Theracycle. They’re not only seeing substantial reductions in symptoms, but also improving their quality of life.

If you’re interested in getting a copy of the eBook, send me an email and I’ll be happy to send you one: pr@exercycle.com

In the meantime, for a preview of the eBook click here to read the personal story of one of the 5 people profiled: Dave Davenport

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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.

 

Davis Phinney Foundation: Exercise helps people with Parkinson’s “live better” today

The Triumphant & Victorious Davis Phinney-- Theracycle's Hero

As a company who builds exercise bikes for people with Parkinson’s and other movement disorders, it should come as no surprise that Davis Phinney is a hero of ours!

For those who don’t know of him, Colorado-based Davis Phinney is a retired professional cyclist (and 1984 Olympic medalist) who at the age of 40 was diagnosed with early onset Parkinson’s 12 years ago. A perpetual motion machine, Davis has led bicycle tours and conducted cycle-related fundraisers for PD research for many years.

In 2004, he founded The Davis Phinney Foundation (DPF), which is dedicated to helping people with Parkinson’s disease to “live well today,” through educational programs, events and, the funding of research focused on exercise, speech and other quality of life therapies.

DPF-funded research includes support for multiple projects directed by Theracycle’s own official Medical Advisor, Boston University Prof. Terry Ellis, PT, PhD, NCS including her 2010 study: “Factors Associated With Exercise Behavior in People With Parkinson Disease.”

For all these reasons, it is with great pride, that we share this first guest blog post from the tremendous team at the Davis Phinney Foundation — among the most dedicated and enthusiastic Parkinson’s exercise ambassadors we know!

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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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Susie’s Theracycle Story: M.S. Cycling Therapy at Home

Theracycle Motorized Exercise Bike

One of the most fulfilling things about being part of our work is receiving unsolicited messages from customers on how Theracycle exercise has improved the quality of their lives.

Susie Feldmeyer of Pennsylvania has been living with progressive Multiple Sclerosis for 11 years, and wrote us recently saying:

“My life has changed IMMENSELY since receiving the Theracycle!! 
I have been on the bike everyday but one, and every single thing I do has changed for the better.”

When Susie’s nurse practitioner recently told her she loves her Theracycle so much she should sell them for us, Susie replied saying “If I could drive I would be going to every physical therapy and Neurologist office this side of Pennsylvania.”

Whether for MS, for Parkinson’s disease or stroke — Theracycle customers have weighed in with enthusiastic testimonials on benefits they’ve seen from Theracycle exercise. From people with movement disorders like spinal cord injuries, arthritis or obesity who are Theracycling at home, to physicians, physical therapists and fitness specialties who recommend it to their patients — the Theracycle is getting rave reviews and powering inspiring stories of individual determination!

While we try to be ‘non-commercial’ on The Theracycle Blog, we can’t resist sharing Susie Feldmeyer’s Theracycle Story, in her own inspiring words…

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Art & Laughter as Parkinson’s Therapies

Anne's "Painting with Parkinson's" Group

Innovative therapies for people with Parkinson’s disease are originating and being practiced all over the world. From Australia via the Pacific Northwest comes this write-up “Art, laughter are therapy for PD group.” Written by Anne Atkin — volunteer, public speaker, ambassador and librarian with Australia-based Parkinson’s Victoria. as well as author of a new book: “Living and Laughing with Parkinsons”

Anne began her first “Painting with Parkinson’s” group in 2007, parlaying her love of art and experience as a teacher into benefit for others with Parkinson’s. Anne’s article was orginally published in the Nov/Dec 2011 issue of The Parkinson’s Post, bi-monthly newsletter of the Northwest Parkinson’s Foundation (www.nwpf.org). The mission of this Seattle-based organization is “to establish an optimal quality of life for the Northwest Parkinson’s community through awareness, education, advocacy and care.”

Special thanks to Ruth Egger of the NWPF for permission to reprint the article.

Here’s Anne Atkin’s article “Art, laughter are therapy for PD group”

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Holiday Recommendations from an MD with PD

One of our favorite resources for events, programs and general information for the Parkinson’s community is the American Parkinson Disease Association.
Here’s a timely post from their National Young Onset Center written by Marshall “Dopadoc” Davidson— a New Jersey-based M.D. who was diagnosed with early-onset Parkinson’s disease back in 2005, when he was 44.

Beyond this article, Marshall runs a blog called “Dopadoc’s Parkinson’s Journal”  http://www.dopadoc.com and is worth a follow on Twitter: @dopadoc.

Here’s Marshall Davidson’s “New Years and Holiday Recommendations for Parkinson’s Sufferers”

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Delay the Disease – Exercise to Fight Parkinson’s Symptoms

Delay the Disease is a fitness plan and community-based exercise program designed to empower people with Parkinson’s disease (PD) to optimize their physical function.  Originating in Columbus, Ohio in 2007, Delay The Disease is quickly becoming a national phenomenon in the Parkinson’s prevention field, and is starting to become internationally acknowledged.

Delay the Disease founders (David Zid BA, ACE, APG and Jackie Russell, RN, BSN, CNOR) have expertise in working with individuals diagnosed with PD and offer training to other health care professionals nationally.  This program is based on current evidenced-based research, and Zid’s extensive experience with one/on/one training of people with PD.  Their goal is to demonstrate how exercise can change symptoms, foster optimism and allow individuals to maintain independence.  They believe that fighting this disease with hope is the key.

David and Jackie have spoken to over 20,000 People with Parkinson’s (PWP) and their families— at symposia, continuing education courses, and PWP workshops.

As PD affects the entire family, their programs focus on helping the individual, caring for the caregiver, and educating other healthcare professionals about the importance of Parkinson’s–specific exercise and therapy. They are passionate and enthusiastic that PD does not need to define a person; it can be managed with the appropriate “tools in the tool box of treatment”. And, as Jackie comments regularly “exercise is a very important tool.”

Delay the Disease is available in a book, and 2 DVDs. Learn more about Delay the Disease at www.delaythedisease.com.  Books and DVDs can be ordered from the website, or through Amazon.

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!