“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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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.

 

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.

ZaggoCare helps patients + caregivers “keep it together”

Whether you’re a caregiver, family member, or patient — the process of keeping organized in the midst of any kind of medical ordeal is challenging to say the least. Whether someone’s just been diagnosed with an illness, is in the midst of treatment, or has an ongoing ‘adventure’ living with a chronic condition– it’s difficult, but essential to “keep it together” to effective in our own care, keep track over time, and feel in control.

While our blog rarely recommends products for purchase, here’s a helpful “tool” I can recommend personally…

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