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!

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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

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Climbing Mt. Kilimanjaro and other Parkinson’s Summits to Conquer

One of the blogs on our blogroll is “About Parkinson’s Disease” — an online destination we stop by from time to time. Operated by Robert Rodgers, Ph.D –who launched Road to Recovery from Parkinsons Disease back in 2005, this blog highlights five years of continuous interviews with people who have Parkinson’s Disease and which reveal there are many therapies that help people reverse symptoms.

Robert was inspired in his mission by the experience of his own mother who lost her battle with Parkinson’s in 1998.  Since then Robert is on a daily path to search for natural therapies that are safe and cause no harmful side effects. As he puts it: “I hold the belief that the body knows how to heal itself. It just needs a little help remembering how.”

While I highly recommend you check out Robert’s book “Road to Recovery From Parkinson’s Disease”, and read the variety of posts on his excellent About Parkinson’s Disease blog, one of his many interviews with PD people stands out for me….

Nan Little’s 2011 description of the adventure she and her husband experienced climbing Mt. Kilimanjaro with a group including climbers with Parkinson’s disease and others with multiple sclerosis inspired us to republish it here on our blog.

Many have written about their path through Parkinson’s– Nan Little’s led to the summit of the tallest mountain in Africa and her encouraging words:
“You don’t have to climb Kilimanjaro to be empowered…you can just get on a bike to experience freedom from some symptoms.”

Here from Robert Rogers’ blog is  Nan Little’s memoir of her inspiring trip to the summit and beyond…

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Jeff Jennings: “Despite Parkinson’s – what you can believe, you can achieve”

The ruggedly handsome man you see here is 51 year old Jeff Jennings of Greenville, South Carolina. While Jeff played football in college and competed in distance running (including the NYC Marathon in 1986), his life changed in 1996 when he was diagnosed with Parkinson’s Disease at the age of 35.

Since then, as Jeff describes his life— he’s been living on “PST (Parkinsons Standard Time).” While a PD diagnosis might discourage some people— not Jeff!

Today Jeff’s one of of the most prolific and inspirational Parkinson’s bloggers on the Web. Jeff describes blogging as ” great therapy to be able to expose some vulnerabilities, face fears and perhaps bare your soul to good friends, as well as perfect strangers.”

Jeff’s articles cover the broad canvas of his life and chronicle his light-hearted look at a life with Parkinson’s and occasional musings on “How do I live with this disease?”

Reading Jeff’s blog — I’m impressed with his strong spirit, his refusal to be prideful, and his constant optimism to triumph in the midst of adversity including his past adventure of DBS (Deep Brain Stimulation) surgery.

Jeff has written “for exercise therapy to work, there going to be those times (probably many) when a good ration of self discipline will be make all the difference.” He also comments that the mental issues are tougher than the physical ones.

Honoring Jeff’s fighting spirit, the Theracycle Blog is proud to publish this article, written and contributed by Jeff Jennings, titled:

Visualization – The Power To See A Successful Outcome

 

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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.

“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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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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