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.

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…

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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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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.

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.

 

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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