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.

****

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.

Tai Chi for Parkinson’s Disease

Discontent with drug treatments and Deep Brain Stimulation approaches, many people living with Parkinson’s disease are exploring and pursuing a wide range of therapies to improve their symptoms.

While The Theracycle Blog has extensively detailed how a “Forced Exercise” regimen of riding a Theracycle has benefited PD patients, worldwide—we think it’s important for our blog to cover other alternative therapies…

Dr. Patrick Massey, MD, PhD— an Illinois-based physician is a practitioner of advanced medical and physical therapies that combine what he describes as “the best of traditional and non-traditional medicine.”

Medical director of Complementary and Alternative Medicine for the Alexian Brothers Hospital Network, Dr. Massey runs ALT-MED, a helpful website with a patient-focused approach with useful information and resources.

Here’s a recent article from Dr. Massey with his professional opinion on how “Parkinson’s patients could benefit from tai chi”…

Continue reading

Life, Love, Relationships + Parkinson’s Disease

Kim & Rich Rosek

This week (first week of March 2012), Kim and Rich Rozek — the husband/wife team behind PD Talk Live!— are debuting a new weekly reality podcast on living with Parkinson’s Disease (PD):

Drawing on their experiences (since Rich was diagnosed with early-stage Parkinson’s circa 10 years ago,) the “Life, Love, Relationships and Parkinson’s” podcasts will give the couple’s personal perspective on living a high quality life and maintaining a successful marriage as they’ve navigated their family’s PD voyage.

Since Kim and Rich have “been there, done that,” they’re uniquely qualified to provide insights worth hearing.

To hear the podcasts and learn more about/and from Kim & Rich visit their Parkinsons.me website. Be sure to follow Rich on Twitter: @pdtalker.

Given that people are riding Theracycles across the country to alleviate their Parkinson’s symptoms, we look forward to listening!

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!

——————–

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

##

 

“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”

Continue reading

Bookmarks for Parkinson’s e-Patients

 

e-Patient Dave

ePatient Dave (aka Dave DeBronkart) is one of my personal heroes. While many pay lip service to helping patients to help themselves– Dave is a synonym for “patient advocate,” who through his myriad activities, speaking engagements and informative epatientdave.com website is a tireless champion for patient engagement and source of ideas and inspiration on how to use the Web for better patient outcomes.

This week Dave up a post on his website on e-Patient Resources for Parkinson’s Disease, which provides some basic info that’s worth a look from anyone interested in PD. As I’ve known Dave for several years, I reached out to him to provide a more in-depth (but, admittedly incomplete) listing of some of the top online resources for people with Parkinson’s disease, as well as PD caregivers and professionals. Here’s (for those who follow The Theracycle Blog) is the list of Bookmarks for Parkinson’s e-Patients, that we prepared and sent to ePatient Dave…

Continue reading

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!

Continue reading

Parkinson’s Nutrition: Concerns & Recommendations

The Holiday Season is over!   With the New Year, it’s time to get back to healthy eating!

Proper nutrition for people with Parkinson’s disease is a recurring theme here at The Theracycle Blog.  Thus we’re glad to post a very informative write up on concerns and recommendations for Parkinson’s nutrition, courtesy of the California Parkinson’s Group (www.calparkinsons.org), whose mission is to “foster support and collaboration among friends and families with young onset Parkinson’s Disease through dialogue, education and involvement in the medical research community.”

Be sure to visit the CPG for a collection of useful PD materials and to participate in their forums: www.calparkinsons.org

Don't forget to eat your prunes!

Your mother always told you to “EAT YOUR PRUNES!” Read on to learn why and other helpful insights in “Significance of Nutrition in Parkinson’s” from our friends at the CPG.

Continue reading

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”

Continue reading