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.

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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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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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…

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Forced Exercise Improves Motor Function in Parkinson’s Disease Patients

A significant number of visitors to the Theracycle Blog have told us they want to learn more about “Forced Exercise” and how research on has shown that “Forced Exercise” (FE) can improve motor function in Parkinson’s disease patients.

An overview of the initial FE research is found in the Abstract of the 2009 article written by J.L, Alberts, A.L. Ridgel & J.L. Vitek researchers at the Department of Biomedical Engineering of the Cleveland Clinic for their article  published in the July-August 2009 issue of Neurorehabilitation and Neural Repair, the Journal of the American Society of Neurorehabilitation.   Read the Abstract of the article and see the online link to that article here…


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News: Theracycle driving Small Business Innovation

We’re excited to announce that our company has been awarded a coveted “Small Business Innovation Research” grant from the NIH to help advance our efforts to understand how using a Theracycle can help people who live with Parkinson’s Disease.

See our October 17, 2011 Press Release… Continue reading

The Promise of “Forced Exercise”

Jay L. Alberts, Ph.D. Edward F. and Barbara A. Bell Family Endowed Chair Department of Biomedical Engineering The Cleveland Clinic (Cleveland, Ohio USA)

While “Forced Exercise” sounds like something you’d have to endure as a member of a prison chain gang… it’s actually a very promising therapy introduced and validated by Jay Alberts, PhD — esteemed researcher at the Cleveland Clinic.

Dr. Alberts’ research and clinical trials have shown that cycling “done right” can significantly improve the conditions of people with Parkinson’s disease.

For more detail including video of a feature TV segment from NBC News on “Pedalling away Parkinson’s Symptoms” see our feature coverage of Cycling and Parkinson’s Disease.