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!

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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

##

 

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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“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.

 

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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Contact Congress Today to Save SBIR

Call or Email Congress NOW to Save SBIR

If you’ve been following the Theracycle Blog, you may know that we recently received a hard-to-land NIH-SBIR grant to fund research and product development of new Theracycles to benefit people with Parkinson’s disease..

What you may not know (but should)–  is that the 30 year old SBIR (Small Business Innovation Research) program is a political hot potato on Capitol Hill in Washington, D.C. Of real concern to us is the possibility of the expiration of SBIR programs on December 16, 2011!!

For all of you who share our belief in the importance of continued federal funding of SBIR, please read this urgent appeal from U.S. Senator Mary Landrieu with her clarion call for us to call or email our U.S. Representative to express our strong support to save SBIR…

Please Tweet this message to “Contact Congress Today to Save SBIR”  http://bit.ly/v01T87

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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.

Lianna Marie – Super Parkinson’s Family Caregiver

Lianna Marie & Her Mom (Val)

In recognition of National Family Caregivers Month, Theracycle would like to single out someone who stands out as an extraordinary caregiver:

Lianna Marie of Bellingham, WA, whose mother Val was diagnosed with Parkinson’s disease back in 1991. Since then, beyond providing extraordinary care for her mother, Lianna has become an extraordinary force of nature, driven to help families through their Parkinson’s journeys.

Among Lianna’s contributions:

  • Author and publisher of a valuable eBook:
    “Everything You Really Need to Know About Parkinson’s Disease”
    For $27 this book and the related bonus content that comes with a purchase, Lianna answers a huge number of common questions about life with PD, as well as tips, advice, stories, and words of encouragement and inspiration
  • Host and Moderator of the Parkinsons Disease Forum
    A vibrant online community, where people with Parkinson’s and those who care about them can connect online get help, advice, friendship and support.
  • Blogger and Editor of the AllAboutParkinsons.com Blog
    Beyond providing a platform for the Parkinsons Disease Forum, Lianna’s AllAboutParkinson.com blog serves up a steady stream of news and information, resource links and articles about PD.  This is definitely one to add to your blog list, and we’ll be adding it soon to the Theracycle bloglist of best Parkinson’s blogs!

Theracycle honors Lianna’s labors of love and her extraordinary example of a model caregiver. In recognition of Lianna’s past and ongoing efforts and in celebration National Family Caregivers Month, here’s her article 7 Helpful Tips To Help You Care For The Person You Know Or Love.”

Keep it up Lianna!

Groucho Marx: Parkinson’s Specialist

 

Marc Sherman is a 54 year old attorney who lives in Forrest Hills, NY. He describes himself as I “someone who loved childhood, and in a sense, never really left it.”

Diagnosed with Parkinson’s disease in 2006 (an event that Marc says “should have caused me to leave childhood and become an adult,” Marc Sherman puts his legal expertise to work for The People with Parkinson’s Advisory Council of the National Parkinson’s Foundation. Marc is also the host of the Living with PD blog where he discusses his experiences living with Parkinson’s, often through witty parodies…

Forget the Mayo Brothers… Marc turned instead to The Marx Brothers for their diagostic and clinical expertise in treating his Parkinson’s disease, as you’ll read in his latest post:

A Night At The Doctors

 

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