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

##

 

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…

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

Is Exercise the New Drug for Parkinson’s Disease?

 In our earlier post, “Delay the Disease – Exercise to Fight Parkinson’s Symptoms” you met David Zid and Jackie Russell, the founders of Delay the Disease—an exercise program developed specifically for people with Parkinson’s disease.

Here in her first guest post for the Theracycle Blog, Jackie Russell provides her expert opinion on the topic “Is Exercise the New Drug for Parkinson’s Disease?”

 

 

 

Continue reading

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!

November is “National Family Caregivers Month”

In case you didn’t know it— November is “National Family Caregivers Month”.

According to the National Alliance for Caregiving, more than than 65 million people (29% of the U.S. population), provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

For 15 years, the National Family Caregivers Association (NFCA), has recognized and celebrated family caregivers. Identifying Family Caregivers! is the theme for National Family Caregivers Month 2011.

Theracycle is an ardent supporter of “National Family Caregivers Month,” and we hope you’ll join us in supporting the mission of the NFCA to educate, support, empower and speak up for the millions of Americans who give so much of themselves to provide for the health and well-being of a beloved family member.

To join or donate to the NFCA visit: http://www.nfcacares.org/join_nfca/

ZaggoCare helps patients + caregivers “keep it together”

Whether you’re a caregiver, family member, or patient — the process of keeping organized in the midst of any kind of medical ordeal is challenging to say the least. Whether someone’s just been diagnosed with an illness, is in the midst of treatment, or has an ongoing ‘adventure’ living with a chronic condition– it’s difficult, but essential to “keep it together” to effective in our own care, keep track over time, and feel in control.

While our blog rarely recommends products for purchase, here’s a helpful “tool” I can recommend personally…

Continue reading