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

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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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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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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.

Boston Herald on Theracycle: “Parkinson’s sufferers will reap benefits”

Fans of the Theracycle will want to read this just-published (2-15-12) article written by Boston Herald business reporter Brendan Lynch titled “Exercise Bike Reinvented– Parkinson’s sufferers will reap benefits”  featuring an interview with Peter Blumenthal.

Read on below or see the article at the BostonHerald.com website at  bit.ly/wPBTRa

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Boston Herald
Exercise bike reinvented
Parkinson’s sufferers will reap benefits

By Brendan Lynch            Wednesday, February 15, 2012
http://www.bostonherald.com  |  Technology Coverage

 

Article URL: http://www.bostonherald.com/business/technology/general/view.bg?articleid=1403672

A Franklin company bought out of bankruptcy in 2002 has landed federal funding for its “forced exercise” technology — motorized exercise equipment — to help treat people suffering from Parkinson’s disease.

“It sounds counter-intuitive,” Theracycle CEO Peter Blumenthal told the Herald. “Why would you ever use an exercise bike with motors? But you can overcome the motors as you regain strength.”

Theracycle won a $200,000 Small Business Innovation Research grant to modify its bike to replicate a therapeutic effect caused by tandem bicycle riding discovered by a Cleveland Clinic study.

In August, the company plans to apply for a Phase II SBIR grant, which could be as high as $2 million, to prove the bike would be effective in treating Parkinson’s.

People with Parkinson’s or other mobility-limiting conditions, such as multiple sclerosis, stroke, cerebral palsy or spinal cord injuries, often don’t exercise at all because it’s so difficult, which exacerbates their condition.

“(Exercise) gives the same benefit a healthy individual gets, except it’s much more important,” Blumenthal said. “Since their bodies are so decimated, they get secondary conditions, like Type 2 Diabetes, poor circulation, stiffness.”

Blumenthal once owned the retail chain Frame King, but sold it in 1998 for “between $5 million and $10 million.” In 1999, he was struck by a car in Newton while riding a bike. He broke his neck, but was not paralyzed.

“When I started rehab I found it was impossible to use traditional exercise equipment,” he said. “I couldn’t do it.”

In 2002, a friend told him about The Exercycle Co. He bought the 60-year-old Rhode Island company out of bankruptcy for $150,000, moved it to Franklin, and changed its name to Theracycle to reflect its new status as a medical device.

The company, with about eight employees, is moving toward profitability, Blumenthal said, and sells the bikes to homes and hospitals for $3,000 to $5,500.

Blumenthal is confident in Theracycle’s market opportunity — there are 1.5 million people with Parkinson’s disease in the United States.

“If we could get 1 percent of that market, that’s 15,000 bicycles,” he said. “That becomes a $75 million business.”

Article URL: http://www.bostonherald.com/business/technology/general/view.bg?articleid=1403672

Copyright: Boston Herald

“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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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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Value of Massage for People with Parkinson’s Disease

Parkinson’s disease, which is also referred to as Parkinsonism is a disorder of the central nervous system, which progressively degenerates over time. In addition to its degeneration of the motor skills, Parkinson’s disease also causes rigidity of the muscles and stiffness of the body.

Tremors, slow movements, rigidity, poor balance, and difficulty in walking accompany this disease. Medications have been known to control some of the symptoms of the disease but many specialists believe that massage therapy aids patients afflicted with the disease. As such, massage therapy has been highly recommended and many patients have benefited from the positive effects of the treatment. There are many ways in which massage therapy has been found to be useful and are mentioned below.

Benefits of massage therapy for people with Parkinson’s

1. Reduction in muscle rigidity

When the brain’s production of dopamine is diminished, motor system nerves are unable to control the body coordination and movements. Massage therapy therefore becomes a natural choice for alleviating the muscle stiffness and rigidity. It is considered safe bodywork as long as the patient feels sensations on the area being massaged. A study titled “Parkinson’s Disease Symptoms are Reduced by Massage Therapy and Progressive Muscle Exercises,” conducted by researchers from the University of Miami and Duke University has revealed that Parkinson’s patients that were given 15 minutes of massage in the prone position and 15 minutes in the supine position showed marked improvement in the functioning of the degenerative spots. With massage therapy, stiffness and rigidity of the muscles are reduced as the nerves begin to relax.

2. Improved blood circulation

Whether for Parkinson’s disease or for any ‘normal’ stiffness of the body, massage has been found to be beneficial for tired muscles. When massage therapy is given to Parkinson’s patients, there is lessening of muscle tension, which helps blood vessels to dilate, and enhances the circulation of blood in the body. The improved blood circulation in the body helps to calm the nervous system, which in turn brings down the tremors evident in such patients.

3. Improved sleep pattern

Many Parkinson’s disease patients have poor sleeping patterns and this in turn affects them physically. Since massage therapy improves blood circulation and reduces muscular tension, this can often allow patients to sleep better. Massage can enable a restful sleep up to 10 hours and there is no wakefulness or restlessness during sleep. With proper sleep and rest the patient suffers less from the effects of the disease.

4. Improved physical stamina

As a brief from the National Parkinson Foundation titled “Massage Therapy: Is it for you?” suggests: one of the specific benefits that massage therapy can deliver for PD patients is an “increase in daily stamina.” As with some of the other aforementioned benefits, increased stamina can have a trickle down positive impact on other patient symptoms including an improved ability to exercise on a regular basis, which in turn will deliver other benefits such as mental and physical relaxation.

5. Confidence of the patient

Massage therapy not only improves blood circulation and sleep patterns, it also reduces the level of stress hormones. A lower level of stress can reduce the incidence of going into tremors or turning rigid and can improve the confidence level of the patient by a marked degree.

IMPORTANT: As all people are different, for maximum safety, anyone considering massage treatments or Parkinson’s disease should consult their physician before beginning massage, exercise or other alternative therapies for their recommendations and to prevent any contraindications.

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About the author:
Alia Haley is a blogger by profession. She loves writing on technology, health and parenting. A regular contributor to Pinstripe Magazine, some of her recent writing include an article on Exercise-induced asthma for DIYHealth, “Learning Toys for Toddlers” for Parenting Clan, “Social Media Policy” for Bloggodown.

 

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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