Life is sweet at home

Parkinson’s Event Shares Message of Hope

By Leslee Jaquette, Andelcare Client Relations

The Parkinson's Disease Foundation estimates 7-10 million people worldwide live with the disease. Courtesy NW Parkinson's Foundation

The Parkinson’s Disease Foundation estimates 7-10 million people worldwide live with the disease. Courtesy NW Parkinson’s Foundation

As actor Michael J. Fox said, “We may have our individual Parkinson’s Disease, but we all share one thing – hope!”

At the recent Northwest Parkinson’s Foundation 2016 HOPE Conference® on Parkinson’s! the theme of hope permeated presentations, breakout sessions and informal conversations. Held at the Meydenbauer Center in Bellevue, some 300 individuals including people with Parkinson’s disease (PD), caregivers, clinicians and vendors gathered to share information and HOPE.

Through the years at Andelcare, we have assisted numerous people with PD. As Michael J. Fox noted, it is a disorder that affects everyone differently. But overall Parkinson’s is described as:

a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, chiefly affecting middle-aged and elderly people. It is associated with degeneration of the basal ganglia of the brain and a deficiency of the neurotransmitter dopamine.

Who is affected by Parkinson’s?

According to the Parkinson’s Disease Foundation, an estimated seven to 10 million people worldwide live with Parkinson’s disease. In the United States, as many as one million individuals live with PD, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.

Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year, and this number does not reflect the thousands of cases that go undetected. Incidence of Parkinson’s increases with age, but an estimated four percent of people with PD are diagnosed before the age of 50. Statistics have shown that men are slightly more likely to have Parkinson’s disease than women.

Keynote speaker gives update    

Medical Keynote Speaker Daniel Burdick, MD. Courtesy NW Parkinson's Foundation.

Medical Keynote Speaker Daniel Burdick, MD. Courtesy NW Parkinson’s Foundation.

For the “civilians” at the conference, Medical Keynote Speaker Daniel Burdick, MD, gave as straightforward an update on PD as possible.  A fellowship-trained movement disorders specialist at the Booth Gardner Parkinson’s Care Center at EvergreenHealth, Burdick described highlights of two of the major trends in current, big research programs: dopamine replacement and understanding the causes of PD.

He noted that after 50 years levodopa is still the most effective drug used for PD. It can provide dramatic results but it has problems, including that it is absorbed in only a small part of the intestines, it has a short half-life and it offers a fluctuating response. As a result, said Burdick, research is looking at ways to offer continuous delivery and by by-passing the intestines.

“The latest research has recently brought to market an L-dopa intestinal gel delivered by a pump into the small intestines that is fairly effective at reducing fluctuations,” observed Burdick.

Other studies are investigating the effects of levodopa administered through an inhaler as an add-on treatment to oral treatment. A third research procedure in trials looks at the effects of L-dopa administered through subcutaneous infusion. Another avenue of research is concerned with the efficacy of pluripotent stem cells (stem cells that come from adult skin cells)

Latest research looks at causes

Finally, Burdick summarized the various causes of this condition, which is generally related to a dopamine deficiency.  “Could it be a disease of cellular mitochondria, the part of the cell that converts food to energy?” asked Burdick. “Or could it be an inflammation or related to cell housekeeping as when lysosome digest bad cells or a disease related to a rogue protein such as Lewy bodies – everyone with PD has Lewy bodies.”

As Burdick wrapped up his medical update, he offered that the goal of understanding PD is to develop bio-markers that could help diagnose the disease with a lab test and to develop tools such as a vaccination. “We need everyone to get involved in research, which will lead to more effective treatment earlier, slow the progress and even make predicting who will get it possible so we can tailor treatment.”

Workshop on “Right to Risk”

Conference goers in the photo booth. Courtesy NW Parkinson's Foundation.

Conference goers in the photo booth. Courtesy NW Parkinson’s Foundation.

One of the highlights of the well-organized conference was the presentation by Seattle therapist and speaker Jane Tornatore, PhD, called “The Right to Risk.” An engaging speaker, Dr. Tornatore challenged attendees to evaluate where they stand on the “Safety vs. Freedom” continuum for their care partner. Her position underscored the fact that when humans feel they have the ability to make choices they experience more freedom and, thus, more control over their lives.

She suggested we consider our Circle of Influence, what we have control over – our thoughts and actions and our Circle of concern, which is everything else. Tornatore recommends that when we have no control over our problems, we need to genuinely accept and learn to live with them; otherwise the problems have control over us.

Tornatore’s Tools for dealing with accepting problems:

  • Be a master experimenter, “I’m just going to keep trying’
  • Ask “What can I do right now?” “What is the next step?”
  • When really overwhelmed—what is the tiniest step I can take in this moment?
  • When you take a step, no matter how big, CELEBRATE!
  • When in a Circle of Concern ask, “Is there something I am willing to do? Write a check, write a letter, take action, volunteer, offer to help?”
  • Ask, “How long have I tried to change this? Has it worked yet?”

Dr. Tornatore also suggested we respect the person with Parkinson’s boundaries, “Know your boundaries and let the person with PD have theirs.”

For more information:

To find out about clinical trials and how to participate, please visit www.PDtrials.org, a website created by the PDtrials coalition to provide a listing of Parkinson’s clinical trials that are open for enrollment. To learn more about clinical research advocacy, visit www.pdf.org/en/clinical_trial_inv.

Tags: Parkinson’s disease, Parkinson’s Foundation, Parkinson’s clinical trials, latest research on Parkinson’s, levodopa