center happenings - live your best with parkinson's...
TRANSCRIPT
Parkinson Support Center 315 Townepark Circle, #100, Louisville, KY 40243 www.parkinsoncenter.org
New Young Onset Support Group (For men and women, ages 60 and under. Please call if you have additional questions.)
WHEN: First Thursday of each month at 6:30 pm WHERE: Emily Room at Gilda's Club, 633 Baxter Ave, Louisville, KY 40204 For more information, please contact the Parkinson Support Center at 502.254. 3388 or [email protected]
New South Louisville Support Group WHEN: Second Saturday, 9:30 am WHERE: St. Lawrence Church, 1925 Lewiston Dr, Shively, KY 40216 FACILITATOR: Helen Minor For more information, please contact the Parkinson Support Center at 502.254.3388 or [email protected]
Super-Star Chefs will create our feast!
9th Annual Denim & Diamonds Gala Friday, June 3, 2016
Locust Grove
Main course designed by Anoosh Shariat & Dean Corbett
Lead team:
Anoosh Shariat (Anoosh Bistro) Dean Corbett (Corbett’s) Jason Smith (GM, Gordon Biersch) Ellen McCarty (Science Hill) Daniel Stage (Louisville Country Club)
Assisted by:
Matt Weirich (Exchange) Tommy Hayden (Gordon Biersch) Ray Rameriez (Catch 23) Patrick Roney (OakRoom)
Join us for our monthly D&D meetings—6:00 pm at the Center:
Wed., November. 11, 2015 Wed., December 9, 2015
Wed., January 13, 2016 Wed., February 10, 2016...
Please contact Kelli C. Torpey with any interest at 502.254.3388 or email: [email protected]
What’s going on, what’s coming up and when it is going to happen! November 2015
In this month’s edition:
Symposium Review and PD Calendar—pg.1
Young Onset Parkinson’s Disease and Events—pg. 2
A New Attack on Parkinson’s & PD Stories—pg. 3
Updates on support groups, Denim & Diamonds– pg. 4
10th Annual Symposium
Over 200 people registered for the Center’s 10th Annual Frances E. Lang Living Well with Parkinson’s Symposium on Monday, October 12 at the Jeffersontown Community Center. Attendees visited 30 Exhibitors, interacted with other people with
Parkinson’s disease and their caregivers, and learned latest news in emerging therapies and treatments for Parkinson’s from the panel of local experts in the field of movement disorders.
Keynote Speaker, David Zid, BA, ACE, APG and his associate, Jackie Russell, RN, BSN, CNOR, from Ohio Health’s Delay the Disease Fitness Program, inspired attendees of all ages to stand up and exercise to his lead, which he emphasized helps increase blood flow and neuropathways to the brain. His video of a woman before and after months of participating in the Delay the Disease exercise program was equally inspiring.
Gene Pelfrey, a regular attendee of the Center’s exercise classes, concurred. “David Zid was terrific. He made a powerful point about how valuable physical exercise is if you have Parkinson’s,” he said. “I thought I was at a Tony Robbins Inspirational meeting!” Mr. Pelfrey still practices some of the recommended routines, such as the “John Wayne Walk” while getting his mail each day.
David Zid’s presentation was also very powerful for Margee Rulketter. She
had been “hiding out” with her Parkinson’s disease since she was diagnosed
10 years ago. “It has been life-changing for me (since Symposium),” she
said. She purchased David’s books and CD’s from their website and she
follows his exercises daily. “It was such a gift! It was important to learn not to
exercise when meds aren’t on. My body is changing!”
Ann Pifer, care tender to her husband Doug, enjoyed this year’s Symposium. “The variety of presentations is really helpful. Each year we learn something new”, she said. “It's for all stages of diagnosis-- newly diagnosed as well as those who have lived with Parkinson’s disease for awhile. Thank you keep up the good work! Your support means a lot!!“
Want to help plan our 2016 Symposium? Call the Parkinson Support Center at 502.254.3388 or email [email protected].
CENTER HAPPENINGS
facebook.com/parkinsoncenter
Twitter.com/parkinsoncenter
https://www.youtube.com/
www.parkinsoncenter.org
New 2016 Calendar Features
Local Parkinson’s Artists
ARTIST: Ken Tripp
This calendar is a collection of artwork from various artists with Parkinson’s disease in our local community (Kentucky and Southern Indiana).
We created this calendar to showcase the creativity and talent that is exhibited by those living with Parkinson’s.
Participating artists:
(January) Machele Bess (February) Anne Howard (March) Gordon Trabue (April) Bob Wenzel (May) Ron Czerwonka (June) Mary Killian (July) Bob Schack (August) Carol Stough (September) Don Kellams (October) Ken Tripp (November) John David Autin (December) Christopher Miller
A perfect Christmas gift for the holidays! $15.00 each while
quantities last.
Call 502.254.3388 to purchase
your calendar!
Parkinson Support Center 315 E. Townepark Cir., #100, Louisville, KY 40243 502.254.3388
UPCOMING EVENTS
Medication Management with Chris Harlow
When: Thursday, November 5, 2015 at 4:00 pm; Where: The Parkinson Support Center; Cost: FREE and open to those with Parkinson’s disease and their families. To register, email [email protected] or call 502.254.3388.
Parkinson Caregiver ‘s Appreciation Luncheon
WHEN: Tuesday, November 10, 2015 from 12:00 pm-1:30 pm; WHERE: Southern Indiana Rehab Hospital, 3104 Blackiston Blvd, New Albany, IN 47150; WHAT: Come meet other caregiver's, learn about resources available in the community and enjoy a complimentary lunch! Registration is required. Please contact [email protected] or 502.254.3388. Lunch is sponsored by Southern Indiana Rehab Hospital.
Dr. Angela Hardwick—Dine and Learn
Living Well with PD: Understanding Parkinson's Disease and Current
Treatments
WHEN: Wednesday, November 11, 2015 at 6:00 pm; WHERE: Claudia Sanders Dinner House, 3202 Shelbyville Rd., Shelbyville, KY 40065 WHAT: Come hear from Dr. Angela Hardwick, Norton Neuroscience Movement Disorder Specialist. Event is free. Registration is required. Please contact [email protected] or 502.254.3388. Dinner is sponsored by Teva Neuroscience.
Parkinson Caregiver ‘s Appreciation Luncheon
WHEN: Thursday, November 12, 2015 from 11:00 am to 12:30 pm. WHERE: The Episcopal Church Home, 7504 Westport Road, Louisville, KY 40222 WHAT: Come meet other caregiver’s, learn about resources available in the com-munity and enjoy a complimentary lunch! Registration is required. Call 502.254.3388 or [email protected]. Lunch is sponsored by Episcopal Church Home.
Young Onset Parkinson’s Disease
According to the American Parkinson’s Disease Association (APDA) some-one has Young Onset Parkinson’s Disease (YOPD) when they are diagnosed between the ages of 21 - 40, but the age ranges may vary based on the source. The National Parkinson Foundation cites that anyone who was diagnosed with Parkinson’s Disease prior to age 50, has YOPD.
What characterizes YOPD? People diagnosed at a younger age experience the disease differently, according to the National Parkinson Foundation. Their lives can be busier with family and work obligations and they may have less time to engage in the multitude of lifestyle changes required to deal with the disease. There may be social reactions as well. If someone develops Parkinson's under age 50, peers are more likely to be healthy and may struggle to deal with the disease more than an older group. Also, younger people are different medically. The younger the person with Parkinson’s, the more likely it is that their disease is genetic or caused by exposure to a specific toxin, per the National Parkinson Foundation. Younger people have younger brains, so they can be more responsive to exercise and other treatments.
What are the Common Symptoms of YOPD? According to the American Parkinson’s Disease Association (APDA), common symptoms include:
Tremor (when limb is at rest) Bradykinesia (slowness) Rigidity (stiffness) Postural instability (balance problems)
Someone with YOPD may exhibit one or more of the symptoms of Parkinson’s to be diagnosed, not necessarily all of them.
Although there are many challenges with YOPD, the Center offers help. A monthly Young Onset Support Group was recently formed, which meets at Gilda’s Club in Louisville. Men and women are welcome, as well as anyone below the age 60. See page 4 for more details.
2016 Kentucky Derby Festival Marathon/
miniMarathon- Run for Parkinson's Disease
WHAT? The Parkinson Support Center has been chosen to be one of 32 participating non-profit organizations in Louisville for the 2016 KDF Marathon and miniMarathon! WHEN? 2016 Kentucky Derby Half Marathon or Full Marathon Saturday, April 30, 2016
WHY are we participating? Exercise is an important part of healthy living for everyone. However, for people with PD exercise is not only healthy, but a vital component to main-taining balance, mobility and daily living activities (excerpt from pdf.org). Family, Friends and coworkers can form fundraising teams and walk/run the KDF Marathon/mini-Marathon (individually or as a relay) in support of the Parkinson Support Center. All proceeds go directly to the Parkinson Support Center.
PD Stories
The Three Dolls
Shared by Donna Mattox
A sage presented a prince with a set of three small dolls. The prince was not amused. “Am I a girl that you give me dolls?” he asked. “This is a gift for a future king,” said the sage.
“If you look carefully, you will see a hole in the ear of each doll.” The sage handed him a piece of string. “Pass it through each doll.”
Intrigued, the prince picked up the first doll and put the string into the ear. It came out from the other ear. “This is one type of person,” said the sage, “whatever you tell him comes out from the other ear. He doesn’t retain anything.”
The prince put the string into the second doll. It came out from the mouth. “This is the second type of person,” said the sage. “Whatever you tell him, he tells everybody else.”
The prince picked up the third doll and repeated the process. The string did not come out. “This is the third type of person,” said the sage, “whatever you tell him is locked up within him. It never comes out.”
“What is the best type of person?” asked the prince. The sage handed him a fourth doll. When the prince put the string into the doll, it came out from the other ear. “Do it again,” said the sage. The prince repeated the process. This time, the string came out from the mouth. When he put the string in the third time, it did not come out at all.
“This is the best type of person,” said the sage. “To be trustworthy, a man must know when not to listen, when to remain silent and when to speak out.”
A New Attack on Parkinson’s Disease
Excerpted from The Wall Street Journal (WSJ.com) article of October 3, 2015 by Dr. Jon Palfreman ‘A New Attack on Parkinson’s Disease.”
Dr. Pelfreman, a Parkinson’s patient and researcher, is author of “Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease,” published September 15 by Scientific American/Fraar,, Straus & Giroux.
By Dr. Jon Palfreman
Walking in the east London neighborhood of Shoreditch in the early 1800s, the physician James Parkinson noticed certain individuals who moved differently from the crowd. In 1817, he articulated their symptoms, such as tremor, rigidity, slow movements and stooped gait. His “Essay on the Shaking Palsy” became the first description of what is now called Parkinson’s disease.
Some 200 years later, the disease, which affects one million Americans and seven million people world-wide, still has not been cured. While drugs and surgeries can help manage the symptoms, attempts to slow, stop or reverse the disease’s course have failed. Yet recent developments have given patients hope that we may be on the verge of a breakthrough that could stop the disease as James Parkinson once predicted.
Many researchers think that the bad actor in Parkinson’s Disease is a simple protein, called alpha-synuclein, gone rogue. The misfolded molecule forms sticky clumps called amyloids that jump from neuron to neuron-killing cells. They in particular snuff out the nerve cells that make a brain chemical, the neurotransmitter dopamine.
If alpha-synuclein is the protagonist in this story, then, reducing its levels in the brain should help control the disease. A number of alpha-synuclein-busting agents are due to begin clinical trials in the next year or two. One product is based on a simple virus called M13. If given early enough, such agents might prevent development of the classic and disabling symptoms of Parkinson’s disease from ever materializing. And for patients who already have the disease, such interventions might stop the disease in its tracks, enabling such patients to maintain their current level of health and avoid developing cognitive impairment and dementia.
Having studied the past 200 years of Parkinson’s research, I am fully aware that this strategy may not succeed. But from each setback comes knowledge that leads to new hypotheses. Sooner or later, we will vanquish this precious malady.
Supporting our organization has never been easier!Just shop at Kroger and scan your Plus Card. How to enroll: 1. Visit www.kroger.com/communityrewards
2. Click "Enroll Now" 3. Sign in to your online account, or create an account 4. Search "Parkinson Support Center" 5. Select "Parkinson Support Ctr-KYkiana" (our number is 34990)