PSCKY logo smallParkinson Support Center of Kentuckiana Newsletter
February 15-21
The mission of the Parkinson Support Center of Kentuckiana is to provide support services that improve the quality of life for the Parkinson's community, to promote public awareness; to contribute to the local and national efforts to raise funds for support, and to accelerate the research for a cure.
PSCKY
 
Executive Director: Jinn Fuller Renfro (jinn@pscky.org)
 
Director of Support Services: Katherine Autin (support@pscky.org)

Director of Outreach & Training: Adina Cook (training@pscky.org)
 
Call us!502.426.0888
 
Join Our Mailing List
Dear Friends:

Thanks to everyone who took our "Who Is Your Neurologist?" survey over the past weeks. On February 1st, we shared some preliminary results. With 61 surveys now complete, we wanted to update you on some of the findings:

98% of respondents see a neurologist to treat PD, however, for 75% of you, the person who currently treats your PD is NOT the same person who diagnosed you. The top reasons you gave for seeing someone else include:
  1. The doctor who diagnosed you referred you to someone else (20.5%)
  2. You felt the doctor who diagnosed you didn't listen to you or address your concerns (18%)
  3. You moved or your doctor moved (15%)
  4. You specifically wanted to see a Movement Disorders Specialist or specialist in PD (12%)
  5. You didn't like the doctor who diagnosed you or your doctor didn't return calls promptly (12%)
  6. You didn't like the office staff or the way appointments were handled/how frequently appointments were scheduled (9%)
  7. You heard good things about a different doctor than the one who diagnosed you (7%)
  8. You traveled out of town to the doctor who initially diagnosed you (4%)
Overall, most people who took our survey are pleased with their current neurology care. However, you'd like to see improvement in:
  1. How long it takes to get an appointment
  2. The ease in making an appointment
  3. The courtesy and helpfulness of doctor's staff
  4. Access to doctor or staff for follow-up questions
Based on your survey results, PSCKY is taking these steps to try to help meet your needs:
  1. We are forming a Professional Advisory Board and inviting neurologists and neurosurgeons to serve on this board. We hope this will help us work more closely with local doctors and find new ways for us to improve our support programs and workshops.
  2. We will schedule teleconference support groups where area doctors will speak about specific topics as well as answer your questions.
  3. We will start an "Ask the Doctor" column in our e-news, printed patient newsletter, and on our website so that you can submit your questions and we can all benefit from the answers.
  4. We will design and schedule educational workshop so that you can learn about preparing for and getting the most from your neurology visits and how to be a strong advocate for your own care.
  5. We will reach out to all area neurologists and general practitioners this year and next so that people newly diagnosed with PD find PSCKY--and our services--as soon as possible after diagnosis.
Again, we appreciate your feedback. We will be conducting other surveys throughout the year to better understand the issues you are facing.

Finally, our thoughts are with Ed Yeater and his family, after the passing of his wife Claire. Ed is one of the hosts of our South Louisville Support Group.
REMINDER: WEATHER CLOSING POLICY FOR PSCKY
A brief reminder about our weather closing policy for our office, workshops and support groups. We follow the school-closing policy; if schools are closed in the county where the event takes place, the event is canceled.

EXCEPTIONS: If Jefferson County schools are open but delayed, "Move It or Lose It" at Norton Audubon will be held as regularly scheduled at 9 am. "Let's Dance", however, will be canceled if JCPS is on delay and is also canceled if there is significant snow on the ground, due to problems clearing the parking lot at the "Let's Dance" site.

You may always call Jinn at 502-640-7141 (cell) or Katherine at 502-314-8307 if you need an update as to whether any PSCKY event is "on" or "off."
NEW GROUP FOR CARE PARTNERS: PD plus DEMENTIA
Support Group for Care Partners of People with Parkinson's Disease with Dementia* (new group forming now!): Any care partner or family member of someone with PD and dementia is welcome to join this group. The first support group meeting of care partners whose loved ones have Parkinson's disease with dementia will meet at KT's Restaurant & Bar (off of I-64 at the Grinstead Avenue exit) on Monday, March 1, 2010 from 5:30-7 p.m.  The host for this group is Mary Kay Flege.  Her cell phone number is .  The group will decide at this first meeting how often the group will meet, where it wants to meet, and what will be discussed.  Anyone interested in this group, can contact Mary Kay Flege at 502-664-8560 or Katherine Autin at 502-426-0888 or 502-314-8307.
NEED HOME REPAIR? DON'T MISS THIS!
Live in Louisville or Southern Indiana? Own your own home? Check this out! New Directions Housing Corporation is taking applications for Repair Affair 2010. Volunteers complete home repairs including wheelchair ramps, handrails/grab-bars, flooring, steps, locks, door & window repair, exterior & interior painting, yard-work, clean-up and more. Applicants must own and live in a single-family home, be at least 60 years of age or certified as disabled, and qualify as low-income. Applications are taken by phone, in-person or by fax from January through March. Call 502-719-7143 or 812-949-8238 x143 for more info.
ARE YOU A CARE PARTNER? NEED A LITTLE PAMPERING?
Tea CupSt. Matthews United Methodist Church offers afternoon Teas for family care partners and is looking for people to invite! The Teas provide an informal, relaxed time of respite as well as a time to share experiences and receive support from other care partners. The next Tea is planned for Sunday, April 18th from 2-4pm. Seating is limited, so please call soon for more information or a free invitation for you and a friend: Kathy Nugent at 502-479-7412 or Eileen James at 502-671-7767. You may also call to suggest a care partner who could use an invitation!
PD EXPERT BRIEFING: NUTRITION & PD, FEBRUARY 23rd
Join the Parkinson's Disease Foundation--by phone or computer--for the fourth event in a six-part educational series of PD ExpertBriefings. This one-hour event, led by Dr. Christine Tangney, will provide tips on nutrition and Parkinson's disease. During the last 20 minutes of the event, participants can ask Dr. Tangney their own questions on the topic. Event is Tuesday, February 23 at 1pm. Click here to register!
WORLD'S HIGHEST PREVALENCE OF PD
The world's highest prevalence of Parkinson's disease by far has been found among the Amish community, where Parkinson's disease is two to three times more prevalent than   anywhere else in the world.  The Amish live primarily in the North East United States.  The prevalence of Parkinson's disease among the Amish community is 970 per 100,000, which is enormously high. Their community is afflicted by genetic disorders, so it was thought that the cause might be genetic. However, researchers found that the more closely related family members were, the less they were affected.  The Amish are almost exclusively agrarian and most of the community uses pesticides.  Researchers did not assess the effect of pesticides.

The world's highest prevalence of Parkinson's disease of any region is in Nebraska, with 329.3 people per 100,000. It is possible that there is a very high prevalence of Parkinson's disease in Nebraska due to the heavy use of insecticides in what is largely a farming area. The United States is the country as a whole with the world's highest prevalence of Parkinson's disease. It's older life expectancy is thought to be the reason why the United States has a larger number of people with Parkinson's disease.  It is also easier to be diagnosed with a medical disorder in the U.S.

This information was taken from the Viartis website.Visit for more interesting facts about Parkinson's disease!

ON THE WORLD WIDE WEB
FacebookPSCKY is now on Facebook! Please "become a fan." Thanks to everyone who's joined up so far! We now have over 130 "fans"...and we welcome your pictures, posts and conversations on our Facebook site.

We deeply enjoyed this article on "Apathy to Optimism--My Parkinson's Pendulum." There's a lot of food for thought in this reflective essay by a person with Parkinson's disease on the role of hope.
IN OUR COMMUNITY
A weekly nondenominational Group Meditation & Spiritual Awareness Class is open to all, whether experienced or just beginning meditation. The class is held every Tuesday from 6:30-8:45pm in the second floor Community Room of the Center for Integrative Health (105 N Lyndon Ln). Suggested donation is $10/class. For additional info, email KLRIEHM@aol.com.

Come listen, ask questions and learn about dementia at Nazareth Home (2000 Newburg Rd). On Tuesday, February 16th from 5:30-6:30pm, Dr. Jane Cornett will speak on "Palliative Care & Dementia Patients." Please RSVP to Gretchen at 502-473-2396.

The Nazareth Retreat Center is providing an opportunity to consider areas in our lives that are inviting us to a simpler way of living. To find out more about this retreat, Lenten Weekend--The Call to Simplicity, being held February 19-21, call 502-348-1597.

Come hear Dr. Neil Schulman (the original "Doc Hollywood") give a humor-full and informative presentation--"Laughing All the Way: The Truths About Aging"--on Thursday, February 25th at 1pm at Jewish Family & Career Services (2821 Klempner Way (corner of Dutchmans & Cannon Lns)). Free! For more info, call 502-452-6341.

Attend the 2010 Louisville Emergency Preparedness Fair on February 27th from 12-4pm at the Old Male High School. Don't be a victim when Mother Nature makes another visit to our area. Electrical outages, food shortages, family and pet emergencies, storm-related damage....these can hit at any time. Learn what you can do to prepare and protect yourself!
dontforget
DON'T FORGET!
MONDAY, FEBRUARY 15th

6:30pm: Shelbyville "Moving On" Exercise Group (Jewish Hospital Shelbyville Community Room (rear of hospital); Hospital Drive off Hwy 60). There is no cost for this group. For more information: call Dyna at 502.377.7562 or e-mail her at dynazehn@myway.com.

TUESDAY, FEBRUARY 16th

Noon: Louisville Chair Yoga Group (Yoga at Crescent Hill; 201 S Peterson Avenue, 40206; lower level). To register: email support@pscky.org or call 502.426.0888. FREE IN FEBRUARY! All people with Parkinson's and their partners are welcome.

Noon: Deadline for March's issue of our mailed newsletter. If you have a question, article or musing you'd like to share, it's more than welcome! Please email to info@pscky.org. Thanks!

1:30pm: Our Mother of Sorrows Support Group(Our Mother of Sorrows School Cafeteria; 770 Eastern Parkway). For more information, please contact Frank Eimer at 502-458-6742 or drop Father Frank an e-mail.

6:30pm: Shelbyville Support Group (Jewish Hospital Shelbyville Community Room (rear of hospital); Hospital Drive off Hwy 60). An open support group for people with Parkinson's, friends and family members. No RSVP needed. February's topic: Assessing home safety for people with Parkinson's disease. For more information, call Katherine at 502-426-0888 or 502-314-8307.

WEDNESDAY, FEBRUARY 17th

11am-5pm: Parkinson Action Network Online Conference (Parkinson's Action Network 16th Annual Research & Public Policy Forum). Available online across the country. Learn about current legislative issues impacting the Parkinson's community, and how you can advocate for better treatments and a cure by communicating with elected officials. Jinn Fuller Renfro will be attending on behalf of PSCKY.

1pm: Bardstown Support Group (Nelson County Public Library, Community Room). For more information, please call Jane at 502-350-4458 or e-mail osljane@aol.com. In February: open discussion.

4:30pm: Scott County Indiana Support Group: (Scott Memorial Hospital, Conference Rm A; 1471 N Gardner Ave.) For more information, call 812-416-1054.

6pm: South Louisville Support Group*: (Sts. Mary & Elizabeth Hospital in the Board Room.) For more information, e-mail support@pscky.org or call 502-426-0888. In February, the group will discuss movement and exercise for people with Parkinson's disease.

THURSDAY, FEBRUARY 18th

9am: "MOVE IT OR LOSE IT!" Exercise Group (Norton Audubon Hospital, Joint Care Gym, 6th floor). Weekly mobility and movement (dance, yoga & Pilates) group led by certified instructor Amy Robinson and medically supervised by Zorre' Kimura. To register, email support@pscky.org or call 426-0888. You may join in at any time, but pre-registration is requested. There is no cost & special parking has been arranged. Katherine Autin will be attending to observe the group today.

11:30am: "LET'S DANCE!" Exercise Group (Dance Louisville; 8023 Catherine Ln, 40242). Weekly dance therapy support group led by students of Bellarmine's Physical Therapy department. Due to cancellations, we may have space available for a few more folks. Call Katherine at 502-426-0888 or 502-314-8307 if interested. Jinn Fuller Renfro will be attending to observe the group today.

3pm: Elizabethtown Support Group (HealthSouth Lakeview Rehab Hospital in the therapy gym). For more information, email tina.desjourdy@healthsouth.com or call Tina at 270-769-3100 x365.

6:30pm: Shelbyville "Moving On" Exercise Group (Family Activities Center at Clear Creek Parks (717 Burks Branch Rd)). There is no cost for this group. For more information: call Dyna at 502.377.7562 or e-mail her at dynazehn@myway.com

FRIDAY, FEBRUARY 19th

Noon: Deadline for next week's e-newsletter. If you have a question, article or musing you'd like to share, it's more than welcome! Please email to info@pscky.org. Thanks!

POSTPONED: Henry County (Kentucky) Support Group*: First meeting scheduled for today from 1-2:30 at the Henry County Fairgrounds Building has been POSTPONED. If you live in Henry County, as are interested in a support group, please call Joy Hay at 502-396-4826, preferably between 3-6p.m. or call Katherine Autin at 502-314-8307.

All the best,
 

Katherine Autin, Director of Support Services
Adina Cook, Director of Outreach & Training
Jinn Fuller Renfro, Executive Director