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PSCKY
Call us!502.426.0888
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Dear Friends:
Thanks to everyone who took our "Who Is Your Neurologist?" survey. The information you shared has already helped guide our thinking in how PSCKY can work more closely with local doctors.
Some facts that may interest you from the survey:
- 98% of respondents see a neurologist to treat PD,
- however, for 74% of respondents, the person who currently treats your PD is NOT the same person who originally diagnosed you. Why?
- Some the main reasons you were not still receiving treatment from the same person who diagnosed you included: you didn't feel listened to, you didn't like the office staff or the doctor, you or your doctor moved. The #1 reason for switching doctors was: you wanted to see someone with a good reputation dealing specifically with movement disorders.
- Respondents currently see many different doctors, both in our community and out of town, for primary PD care.
- The majority of respondents see their current PD doctor between two and four times a year.
- Overall, respondents were generally pleased with their present PD neurology care. However,
- the most dissatisfaction with your current PD care came in the areas of length of wait time to get an appointment, the doctor or staff not being available for follow-up questions, and dissatisfaction with the courtesy and helpfulness of your doctors' staff.
Answers are still coming in, so if you haven't taken the survey, please do!
We were saddened to hear the news of Fletcher Elmore's passing in October of this past year, as well as the death of Dan E. O'Brien. Our thoughts are with both families.
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NEW GROUP IN HENRY COUNTY, KENTUCKY
A new support group is forming in Henry County! The Henry County Local ran a lovely article on host (and person with Parkinson's disease) Joy Hay last week, which we know you'll enjoy. T he first meeting of the Henry County support group will be from 1-2:30pm on Friday, February 19th at the Henry County Fairgrounds. If
you have a family member or friend with Parkinson's disease who lives within a
15-20 minute drive to Turners Station, please let them know there is a
support group starting in their area. Those interested in attending are asked to phone Joy Hay at 502-396-4826, preferably between 3-6pm, or Katherine Autin at 502-426-0888 or 502-314-8307. |
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OTHER NEW GROUPS, AND NEW AFFILIATES
We know you've noticed that lots of new groups are forming! Here's a recap of some of the new groups this year (and existing groups who have affiliated with PSCKY in the past weeks). Remember, you can see all of our support groups on our website! We're also giving you a "sneak preview" of some other groups that are in the works! Neighborhood-based support group hosts attend a PSCKY training.
DISCUSSION AND EDUCATION SUPPORT GROUPS:- Our Mother of Sorrow's Group (new affiliate): Next meeting on February 16th.
- Elizabethtown Group (new affiliate): Next meeting on February 18th.
- Henry County (KY) Group: First meeting on February 19th.
- Young Men with Parkinson's Group: First meeting coming soon!
- Nazareth Home Parkinson's Group: First meeting in March 2010.
EXERCISE & MOVEMENT SUPPORT GROUPS:- Thursday "Moving On" Group: an expansion of our popular "Moving On" program in Shelbyville, KY. Group now meets in two different locations on Mondays and Thursdays.
- Thursday morning "Move It or Lose It" Group: a new movement program in partnership with Norton Aububon Hospital's Rehab Department. First meeting this Thursday, February 4th!
- Thursday afternoon "Let's Dance!" Group: a new movement program in partnership with Bellarmine University's Physical Therapy Department. First meeting this Thursday, February 4th!
COMING SOON!- LSVT BIG Support Group: scheduled to start in March 2010 in partnership with Frazier Rehab, this weekly support group will be for those having completed at least 8 sessions of LSVT BIG therapy. The group will meet weekly to practice LSVT BIG exercises together.
- Music and Wellness Group: scheduled to start in April 2010 in partnership with the Robert Lerman Memorial Music Library and Music Therapy Department at Norton Audubon Hospital. This weekly music and wellness group will provide group music therapy to people with Parkinson's disease from April-September 2010.
- Art and Discussion Group: working in partnership with Tom Boykin (artist and person with Parkinson's disease), this group will learn a beautiful form of collage artwork together under Tom's guidance. Anticipated start date: Spring 2010.
- Walking and Hiking Group: working in partnership with Jay Miller (hiker and person with Parkinson's disease), this group will plan walks of varying difficulty (from easy to moderate) at various beautiful locations. May be the perfect place to try out those walking poles that seem to help so much with moving *both* sides of your body! Anticipated start date: Spring 2010.
- Support Group for Care Partners & Family Members of People with Parkinson's Disease with Dementia: Any care partners or family members who are interested in this support group should call Katherine Autin at 502-426-0888, 502-314-8307 or send Katherine an e-mail.
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RESPITE CARE
Respite care is short term care that helps a family take a break from the daily routine and stress. It can be provided in the client's home or in a variety of out of home settings.Respite care is an essential part of the overall support that families may need to keep their loved one with a disability or chronic illness at home. Since not all families have the same needs, respite care should always be geared to individual family needs by identifying the type of respite needed and matching the need to the services currently available, or using this information to develop services where none exist. Once identified, it is also important for families to have ready access to that type of respite, in an affordable form. The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs. |
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CALL FOR VIDEO ENTRIES: NEURO FILM FESTIVAL
 One in six Americans is affected by a brain disorder such as Alzheimer's disease, migraine, autism, MS, Parkinson's disease and more. Make a short film telling your story, or the story of a loved one, affected by a brain disorder. Help the American Academy of Neurology make the case for why more brain research is needed to find cures. Not only do you have the chance to win up to $1,500 in prizes, you can help spread awareness of Parkinson's disease and make a difference. You do NOT need to be a professional filmmaker to enter; you just need to share a compelling story about someone with a brain disorder. |
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NEW IN OUR LENDING LIBRARY
 The publisher recently sent us a free copy of Missy Buchanan's newest book " Talking with God in Old Age: Meditations & Psalms." The author "sensitively addresses the worries, fears and frustrations of older adults and extends hope, encouraging them to maintain an open dialogue with God." As with all books in our lending library, you're welcome to stop by and borrow it, or we're happy to mail it to your home. Check out our online list of lending library books! |
IN OUR COMMUNITY
The Legal Aid Society is offering free legal clinic on foreclosure, divorce, bankruptcy and more during January & February. For more info & dates, call 502-584-1254 or visit their website! Stages of Senior Care: You're invited on Wednesday, February 3rd from 5-7pm to the University of Louisville's Shelby Campus to hear Paul Hogan discuss his latest book, "Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions." Paul is the Home Instead Senior Care Co-Founder & CEO. RSVP to 502-515-9515 or online here. The first 100 guests will receive a complimentary copy of the book. Hors d'oeurves and refreshments will be provided. Ample, FREE parking.Parenting the Parent: Navigating Medicare & Medicaid Coverage will be discussed on Tuesday, February 9th from 6-8pm at the Marshall Women's Health & Education Center at Norton Suburban Medical Plaza III, Ste 108. Becky Beanblossom, owner of Home Instead Senior Care, will address senior care issues and the role Medicare and Medicaid may play in decision making. Call 502-629-1234 to register for this free event! 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. | |
DON'T FORGET!
MONDAY, FEBRUARY 1st
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 2nd
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.
2pm: Brownsboro Road Support Group (Thomas Jefferson Unitarian Church, farmhouse at end of driveway; 4936 Brownsboro Rd 40222). For more information, e-mail support@pscky.org or call 426-0888. The speaker will be Mark Clark from At Home Rehab, discussing falls prevention.
6pm: J-town/Hurstbourne Support Group (Home Instead Senior Care meeting room; 4610 Taylorsville Rd). For more information, e-mail support@pscky.org or call 426-0888. The group will be discussing the importance of good nutrition in Parkinson's disease.
7pm: Floyd Memorial Support Group (Floyd Memorial Hospital, New Albany IN in the Parish Health Education Center). For more information, call Mel Brown at 812-989-6542.
THURSDAY, FEBRUARY 4th
FIRST MEETING! 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. Jinn will be attending to welcome you to this program.
FIRST MEETING! 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. Class is full. Katherine will be attending to welcome you to this program.
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 5th
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
Jinn at Jinn@pscky.org. Thanks!
1pm: Jinn meeting with staff of Norton Audubon's Music Therapy Department to discuss the launch of a new music and relaxation group.
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All the best,
Jinn Fuller Renfro, Executive Director Katherine Autin, Director of Support Services
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