PSCKY logo smallParkinson Support Center of Kentuckiana Newsletter
May 17-23
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
 
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Dear Friends:

It's Open House this week at PSCKY, and we want to encourage you to come by our office on Friday, May 21st any time between 10am-2pm. We need help folding, sealing & labeling our monthly newsletters; if you can come by Open House and take some for the weekend and bring them back to use on Monday or Tuesday (May 24 or 25), it would be a great help and we can spread the work around! As we continue to serve more and more people, it becomes more challenging for any one volunteer to assemble all the newsletters in a timely fashion. Please let Jinn know you'd like to help, and she'll have a packet ready for you at Open House. Of course, we'd also just like a chance to visit with you, answer questions, share resources and listen to your ideas. Just come on by! We'll be here!

If you're planning to attend our Denim & Diamonds Celebration (and fundraiser!) on June 4th from 6:30-11pm at Historic Locust Grove, please make your reservations NOW! Remember, if you're a person with Parkinson's disease involved with our groups or activities, we'd like to invite you and a guest to attend at a half-price rate of $100 for each ticket. Just mention "Support Group rate" when you make your reservation by phone (502-426-0888), online, or by returning your invitation card. It's a great time, and we'd really like to see you there!

Once again, GoodSearch is running a three day contest for non-profits; offering $1 to PSCKY for each person who downloads the free toolbar (which gets YOU online savings and raises money for PSCKY when you use the shopping or search features)! It's a little something that you can do that makes a difference! The contest runs from noon on Wednesday, May 19th till noon on Friday, May 21st.

If you didn't get a chance to take our survey in last week's e-news, would you please do so this week? It's about a new fitness group for people with PD who want to radically address their fitness levels.



Wishing you well this week,

Jinn Fuller Renfro

Executive Director
CLINICAL TRIALS NEED YOU--AND YOU MAY NEED TRIALS!
We regularly check the clinical trials to see what's new (and what studies need the help of participants) and we hope you do to! There are many types of trials. Some trials are "interventions", where a therapy or medicine is used that may make a difference in PD symptoms. Other trials are "obversation", where the study does not address PD symptoms, but helps researchers better understand the disease.

We visit PD Trials every other week to see what's new, searching by location and then within 100 miles or so of our zip code. This new intervention study of rasagiline as an add-on to dopamine agonists is taking trial participants. (You may know rasagiline better by its brand name, Azilect.) The study mapping mood in Parkinson's disease for those who've had deep brain stimulation (DBS) is an observational study that looks interesting and may help researchers better understand the neural circuitry involved in mood changes. And the study of Dynacirc CR is testing whether a medication approved for treatment of high blood pressure (but not yet for PD) may be safe, effective and help slow the progression of PD (nearest contact location is in Cincinnati).

We also regularly visit NET-PD. Presently, the NIH is recruiting folks for a large-scale study of the nutritional supplement creatine.

There are some good links to information about your rights as a participant in clinical trials on our website. We also encourage you to mark your calendars now for this month's Lunch & Learn (May 26th at noon at Meadowview Presbyterian Church). Local person with PD Karen deGraaf will be speaking about clinical trials, and will be available to answer your questions!
VOLUNTEERS SOUGHT FOR STATE LONG-TERM CARE OMBUDSMAN PROGRAM
Nursing Home
It only takes a few hours each month to make a major impact in improving the quality of life for nursing home residents. The State Long-Term Care Ombudsman Program (SLTCO) is recruiting volunteers for their Certified Ombudsman and Friendly Visitors programs. Friendly visitors are exactly as they sound--people who go to nursing homes simply to visit with residents. Certified Ombudman volunteers are trained to investigate concerns, regularly visit long-term care facilities, monitor conditions and provide a voice for those unable to speak for themselves. For more information: call 800-372-2991.
PROPOSED KY UTILITY RATE HIKES COULD IMPACT YOU!
Both LG&E and Kentucky Utilities are asking the Public Service Commission for higher utility rates, raising rates for electricity by 12% and natural gas by 9%. Our friends at AARP are concerned that now is not the time for big rate hikes. Too many working families, the disabled and older Kentuckians struggle each month to pay for life's basics--like prescription drugs and food. Learn more about the proposed rate hikes and how you can voice your opinion by visiting AARP's website.
PROTECT YOURSELF FROM FRAUD
New York City has created a free game to help folks learn how to protect themselves from financial fraud. "Fraud and identity theft typically rise in financially difficult times," says Ali Hodin-Baier, executive director of the Aging in New York Fund. You can download "It's My Money!" free by visiting this site.
ON THE WORLD WIDE WEB
FacebookPSCKY is now on Facebook! Please "become a fan" or, in the new terminology, "like" us. Thanks to everyone who's joined up so far!We now have over 320 "fans"...and we welcome your pictures, posts and conversations on our Facebook site.

Michele Hundley sent along this link to the long and slightly terrifying President's Cancer Panel Report on Reducing Environmental Cancer Risk--What We Can Do Now. If you're not up to 240 pages of reading, you can read a good New York Times article on the panel and its findings here.

Just in case you missed it last week (and in light of some of the information above in that Cancer Panel Report!)...We know many of you are interested in reducing the amount of herbicides and pesticides consumed with your food. Here's a comprehensive list of Louisville Farmers' Markets, with hours and other useful info. Remember, talk to the farmer about his or her use of pesticides; it's best to buy organically grown food. It may be a bit more expensive than "big box produce", but the nutritional content is higher, so you really get "more food" for your dollars!

We appreciate our friends at PDPlan4Life adding PSCKY to their Partners Page on their excellent website! Thank you!

The NIA has released an excellent on-line publication on the topic: "Can Alzheimer's Disease Be Prevented?" You can view it here or use this same link to order a printed copy!

A fascinating study recently published in the Journal of Neurophysiology shows that people with PD are best able to learn new tasks when they are not medicated. The researchers concluded that dopamine overdosing in healthy parts of the brain hampers early stages of sequence learning.
IN OUR COMMUNITY
If you or someone you know lost a loved one recently, you may be interested in walking through your grief with others in a similar situation. The workshop is designed for those who have suffered loss more than 4 months ago. This Grief Recovery Workshop Series will be held on Tuesdays from 6:30-8:30pm at Southeast Christian Church in room ED 214 from May 4-June 29, 2010. For more info, call Debbie White at 502-262-1796 or send her an e-mail.

Mayor Abramson is encouraging citizens age 50+ to take part in the Louisville's Fifty and Over Games from May 15-23. This annual event for athletes from Louisville includes 17 events for folks of all skills and abilities.

The next Community Conversation with Mayor Abramson will be at 6:30pm on Monday, May 18th at Newbury Middle School Gym, 4901 Exeter Ave.

All About Stroke: Risk Factors & Current Updates will be held Thursday, May 20th from 6-8pm at Norton Audubon Hospital. This class will include relaxation therapy to lower blood pressure. To register, call 502-639-1234. As there's a link between PD & stroke, we strongly urge you to consider attending this free workshop.

The Alzheimer's Association is offering free workshops to help identify potential safety concerns (cooking, power tools, weapons, smoking, medications) associated with care for a person with dementia at home. The workshop will also discuss driving safely. MedicAlert+Safe Return enrollment will be offered with scholarship available for all workshop participants. A light meal will be served. Please call 1-800-272-3900 to register for either:
  • Thursday, May 20, 2010 at 5:30pm in Shelbyville, KY at the Multi-Purpose Community Action Agency (207 Washington St)
  • Wednesday, May 26, 2010 at 6pm in Louisville, KY at the Alternative Adult Day Health Care Center (147 Wilma Ave)
The Nazareth Retreat Center will offer a silent directed retreat with optional Group Centering Prayer for both men and women from May 24-29. Choose from three to six consecutive days. Call 502-348-1597 or visit them online.

An Alzheimer's Safety Workshop will be held at the Adult Day Center on Wednesday, May 26th at 6pm. This free event will include dinner and educational materials. Please RSVP by May 21st by calling 502-955-1750. The event will be held at 147 Wilma Ave, Louisville KY 40299.

Arden Courts will be presenting "What to Do When Your Loved One Has Lewy Body Dementia" on Wednesday, May 26th. Registration is from 5:30-6pm and the presentation by Dr. Nancy J. Stiles will be from 6-7pm. For more info and to RSVP, please call 502-423-8776. Our own Adina Cook will be there with an information table!

The Mayor's Healthy Hometown Hike & Bike is scheduled for Memorial Day (May 31st) at 10am at Waterfront Park. This is a great event for walkers and bikers, and there is even a wheelchair accessible route! For more information, visit here!

Christ Church United Methodist (4614 Brownsboro Rd) will hold a Senior Expo on Wednesday, June 2nd from 10am-3pm. This free expos will include screenings, information booths and much more. For more info, contact Nancy Trentham at 502-649-7919.
dontforget
DON'T FORGET!

MONDAY, MAY 17th

9am: Music & Wellness Group
(Norton Audubon Hospital; 6th Floor Joint Care Gym). Music & Wellness is a free weekly class that uses music-based activities to accomplish individualized goals in a therapeutic setting led by a certified music therapist. There is no cost for this group, which is open to people with Parkinson's disease. This class still has openings: call 502.426.0888 to register!

9:30-12:30pm: PSCKY Staff Strategic Planning Meeting

6pm: Denim & Diamonds Gala Celebration Chair Committee Meeting.

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, MAY 18th

9:30am: Adina speaking to adult daycare managers for KIPDA about Parkinson's disease.


9:30am: Walking and Hiking Group (Thurman Hutchins Park). Please RSVP at least 24 hours in advance to Jinn at 502-426-0888 or 502-640-7141 for complete directions and further information. Walk is canceled if no one registers or if bad weather threatens. A message will be posted as to the status of the walk by 7:30am the day of the walk.

10am-Noon: Volunteer Ann Oliver helping assemble info packs.

11am: Jinn attending Community Health Charities Member Agency Meeting.

1pm: Our Mother of Sorrows Support Group (770 Eastern Pkwy, OMS School Cafeteria). For more information, please call Father Frank at 502-458-6742.

4pm: Denim & Diamonds Auction Team Meeting

6pm: Shelbyville Support Group (Jewish Hospital Shelbyville Community Room (rear of Hospital); Hospital Drive off hwy 60). An open support group for people with PD, friends and family.

WEDNESDAY, MAY 19th

10am: Adina at Faith Based Coalition meeting.

11am: Jinn meeting with PSCKY Board President.

Noon: Adina presenting info about PD with screenings at the William Weathers Community Center.

1pm: Bardstown Support Group (Nelson County Public Library). An open support group for people with PD, friends and family. For more information, please call Jane at 502-350-4458. Note: This is the last meeting for this group before their summer hiatus. The group will resume meeting in September.

4:30pm: Scott County Indiana Support Group (Scott Memorial Hospital, Conference Room A). A support group for people with PD, friends and family members. For more information, call 812-416-1054.

5:30pm: Young Movers & Shakers Group (men only!). This group is for young men with PD. No women allowed. For more info or to RSVP, please call Christopher at 502-415-4747.

6pm: South Louisville Support Group (Sts. Mary & Elizabeth Hospital; Kyle Pratt Room). An open support group for people with PD, friends and family members. This month, LSVT LOUD therapist and speech language pathologist Rebecca McGuire will talk about the benefits of LSVT LOUD voice therapy. For more info, contact Ed Yeater at 502-747-4576.
 
7pm: "Even Bigger!" LSVT Big Practice Grou
p(Masonic Homes of Louisville). This group meets weekly under the direction of trained LSVT Big therapists from Frazier Rehab to practice BIG exercises as a community. Participants must have completed at least 8 sessions of LSVT Big therapy and pre-register. Our special thanks to Masonic Homes of Louisville for offering space for this group! Today's leaders: Krista Wibbels, Patty Tompkins. This group is now full, but we are taking a wait-list for a second group. Please call 502-426-0888 if interested.

THURSDAY, MAY 20th
Adina out of office today.

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.

11:30am: Jinn attending Health Service Professionals Network 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. This group is full but we are now registering for a NEW dance group. Please call Katherine at 426-0888 for more information.


2pm: Volunteer Stephanie Riggle helping assemble info packs.

3pm: Elizabethtown Support Group
(HealthSouth Lakeview Rehab Hospital). An open support group for people with PD, family and friends. Joellen Salisbury, voice therapist, will speak about LSVT LOUD voice therapy for people with PD. For more info, call Kim at 270-769-3100 x305.

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, MAY 21st

10am-2pm: PSCKY's Monthly Open House! Please stop by to talk, check out books and share information and ideas!

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!

1pm: Adina at free clinic with Dr. Litvan at the Catholic Enrichment Center. Part of our outreach to people who may be living with undiagnosed PD.

1pm: Henry County Support Group (Henry County Fairgrounds, 1106 Castle Road). First meeting of an open support group for people with PD, friends and family members. Open discussion is planned. Please call Joy Hay at 502-532-6089 or 502-396-4826 for more info.

SATURDAY, MAY 22nd

8am: Adina representing PSCKY at Grace Project Health Event.

9:30am: Walking & Hiking Club 
(Mount St. Francis Center, Indiana) Please RSVP at least 24 hours in advance to Jinn at 502-426-0888 or 502-640-7141 for complete directions and further information. Walk is canceled if no one registers or if bad weather threatens. A message will be posted as to the status of the walk by 7:30am the day of the walk.



Katherine Autin, Director of Support Services
Adina Cook, Director of Outreach & Training
Jinn Fuller Renfro, Executive Director
Proud Sponsors and Partners of PSCKY 2010 Programs & Services:
Frazier Rehab Institute
Norton Neuroscience