PSCKY logo smallParkinson Support Center of Kentuckiana Newsletter
February 22-28
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:

I had the honor of attending the PAN Forum on Advocacy last week and I've been thinking a lot in the past few days about a hot topic: how many people with Parkinson's disease are there in the USA? You can read about this in the Letter from the Executive Director on our website; it will also be in the March 2010 print newsletter.

Last week, we shared some of the action steps we're taking in response to the concerns you expressed in our neurological care survey. As of this morning, five local neurologists and neurosurgeons have accepted our invitation to membership on PSCKY's Professional Advisory Board, and we hope more will follow their example:
  • Dr. David Houghton, Assistant Professor, University of Louisville, Department of Neurology
  • Dr. Irene Litvan, Raymond Lee Lebby Professor of Parkinson Disease Research, Chief, Movement Disorders Clinic, University of Louisville School of Medicine
  • Dr. Walter Olson, Director, Louisville Movement Disorders Center
  • Dr. Todd Shanks, Director of Functional Neurosurgery & Neurorestoration at NNI, Norton Neuroscience Institute
  • Dr. John Slevin, Professor of Neurology, University of Kentucky 
We look forward to partnering with these doctors in the coming months, and we're grateful for their service to our community.

I'd like to invite you to submit questions for a new column, "Ask the Doctor." Questions should be sent to info@pscky.org. Please include your name and a phone number in your note, in case we need to ask you something about your question. We will not publish your name with the question when the question is answered. We may combine questions of a similar type so that the answer may benefit more folks. This column will be ongoing, and different questions will run in this e-newsletter and in our monthly print newsletter. All questions will be archived on our website, so that people new to PSCKY can continue to learn from "old questions."

Wishing you a wonderful week ahead,

Jinn
DEPARTMENT OF UNSUNG HEROES: LEE GRIMM, PWP
Lee Grimm & RockyA month ago or so, I met a fellow on Facebook named Lee Grimm, a.k.a. "The Walking Blacksmith." Together with his service dog Rocky, Lee is walking from Oregon to Main to raise awareness for early-onset Parkinson's disease.

In Lee's own words: "Well, let's see here now. I was a professional blacksmith, welder and on site engineer for most of my professional career. Then, I found out about this little green monster called Parkinson's disease. I think many of the signs of the disease were ignored by me as just getting older and denial that I'm not totally indestructible. Due to the fact that many of my body functions that I took for granted are no longer there, I am no longer able to do that line of work. Bad coordination, no memory and poor balance are just a few of the things Parkinson's gives you to deal with. I have found that massive amounts of exercise will put our bodies into a 'healing mode' as I like to call it....I have found this out during the first part of this walk. I am now going to document the rest of the walk so people can see for themselves the benefits of exercise on Parkinson's. Let's see how the next 8,000 miles go, eh?"

You can follow Lee's journey on Facebook by friending him, or send him a word of encouragement at walkingblacksmith@yahoo.com.
FREE, GOOD MAGAZINE
If you, or someone you love, has PD, we strongly suggest that you take advantage of the absolutely free subscription to "Neurology Now." Chock-full of tips, articles, interviews and news, this publication is a "must read" on our list at PSCKY.
YOUR GREAT IDEAS...AND THE WINNER IS!
Question MarkA few weeks ago, we asked you to send us your ideas for 2010. Thank you to all who responded! The winner of drawing for the $60 e-pill medication timer is....Mr. Mercer of Vine Grove, KY. Congratulations!

Here's a sampling of the ideas you sent us:
  • Start a support group for people with MSA (Multiple System Atrophy)
  • Share more testimonials about the wonderful opportunities PSCKY provides, particularly the exercise programs.
  • Get more people with PD to become aware of PSCKY and get them motivated to get involved. When I was first diagnosed, I thought I would deal with this myself. For some reason later I went to a meeting and found that there are a lot more people just like me that can help each other. I feel fortunate that I went to that meeting and became involved.
  • Place emphasis on slowing the progression of the disease (i.e. Coenzyme Q10, exercise, etc.). I'd especially like emphasis placed on Coenzyme Q10 coverage from insurance companies for those with PD, as clinical trials support this supplement. It would behoove the insurance companies to cover this supplement for PD patients, as slower progression equals lower health care costs.
  • I think the "Ask the Doctor" column will be really useful. Since it is usually a few months between visits to our doctors, there are always questions that come up that could be easily answered by an idea like this. You may also want to include what other PD families' answers and experiences have been, since everyone is different. Even though they may not be "official doctor" answers, they may be useful to people like us who wonder what is "normal" and what is something serious that we should address to our doctors when we do get to see them.
LIBERTY: PRODUCT FOR MEN'S BLADDER CONTROL
Liberty is a new product for men's bladder control which we learned about last week from Aaron Willis with Premier Caring Hands. Designed to eliminate the need for adult diapers, briefs and pads, this simple product provides safe, effective and comfortable bladder control for men. You can call Aaron at at 502-384-1840 to learn more. We also have brochures on the product at our office; we'd be happy to send you one...just send an email to support@pscky.org. Liberty is reimbursable under Medicare, most state Medicaids and private insurance. It is also available through the VA and TriCare.
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.

Search and Help PSCKY: Install 'GoodSearch' on your work and home computers. This simple toolbar offers a small donation to PSCKY for each search you do and purchases made from many of the major online stores. It also offers you coupons at many of the major online stores (such as Office Depot) if you access the store through the toolbar. It takes only a moment to install, and it is safe to use. In the 'Who Do You GoodSearch For?' section, enter 'Parkinson Support Center' and you'll be moments away from helping!
IN OUR COMMUNITY
Norton Audubon Hospital is offering a free eight-week series of classes for caregivers of adults age 65 or older. The programs are Thursdays from 4-5pm. For more info, call 502-636-7014.
  • February 25th, Making Sense of Legal Documents: POA's, Wills & Advanced Directives
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!

The Alzheimer's Association invites you to a special evening with David Troxel presenting "The Best Friend's Philosophy of Dementia Care," Tuesday, March 2nd at 6pm at the Park Inn Louisville East (1903 Embassy Square Blvd). Please register by Monday, February 22 at 1-800-272-3900 or toonya.cox@alz.org.

Celebrate Women's History Month with An Evening with Tori Murden McClure, the first woman to row alone across an ocean, Tuesday, March 2nd from 7-8pm at the Carnegie Center for Art & History in New Albany. Free event, but reservations are required. Call 812-944-7336.
dontforget
DON'T FORGET!

MONDAY, FEBRUARY 22nd

Noon: Lexington Area Support Group
(Crestwood Christian Church; 1882 Bellefonte Dr, Lexington KY). Discussion & fellowship. Remember to bring a lunch; drinks are provided. If Fayette County Schools are closed, this group will not meet. For more info: call Tess at 859-278-2193.

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 23rd

9am: Staff Meeting; PSCKY staff will meet to finalize plans for the next 15 months and to discuss the launch of two new programs related to outreach and education.

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.

WEDNESDAY, FEBRUARY 24th

12pm: PSCKY Brown Bag Luncheon (Meadowview Presbyterian Church; 2944 Breckenridge Ln, Louisville KY). Topic: Falls Prevention & Home Safety Assessment. Assess your home for safety issues related to PD; enjoy an interactive falls prevention session and learn how to fall more safely. No RSVP required; bring your lunch; PSCKY will provide drinks & desserts. See you there!

5:30pm: Young Men's Group (first meeting)
(2525 George Rogers Clark Pl #305, Louisville KY). Christopher Miller will host and cook dinner for the group at his condo. At this first dinner meeting, the group will discuss where and when they want to meet and what activities they want to focus on. If you are man in your 30s, 40s or 50s and have PD, please contact Christopher at 502-415-4747 or email cemiller55@gmail.com to RSVP.

THURSDAY, FEBRUARY 25th

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: "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. Adina Cook will be attending to observe the group today.

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 26th

10am-2pm: PSCKY Monthly Open House (PSCKY Office, 4912 US Hwy 42 Ste 105, Louisville KY). Stop by and take materials home with you about PD. We have some great new books in the lending library, and we're always happy to sit and visit with you during this time. No need to call--just come on by!

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!



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