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PSCKY
Call us!502.426.0888
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Dear Friends:
Please note in this week's calendar that I will be out of the office from Friday, April 30-Tuesday, May 4th. I will return to the office on May 5th, refreshed from a few days in the Pisgah Mountains. In the interim, the most capable Adina Cook and Katherine Autin will be here, ready and able to help you!
Don't forget to RSVP for our Wednesday, April 28th Lunch & Learn.We've a special time planned, with a "mini health-fair" from 11am-2pm and a fabulous potluck luncheon! Over 70 people have already RSVP'd; please RSVP today to 502-426-0888 or support@pscky.org, as seating is limited for this special event.
Do you consider yourself to be highly proactive with your Parkinson's disease? Do you find yourself shying away from support groups, or that you've already heard what most speakers have to say about PD? Do you find the exercise groups are a bit too basic for you? If you answered yes to any of these questions, I'm going to challenge you to help us form a new support group. The group doesn't have a name yet ("Proactive with PD"? "Seasoned PWPs"? The "Been There/Done That!" group?). I've had several people mention to me that they're thrilled to see all the new groups PSCKY is offering, but they feel as if they are personally "old hands" with PD, and that they'd like to have a group (or groups!) that more closely suited their needs. So here's the challenge: if you are one of these folks, please send your name and a brief email to Jinn explaining what YOU would find most helpful as a "seasoned, proactive person with PD". I will put these responses together, talk more with you, and we'll get some new things going. Sound good? Good!
A friend sent us this link to a range of humorous PD gifts, including a wide range of buttons and t-shirts proclaiming Parkinson's positive slogans, including:
- I May Have Parkinson's Disease, But It Doesn't Have Me
- I Make Parkinson's Disease Look Good!
- I Have Parkinson's--What's Your Excuse?
- Levodopa--Breakfast of Champions
And my personal favorite:
- Parkinson's--It's Only a Word, Not a Sentence
I think I'll be doing a little shopping there soon!
Wishing you well this week,
Jinn Fuller Renfro
Executive Director
PS: Here is a picture of our talented and passionate Board President, Amy Baach, receiving an award for volunteerism at the recent Community Health Charities' dinner.
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KENTUCKY RX CARD: DISCOUNT DRUGS STATEWIDE
The Kentucky RX Card, a statewide discount drug card program, is now available to all state residents. Cardholders receive the lowest plan price on prescriptions at participating pharmacies. There are no restrictions, income requirements, age limits or applications. The card is accepted at over 50,000 pharmacy locations across the country. The card can be used with insurance coverage with no prescription benefits and by those with high deductible plans. Obtain a card by visiting the web-site, or in-person at any CVS Pharmacy or Kmart location in Kentucky! |
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NEED ADAPTIVE EQUIPMENT? LOOKING TO SELL?
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 PD EXPERT BRIEFING: What's in the PD Pipeline?
I had the honor to attend last week's PD Expert Briefing on "What's in the Parkinson's Pipeline?" with Dr. David Standaert. I found it fascinating, and I strongly encourage you to visit the archived webcasts to view it (it should be posted this week; you may need to check back if it's not up when you first visit). Among the things I learned: - On Tuesday, we heard that Neupro is likely to be back on the US market before year's end with the FDA close to approving US distribution, and a few months for the company to gear up production back. There is a possibility, however, that it may be as long as a couple of years if the FDA requires a reformulation (breaking news on 23 April). (Edited to add: young-onset blogger "Bibmomma" blogged about this medication roller-coaster on her blog. She concludes her post with these words, "If we are strong enough to fight this evil disease...we are strong enough to voice our opinions and ask the FDA to reconsider this abhorrent decision. Please write or call the Ombudsman at the FDA Center for Drug Evaluation and Research: How to Contact the Ombudsman: Virginia Behr - Direct telephone line: 301-796-3436 - Fax: (301) 847-8752."
- DaTSCAN (a type of brain scanning) is showing promise as a tool to detect Parkinsonian syndromes in the early stage of the disease. This may bring new hope for earlier detection and treatment.
- A variety of therapeutic, protective and restorative treatments are in the development pipeline. More information in our monthly print newsletter, which should you reach you later this week. If you don't receive our monthly print newsletter, please send your name, mailing address and phone number to support@pscky.org with the heading "Add me to the monthly newsletter".
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TOSS THOSE OLD MEDICATIONS SAFELY
 Many of us are guilty of having dribs & drabs of old meds in our medicine cabinets. Medicines should be disposed of properly once they pass their expiration date--and by "disposed of properly", we don't mean flushing them down the sink or tossing them in the garbage. Bring your expired or no-longer-used medicines to these three expired drug toss events on May 20, 21 and 22, where they'll be handled and disposed of properly!- Thursday, May 20th, 10am-2pm at Our Mother of Sorrows Church (770 Eastern Parkway)
- Friday, May 21st, 10am-2pm at Family Health Center (2215 Portland Ave)
- Saturday, May 22nds, 10am-2pm at Belmont Village Senior Living (4600 Bowling Blvd)
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ON THE WORLD WIDE WEB
 PSCKY 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 300 "fans"...and we welcome your pictures, posts and conversations on our Facebook site. If you're our "fan" on Facebook, please check out the 30 Days of PD Awareness 2010 campaign we're running! Each day, we bring you information about PD from a variety of different viewpoints. If you're not yet a "fan", please register for Facebook and join us! The industrial cleaner trichloroethylene (TCE) has been linked to an increased risk of Parkinson's disease, U.S. researchers say. "TCE was once a popular industrial solvent used in dry cleaning and to clean grease off metal parts, but due to other health concerns the chemical is no longer widely used," study author Dr. Samuel Goldman, of the Parkinson's Institute in Sunnyvale, Calif., said in a news release from the American Academy of Neurology. The National Parkinson Foundation has a freshly redesigned website. Some highlights? " What's Hot in PD"(a blog on the latest in PD research), good financial tips, and checklists for doctor visits. |
 IN OUR COMMUNITY
Please attend the Wayside Christian Mission Benefit Celebration sponsored by our friends at CCCinco and held at Crescent Hill UMC (201 S Peterson Ave) on April 30th at 6pm. Wayside's awesome choir will be in concert, with Rev. Dr. Gwen Washington officiating. There will be hand-clapping and foot-stomping music! There is no charge, but donations are needed, welcome and appreciated. For more information, please call Charlene at 502-418-8270 or Donna at 502-475-3991. 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. Contemplative Outreach of Kentucky presents an Introduction to Centering Prayer on Saturday, May 8th from 10am-4pm.For location and other information, call Elayne at 502-451-1738. If you're a care partner who needs help understanding Alzheimer's or other dementia, please attend the free program on May 13 from 9-11am at the Alzheimer's Association of Greater Kentucky and Southern Indiana's chapter office in Louisville. Register by calling 800-272-3900. |
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 DON'T FORGET!
MONDAY, APRIL 26th
9am: PSCKY Staff Meeting, Jinn and Katherine
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! 12pm: Lexington Area Support Group(Crestwood Christian Church, 1882 Bellefonte Dr, Lexington). Open conversation, discussion & fellowship. For more info, call Tess at 859-278-2193. 6pm: Denim & Diamonds Gala Celebration Chair Committee Meeting. Jinn will attend. 6:30pm: Shelbyville "Moving On" Exercise Group ( Jewish Hospital ShelbyvilleCommunity 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, APRIL 27th
10:30am: Jinn meeting with Karen Jensen from Frazier Rehab
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. A $10 donation is requested, but all people with Parkinson's disease and their partners are welcome to attend.
1:30pm: Our Mother of Sorrows Support Group (Our Mother of Sorrows School Cafeteria; 770 Eastern Pkwy). For more information, call host Father Frank Eimer at 502-459-6742.
6:30pm: Shelbyville Support Group (Shelbyville Jewish Hospitalin Community Room at rear of hospital). An open support group for people with PD, friends and family members. No RSVP needed.
WEDNESDAY, APRIL 28th11am-2pm: Special PSCKY Lunch & Learn Workshop (Meadowview Presbyterian Church, 2944 Breckenridge Ln). This month at our Lunch & Learn, in recognition of Parkinson's Awareness Month, we are asking everyone to bring a dish, dessert, or appetizer with them to share with each other. "What Else Is Out There for People with Parkinson's? -- 10 Things We Bet You Don't Know About". In a unique format, each table of participants will have ten different people present information to them in ten-minute intervals on a new therapy, a practical device, or a complementary treatment for people who have Parkinson's. After all the presentations are done, you will have time to individually meet with the presenters you want to talk to. Come learn about other information that you can help you live well with Parkinson's and enjoy the company of the Parkinson's community.
6pm: Adina speaking on PD to Fourth Avenue UMC
7pm: "Even Bigger!" LSVT Big Practice Group(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: Tiffaney and Andrea. This group is now full, but we are taking a wait-list for a second group. Please call 502-426-0888 if interested.
THURSDAY, APRIL 29th
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.
12pm: Jinn and Adina appearing on KIPDA's "Savvy Seniors" Radio Show, speaking about PD
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, APRIL 30th
Jinn will not be in the office today.
10am: Katherine meeting with hosts of Floyd County, Indiana support group.
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!
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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:
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