PSCKY logo smallParkinson Support Center of Kentuckiana Newsletter
October 4-11
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)
 
Call us!502.426.0888
 
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Dear Friends:

We hope this finds you enjoying the beautiful fall weather! PSCKY will be at Senior Day Out this Tuesday, October 6th, and we hope we'll see you there! Stop by our booth and say hello. (Please note: between Senior Day Out and our PSCKY support groups, we will NOT be in the office Tuesday!)

Several people from Kentucky are heading out to the Southeastern Parkinson Disease conference at the end of this week, and we wish you each and all a safe journey. We're looking forward to hearing your reports and feedback as your help us expand the PSCKY Annual Symposium in 2010.

If you do not want to receive this weekly newsletter, please unsubscribe using the links below. If you have news, ideas or suggestions, please feel free to email us!

NEW IN OUR LENDING LIBRARY
We have a variety of new books and DVDs in our lending library, including the JUST RELEASED "Ask the Doctor about Parkinson's Disease" by Michael S. Okun, MD and Hubert H. Fernandez, MD. Written by two of the most well-known and respected experts in the field, the doctors answer questions in easy-to-understand language. Topics covered include:

  • What is Parkinson's Disease
  • Adjusting to life with PD
  • Motor symptoms
  • Non-motor symptoms
  • Drug treatments
  • Alternative & complementary treatments
  • Multidisciplinary treatments
  • Surgical treatments
  • Stem cell, gene therapy, transplants and other treatements
  • Ten things on the horizon for treating PD
As with all of our lending library materials, you're welcome to come by on Open House Day (this month, Friday, October 16th from 10a-2p) to check out materials or request that materials be mailed to you or brought to a neighborhood support group.
WHAT IS DYSPHAGIA & WHAT TO DO ABOUT IT?
SwallowingI didn't know what dysphagia was either until Darla Novosel, speech therapist at Jewish Hospital in Shelbyville, spoke to the Shelbyville support group last month. One in 17 people will develop some form of dysphagia--or swallowing difficulty--in their lifetime. Many PD patients experience some form of swallowing problems, most often in later stages of PD, but sometimes in early stages as well. If you are experiencing food sticking in your throat when swallowing, choking during eating or drinking, or a hesitation in your swallowing reflex, you may want to talk to your doctor about a referral to a speech therapist for evaluation.

There are therapies that can help with dysphagia. One therapy, VitalStim, is a non-invasive, external electrical stimulation therapy approved by the FDA in 2002. The therapy uses electrodes applied to the muscles of the throat to promote proper swallowing.

It never hurts to ask your doctor questions about ANY symptoms you are experiencing. The doctor can't treat all of your symptoms if s/he doesn't know about them, so be sure to keep a chart of symptoms and share that chart with your doctor! Katherine Autin
COOL TOOLS
Speaking of dysphagia, some people report that using a specially-designed dysphagia cup, such as this one, helps greatly with swallowing liquids.
STUDY ON AZILECT RELEASED
Did you catch the news about the recent study on Azilect? It points to the possibility that Azilect may have a disease-modifying effect that slows Parkinson's disease progression.

"The study also confirmed the safety and tolerability of Azilect and based on these results, Azilect (rasagiline) could become the first treatment for Parkinson's disease to be recognized as actually slowing the progress of the disease, the companies said. No other treatment has been effective beyond alleviating symptoms."

We visited with TEVA representative David Green here at the PSCKY offices the day after this news broke. David shared additional news: Medicaid just picked up Azilect as a Tier 2 drug. David also reminded us that if people with Parkinson's are having difficulty with this drug's costs, they may be able to take advantage of TEVA's support program.

(We also like the worksheets that are found on the Azilect site: check them out!)
AREA RESOURCES
Living a Healthy Life with Chronic Conditions, a six week peer led workshop, will be held Tuesdays from 2-4:30pm beginning October 13th at the New Albany YMCA. For more information, call Janet Manzo at LifeSpan Resources (812-948-6961) or email jmanzo@ls4.org.

If you need assistance with home heating costs, you can pre-register for help from the CAP Heating Assistance program starting today. Additional information may be found online, or by calling (502-574-1157 or 502-574-1270).

Jewish Family & Career Services (JFCS) and Klein Older Adult Program are offering an Alzheimer's Education Workshop on four consecutive Mondays starting October 19th at 7p.m. For more information, call Joan at 502-452-6341, ext. 321. The program will also be presented one Saturday (November 7th, 10a-2p, with lunch provided). For reservations, call Brenda at 502-776-6369, ext. 309.

JFCS is also offering a free workshop on movement disorders, including Parkinson's Disease, at 1pm on October 21st in the Louis Lee Roth Family Center (2821 Klempner Way). The featured speaker will be Dr. Walter Olson, Jr. Dr. Olson will be talking about variations of movement disorders and medicines used to treat these diseases. Reservations are not required. Please call Marilyn Bornstein at 502-452-6341, ext 278, for more information. Materials about PD will be available at the workshop. The location is wheelchair-accessible.
DON'T FORGET!

Monday, October 5th, 6:00pm: Shelbyville "Moving On" Exercise Group (Jewish Hospital Shelbyville Community Room (rear of hospital)).

Tuesday, October 6th, 8:30am-1:30pm: Senior Day Out

Tuesday, October 6th, noon: Louisville "Chair Yoga"
at Yoga at Crescent Hill for people with Parkinson's & care partners too!

Tuesday, October 6th, 2pm: Brownsboro Road Support Group at Thomas Jefferson Unitarian Church Farmhouse (4936 Brownsboro Rd, end of driveway to the left). This month's topic: tracking medicines, symptoms & side effects. Speaker: Dr. Jay Ferrara, Movement Disorders Center

Tuesday, October 6th, 6pm: Hurstbourne/J-Town Support Group at Home Instead Senior Care (4610 Taylorsville Rd). This month's topic: PD medicines and tracking medicines, symptoms & side effects. Speaker: Dr. Walter Olson

Tuesday, October 6th, 7pm: Floyd Memorial Hospital Support Group. For more info: 812-941-0237.

Saturday, October 10th, noon: Louisville "Chair Yoga" at Yoga at Crescent Hill for people with Parkinson's & care partners too!

All the best,
 


Jinn Fuller Renfro, Executive Director
Katherine Autin, Director of Support Services