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PSCKY
Call us!502.426.0888
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Dear Friends:
Oh, it's so nice to be back! Thanks to all who sent their well-wishes for my time away the other weekend. I've a special treat for you below! :)
We're going to streamline the e-news a bit this week, so please read this note with some care, as it covers important topics!
Once again, we're looking at a week that is literally filled from dawn till dark, seven days a week, with PD related events. This week, I'd like to call your attention to the INCREDIBLE work that our Director of Outreach and Training--Adina Cook--is doing in the community. As you'll see in our calendar at the end of this e-mail, Adina's giving basic info talks and screenings at a variety of locations. In fact, this week sees her all over town, including a very special event at an elementary school, where she'll share some info about PD to fourth and fifth graders.
Now, at first blush, it may seem strange to talk to little children about PD. But, as I was vividly reminded last week when I attended lectures by Dr. Olanow (more info later in this newsletter), we're looking at a PD surge that threatens FOUR TO FIVE MILLION US RESIDENTS in the next 30 years. I hope that these children, themselves, will not be facing a diagnosis of PD. Yet we know that many of these bright young souls will be facing the situation where a parent or grandparent is diagnosed with PD. Through Adina's talk, they will have the early seeds planted of useful information to deal with such a diagnosis. I don't know about you, but I feel reassured when I see Adina out in the community giving information about PD to young-'uns. Of course, instead of our usual, excellent screening tool, she'll be taking some coloring pages along! I hope to show you some pictures of those vivid PD Tulips in bloom next week.
I had three different folks contact me last week asking me to send them some basic information tools to share with friends and family members about our work. THANK YOU! It's pleasing to know that our community--who did not CHOOSE this disease--is so brave and fierce and communicative with others about both the NEED related to PD and the HELP available from PSCKY. If you would like me to send *you* materials to share with people you know, just give me a call at 426-0888 or on my cell at 502-640-7141. It warms my heart to see folks who benefit from our services reach out to their friends and family and saying, "Next time you consider making a charitable gift, here's a deserving organization." THANK YOU! We need your support and this is a grass-roots way to provide that support.
Many of you responded to my question about more challenging activities for people with PD. May I please challenge you to take this brief survey about a new fitness group for people with PD who want to radically address their fitness levels?
Now, on a less cheerful note....recent phone calls have raised a concern about the care that our veterans with PD may be receiving. I'm looking to put together a working committee consisting of legislators, former legislators and people with PD who are veterans to open a dialogue with the VA in Indiana and Kentucky about PD-related issues and the continuum of care for veterans with PD. If this is something that moves you, would you please let me know? Again, you can reach me at 502-426-0888 or on my cell phone at 502-640-7141. I want to also remind you that there are some excellent resources for veterans posted on our website.
Wishing you well this week,
Jinn Fuller Renfro
Executive Director
PS: Here are a few pictures from the Pisgah Mountains.
Jack-in-the-pulpit
 | A tumbling mountain creek  |
Wild phlox blooming  |
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ASK THE EXPERT
This month Frazier Rehab is happy to answer questions that PSCKY members have submitted. With a team of trained physicians and therapists, Frazier Rehab has the medical expertise to develop a specialized care plan for patients with Parkinson's disease. Every person's case can be different and as such, the answers below should not be substituted for an individual evaluation. To schedule a physician appointment or speak with a physician about specific issues, contact the University of Louisville Movement Disorders Clinic at 502-589-0802. For general Frazier Rehab/UofL Movement Disorders Program information or questions, call 502-582-7654.  Q: My husband has Parkinson's and in the last couple of years, he has started talking in his sleep and sleep walking. He never did this before he was diagnosed with Parkinson Disease. Could the two be related and what can be done to control these actions?A: You are describing a sleep disturbance called REM Behavioral Disorder, also known as RBD. RBD is commonly associated with Parkinson's disease and may appear years before any other symptoms. Other symptoms that can appear early (before slowness, stiffness or tremors) are loss of smell, constipation and depression. It is important to know that some Parkinson medications can help RBD while others can make it worse. As such, you should work individually with your physician to determine a treatment plan to control these symptoms. Q: I had lasik surgery about 6 years ago (before I knew I had Parkinson's) and the eye doctors gave me mono-vision. About 6 months ago, I had cataract surgery and new lenses put in while maintaining my mono-vision. However, ever since my cataract surgery, my eyes 'jump' and I can't focus very long - I lose my place when reading across a line of words. Is this a common problem and is there anything I can do about this? A: Vision and eye movement problems are not commonly associated with Parkinson Disease, except for some difficulty in looking at things from near to far and vice versa. The movement you describe can be seen in other neurological diseases. It is recommended that you be evaluated as soon as possible by a Parkinson Disease specialist or another neurologist. It is also important to note that Lasik surgery helps problems with visual acuity (the need for glasses to see clearly) and not eye movement problems (which may be helped with prisms).  |
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IS PD A PRION DISORDER?
I had the privilege of attending two lectures last week by Dr. C. Warren Olanow (Mount Sinai School of Medicine). Dr. Olanow is a renowned researcher and neurologist, and was the co-principal investigator in the recent ADAGIO study on Azilect. In the morning lecture, Dr. Olanow spoke at length as to a breaking new theory in PD: that PD may be a prion disorder. Basically, prion disorders are "protein cancers". Prions are proteins which are normally present in the body and perform essential functions. However, if they come into contact with a particular toxin or heavy metal (or another twisted prion--the "bad apple" effect), then they too twist and distort. When they fold in such a way that the body enzymes cannot break them down, they cause problems. The best documented triggers for prion disorders are heavy metals, pesticides and some natural toxins (but there may be others). Dr. Olanow's recent research has led him to wonder if PD may be a prion disorder. A paper released last year presents intriguing insight into how α-synuclein may not only misfold, but transfer itself to healthy cells. To quote directly from the article: "It is thus possible that PD is a prion disorder resulting from increased
production and/or impaired clearance of proteins
such as α-synuclein, leading to misfolding and the
formation of toxic oligomers, aggregates, and cell death. Further, it is
possible that α-synuclein is a prion protein that can
self-aggregate and be transmitted to unaffected cells, thus extending
the disease process. While genetic causes represent an
obvious source of increased levels of aberrantly folded α-synuclein
in familial PD cases, a combination of aging,
oxidative stress, inflammation, environmental toxins, hereditary
factors, and
impaired clearance may all feature in varying ways in
causing altered metabolism of α-synuclein, resulting in the pathogenesis
of sporadic PD. This concept suggests that drugs
directed toward reducing the formation and/or facilitating the clearance
of misfolded α-synuclein, so as to arrest or reverse
the self-propagation process, might represent a novel therapeutic
interventions
for the treatment of PD."
I found both of Dr. Olanow's talks to be incredibly thought-provoking. As I mentioned in my letter at the start of this e-mail, and as Dr. Olanow reminded the medical students attending the lectures, we are looking a growing number of the population facing the possibility of a PD diagnosis. I am cheered the talented minds--such as Dr. Olanow's--are hard at work at pioneering research. (You can read an older interview with Dr. Olanow here.) |
 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. 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. The Girl Scouts of Kentuckiana are hosting an E-Waste Recycling Day on Saturday, May 15 from 1-4 at 2115 Lexington Rd. Inkjet cartridges, DVD players, TVs ($5 fee) can be recycled and a shredding truck will be available. For more info, call 502-636-0900. The Thoroughbred Chorus will be singing at 3pm on May 15th at the 18th Annual Arts, Crafts, Garden & Antique Festival: "A Victorian Chautauqua" at the Howard Steamboat Museum (1101 E Market St, Jeffersonville IN). Don't miss this free event! 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. |
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 DON'T FORGET!
MONDAY, MAY 10th
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! 10am: Staff Meeting--Jinn & Adina to review sections of paid caregiver certification program
1:30pm: Lexington Area Support Group(Crestwood Christian Church, 1882 Bellefonte Dr, Lexington). Today's meeting will include a demonstration of chair yoga and laughter yoga, combined with gentle breathing techniques. For more info, call Tess at 859-278-2193. 5:30pm: Sure Steps for Care Partners Support Group ( Famous Dave's Barbecue). RSVPs requested to Debbie at 502-599-9461. 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, MAY 11th
9:30am: Nazareth Home Support Group (Nazareth Home, in the chapel) This group is presently open to family members & people with PD who reside at Nazareth Home. For more info, please contact group host Kim Hobson at 502-459-9681.
9:30am: Walking and Hiking Group (Anchorage Trail). 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: Adina giving talk and screenings at Trinity Seniors.
11:30am: Katherine attending monthly meeting of TRIAD group.
12pm: Adina giving talk and screenings at Broadway AME.
WEDNESDAY, MAY 12th
12pm: Adina speaking on PD and providing screenings in partnership with ElderServe at the Oak and Acorn Community Center.
3pm: Katherine training new support group host.
6pm: PSCKY Board Meeting. Jinn will attend.
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: Bernie Didio and Sandy Alvey. This group is now full, but we are taking a wait-list for a second group. Please call 502-426-0888 if interested.
9am: Jinn meeting with Becky Jenkins to discuss USB Medical Cards.
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.
9:30am: Adina giving presentation to 4th and 5th grade students about PD at Kennedy Elementary School.
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.
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 14th
Katherine Autin out of the office today.
9am: Jinn meeting with Denny Koch.
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!
2pm: Adina giving talk and screenings at American Village.
SATURDAY, MAY 15th
8am: Adina representing PSCKY at Grace Project Health Event.
9:30am: Walking & Hiking Club (Blackacre State Nature Preserve and Historic Homestead) 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.
2pm: Oldham County Support Group (LaGrange Family Care Doctors) This group is open to people with PD and loved ones. This month's speaker is Iris Frederick, a person with PD who will talk about the Deep Brain Stimulation surgery she had recently. Open conversation will follow. For more info: call Katherine at 502-426-0888.
SUNDAY, MAY 16th
11am: Adina presenting about PD and conducting screenings at St. Martin de Porres Church.
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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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