Know someone who's a UofL Football Fan? Want to help PSCKY? We're blessed to be hosting a private reception with University of Louisville's new head football coach Charlie Strong on Thursday, June 17th from 6-7:30pm. All proceeds benefit PSCKY. Drinks and delicious hors d'oeuvres will be served. Live music by Bobby J, too! This is a chance to get up close and personal with Coach Strong.  Tickets are $125. Call Jinn at 502-426-0888 to reserve a place, or tell a friend!

Our thanks to Debbie Buckler with the Sure Steps group for sharing these notes from Dr. Hubbard from the Hubbard Clinic (893-3510). Dr. Hubbard will address our Brown Bag Lunch & Learn on August 25th; mark your calendars now!

1. Dietary: stay away from caffeine and artificial sweeteners. Of the artificial sweeteners, pink is the worst, followed by blue and finally yellow. Fruit juices (especially orange and grapefruit) and diet colas are also bladder irritants.
2. Medications: there are seven primary medications used including Sanctura, Vesicare, Ditropan and a gel medication, Gelnic. Side effects include constipation and dry mouth. It can take experimentation with the different medicines to come up with the best one that won't cause side effects for the user.
3. Kegel Exercises: bladder exercises can strengthen the muscles around the bladder to help control urges and allow time to get to the restroom. They can be taught in the doctor's office. (Here's a link to Kegel exercises for women, and a link to Kegel exercise for men.)
4. Surgical Intervention: Interstim surgery is done after a trial period. A voiding diary is completed before and after a temporary stimulator is placed in the S3 sacral nerve in an office procedure. If a difference is determined, a permanent implant is put in place in the hospital. The cost for permanent placement is about $25,000. For insurance to cover, doctor must state it is for incontinence rather than Parkinson's disease. Medtronic makes this implant. At this time, results have only been temporary, with some people getting longer results than others. A problem that can arise is movement of the implant, in which case, the implant has to be replaced. The implant is placed in the upper buttock, so it can be damaged in a fall.
   
5. Future Treatments in the Works: Botox treatments are being tested now, but probably won't be available for use for about 1-1/2 years. Botox is injected into about 20 places in the bladder during a cystogram. The problem faced at this point is determining the right amount of Botox to use. If too much is used, temporary paralysis of the bladder may result (however, this will be worked out before it is used on patients).
   

Our friend Jerry Oetken shared an article by award-winning journalist (and person with multiple sclerosis) Richard M. Cohen with us recently. It offered these tips to help you keep health problems from taking over your life.

• Life the life you had planned for as long as you can. (You're still the same person. Too many people trade in their dreams when they find out they have a chronic illness. Even if you're confined to a wheelchair, don't withdraw from society. It will be more difficult, but staying involved is what keeps us going.)
• Don't be shy about asking for help. (For every person who won't help you, there are two who will! Don't let negative thinking convince you that no one wants to help if you get one rejection.)
• Avoid shutting others out. (In most cases, family members are there to support you because they want to be there.)
• Beware of self-pity. (Self-pity is poison. It lets you off the hook and makes you a victim.)
• Find your community. (Even if you are not open to joining a support group, you can seek out other people who share a common bond--be it bridge, politics or reading.)
• Don't feel obligated to tell everyone about your condition. (It's your decision who to tell and how much to tell.)
• Appreciate yourself for who you are. (Focus on what you can do in the here & now instead of what you can't do.)
• Know that you can be happy! (You can be happy. Disease adds dimension to a person and depth to a soul. In the end, that's not so bad.)
  

Clinical trials are carried out in PHASES. Person with PD and PSCKY Board Member Karen deGraaf gave a fabulous presentation on clinical trials during the May Lunch & Learn. In this article, she tells us more about the phases of clinical trials. Remember, you can get more information about clinical trials on our web-site!
 
Very few medical conditions have a single treatment. We know that this is very true for Parkinson's disease. For many patients current treatments can be enhanced with new or innovative techniques. So, clinical trials are important especially regarding what PHASE a study is in. It does not hurt to stay very knowledgeable.
 
As you know, clinical trials involve participation of people in medical research. The only sure way to find out whether a new treatment is safe, effective and better than other treatments is to evaluate it.  That gift of giving one's participation in clinical trials is a brave and selfless act.  Where would we be without those volunteers? 
 
Various organizations support clinical trials at medical centers, hospitals, universities and doctor's offices across the US.  The principal investigator is the researcher in charge of the study at each facility participating in the clinical trial.  Most clinical trial researchers are medical doctors, academic researchers or specialists.  The "clinical coordinator" knows all about how the study works and makes all the arrangements.

Clinical trials are carried out in PHASES.  When you read about clinical trials you will also read about the PHASE the study is in. Each phase of the clinical trial is treated as a separate clinical trial.

PHASE I:   Researchers first conduct PHASE I trails with small numbers of patients and healthy volunteers.  If the new treatment is a medication, the studies are designed to establish the effects of a new drug on humans.  Researchers try and determine how much medication can be given safely, that is evaluating the drug for toxicity absorption, distribution and metabolism.

PHASE II:  After successful completion of phase I, a drug is then tested for safety and efficacy in a slightly larger population of individuals who are affected with the disease condition for which the drug was developed.  If it is a new treatment, the phase II trials find out the effect on the disease condition.

PHASE III: Finally researchers conduct Phase III trials to find out how new treatments for a disease compares with standard treatments already being used.  Phase III trails also help to determine if new treatments have any side effects.  These trials -which may involve hundreds, maybe thousands of people-can also compare new treatments with no treatment. These results of these trials usually provide the information that is included in the package insert and labeling.  Phase III trials are the most expensive, time-consuming and difficult trials to design and run, especially in therapies for chronic medical conditions.

Did you know that there is a post marketing surveillance trial?  It involves the safety surveillance and on-going technical support of a drug after it receives permission to be sold.  The safety surveillance is designed to detect any rare or long-term adverse effects over a much larger patient population. Harmful effects discovered by this phase may result in a drug being restricted in its use or taken off the market.

Our popular "Let's Dance" support group will resume with new sessions from Tuesday, June 8th-Tuesday, July 27th. The group will meet on Tuesdays from 9:30-10:30am at Dance Louisville. Please call 502-426-0888 to register or email us!

Mark your calendars now! The Parkinson's Action Network is hosting an interactive webcast, "Emerging Therapies--From Microscope to Marketplace" on June 24th from 2-4pm. The webcast will discuss issues affecting the development of new therapies for PD. Jackie Hunt Christensen will give an insider's view of clinical trials and how they help the entire community. Don't miss it! Visit this link & sign up for PAN's mailing list to receive reminders & access to the webcast.

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 330 "fans"...and we welcome your pictures, posts and conversations on our Facebook site.

June is National Men's Health Month. This site offers resources to encourage men to seek regular medical advice and early treatment for disease and injury.

Researcher behind a potential spin-off from Case Western Reserve University should know in about six months how they will develop their neurostimulation technology that helps people swallow. Read more here!

An afternoon nap might make you smarter. This study suggests that young adults taking a lengthy afternoon nap have increased capacity to learn.

The other week, we offered some tips to make travel with PD a bit easier. This article, "Don't Pack Your Stress", offers some helpful stress-reducing tips for people with PD.

The Farmers' Market and Multicultural Bazaar at Jewish Family and Career Services began yesterday and will continue each Sunday through October from 12:30-4:30pm. Different immigrant cultures will be featured each week. For more info, call 502-452-6341.

The Heuser Clinic will offer a Heart Makeover Event on Tuesday, June 15, from 7-8:30pm. The free, interactive experience will help you jump start your personal heart makeover. For more information, call 502-893-7833.

Choosing to Live with Parents--How Close is Too Close? is the topic of the Parenting the Parent class sponsored by the Norton Women's Pavilion on Tuesday, June 15, from 6-8pm at Norton Suburban Hospital. Call 502-629-1234 to register and for more info.

Gain insight into new trends and practices emerging in sleep medicine at the2010 Sleep Summit on Friday, June 18th from 7:30am-3:15pm at the Fern Valley Hotel and Conference Center. Call 502-629-1234 to register or for more information. There is a $30 seminar fee for this class.

Congressman John Yarmuth will host a "Build Your Skills: A Job Hunter's Guide to Success" workshop on June 21st. Click here to learn more about this free workshop!

The Pressure Cooker--a special event focused on reducing high blood pressure--will be held on Saturday, June 26, from 9:30am-2pm at the Ken Ellis Center in Jeffersonville, Indiana. Free gifts, screenings, cooking demonstrations and more! Call 502-629-1234 for more information.