Did you know that while 82% of people with PD know that exercise can improve their quality of life and overall function, only about 36% have actually discussed exercise with their physician, neurologist or movement disorders specialist? Less than 42% have discussed depression with their physician and only 33% have discussed nutritional needs with their physician. The Davis Phinney Foundation has launched the "Every Victory Counts" program to try to inform and empower people to live well with PD. They have created a new manual featuring information, tips and tools in areas such as:

• PD diagnosis & management at all ages and stages
• Exercise, diet & nutrition
• Emotional health, including depression & intimacy
• Caregiver/care partner guidance
• Hospital stays & emergency room visits
• PD resources
• More than 15 worksheets to stimulate action & information sharing
• Medical appointment planning, contact info, symptom diary, medication log and appointment checklist.

The manual is available for a donation of $22.50 and can be ordered online or by calling 1-877-279-5277. Folks who get the manual will also receive quarterly manual updates, DVDs highlighting new research presented, and an inspirational video by Olympic cyclist (and person with PD!) Davis Phinney.

Ever thought about taking a TARC fixed route bus, but wondered if you can manage to get on and off with your wheelchair, scooter, cane, walker or other mobility device? Would you like to have time--away from the rush of a regularly scheduled route--to practice boarding and maneuvering onto a TARC fixed route bus? If you use a mobility device, come on out on May 3, 2010 between 11:30am-1:00pm. A TARC fixed route bus will be parked behind TARC (1000 W Broadway, Louisville KY 40203) and an experienced TARC staff member will be there to provide assistance as you practice!

We also have information at PSCKY's offices about the TARC 3 Bus system. TARC 3 provides door-to-door service for folks who qualify for the program. If you've given up driving, you may want to explore Louisville's excellent TARC system as a great way to get around!

This week, we have two new additions to the great books and videos and DVDs in our lending library. Remember, we're happy to send these to your home, or you can come by to borrow. Our complete lending library is online on our website.

• A Funny Thing Happened on the Way to the Future (Michael J. Fox). In A Funny Thing Happened on the Way to the Future, Michael draws on his own life experiences to make a case that real learning happens when "life goes skidding sideways." He writes of coming to Los Angeles from Canada at age eighteen and attempting to make his way as an actor. Fox offers up a comically skewed take on how, in his own way, he fulfilled the requirements of a college syllabus. He learned Economics as a starving artist; an unexpected turn as a neophyte activist schooled him in Political Science; and his approach to Comparative Literature involved stacking books up against their movie versions.
• 29 Gifts; How a Month of Giving Can Change Your Life (Cami Walker). Just a month after her wedding, 31-year-old Walker was diagnosed with multiple sclerosis; two years later, she was bitter, isolated, and addicted to both pain medication and self-pity. In need of help beyond drug detox, Cami takes the advice of a South African healer: give away something every day, for 29 days. Walker soon learns that being mindful of giving also means being open to gifts from others, and that gratefulness and mutual generosity is the key to a better, more rewarding life.
  

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: A friend of mine has had Parkinson's disease for several years, and I've noticed that she doesn't seem at all like her old self, emotionally speaking. She is very down on herself, making a lot of negative comments about things that she does and apologizing constantly. As her friend, what can I do to help her stop the negative self-talk and focus on the positive?

A: People with Parkinson's disease commonly have issues with anxiety, depression, loss of self-esteem and a change in identity.  You can begin by helping your friend realize that she is reacting normally in her situation.  One of the first steps is getting involved with others who feel the same way.  PSCKY has many support groups she can get involved in.  If she would prefer to begin with not having face-to-face contact, online message boards and support group chats can be very beneficial.  

Another great thing you could do to provide encouragement for your friend is to offer to go with her doctor's appointments and therapy sessions with her.  Often, there is so much information to absorb at the physician appointment, it is hard for the person to take it all in.  Help her by writing down what the doctor says about medications, and offer to place her medication in weekly containers so that the dosages are taken accurately.  This is very important and some Parkinson patients become confused about whether they have taken the right medicine at the right times.  

In addition, if your friend is not currently in therapy, encourage her to ask her physician for a referral.  Physical, speech, and occupational therapists are skilled at working with Parkinson patients at all stages of the disorder.  It is important to move the body, use the voice, and continue to develop strategies for independence in daily living.  If she is not involved in therapy, encourage your friend to go on social outings with you (and you can encourage her to talk by including her in conversations).  Encourage her to take walks with you if she is able, or to walk with her should she be using assistive movement devices, such as scooters.  

Lastly, let your friend be sad, anxious, and frustrated when she needs to-that way she can vent, get it out of her system, and be prepared to go forward again.  Good friends know when to listen, when to push, and when to simply be present.

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!

5:30pm: Parkinson's with Dementia Care Partners Support Group(KT's Restaurant; 2300 Lexington Rd). Open conversation, discussion & fellowship. Aaron Willis with Premier Caring Hands will stop by to introduce Liberty, a product to help men with bladder control. For more info, call Mary Kay at 502-664-8560.

6pm: Denim & Diamonds Gala Celebration Chair Committee Meeting.

CANCELED THIS WEEK: 6:30pm: Shelbyville "Moving On" Exercise Group