Happy wins!

When given the choice of being right or happy, happy usually wins out.

Impact of actions

Kind intentions carry merit, but kind actions have real impact.

What Is It Going To Take?

I am quickly nearing the age of 50. To many of you reading this, 50 isn’t old. I don’t consider 50 old either, but I have had Parkinson’s disease since age 17, and that means I’ve had it for a long time.

When I was given my diagnosis at the age of 23, I was told by several people in the PD community that I would see a cure in 5 or at least 10 years. A quarter of a century later, I didn’t expect a cure but I had hoped science had developed better drugs, therapies, and that hospitals and retirement homes would have better understandings of how to care for people with this disease.

What is it going to take for the world to understand Parkinson’s disease? What is it going to take to develop new drugs with fewer side-effects? What is it going to take to get Parkinson’s disease seen as an illness that needs assistance, right NOW!

Partners in Parkinson’s DC event this Sunday 10/12

This Sunday marks the first Partners in Parkinson’s event in Washington DC. The event is a full day of education on living with Parkinson’s and learning about resources in the DC/VA/MD/DE/WV area. I encourage you to come and be a part of this free event. Wednesday 10/8 at 12 pm is the deadline for registering online. You can register as a walk up on the day of the event.

As part of the Partners in Parkinson’s event, there will be a Resource fair that includes representatives from universities that have Parkinson’s programs, local and regional support and exercise groups, vendors who provide services to our community and many more community resources.  It’s a great opportunity to meet with the staffs of these organizations and network.

You also have the opportunity to hear from those living with Parkinson’s, their carepartners, and allied health professionals who work with the PD community.

Register online and find out more at: https://www.partnersinparkinsons.org/attend-an-event.  There are also upcoming Partners in Parkinson’s events in Philadelphia, Chicago, Denver and Los Angeles before the end of 2014.

P.S. Read my September blog posting discussing other upcoming PD Educational Events this fall.

As we near the end of Summer & Fall PD Educational Events

I recently had the opportunity to express my thoughts about the tragic death of Robin Williams for the good folks at The New Republic. I’m happy to say and thank you all for receiving it so well. If you missed it, and would like to take a look at it, here’s the link: http://www.newrepublic.com/article/119108/robin-williams-death-was-great-loss-parkinsons-awareness

I have to hand it to the ALS Association on a brilliantly executed social and fundraising campaign in their “The ALS Ice Bucket Challenge” campaign. I tip my hat to the viral fervor and momentum that has spread so fast. Raising $80 million dollars in just a matter of months sets an example and is a challenge, that few organizations can match or achieve.

In June, I was fortunate to have attended the Partners in Parkinson’s (PiP) event in NYC, put on by the Michael J Fox Foundation,  Abbvie, and The Davis Phinney Foundation. It was a day of education and learning to live well with Parkinson’s. I’m honored to be the co-ambassador for the Partners in Parkinson’s event in Washington, DC on October 12th at the Washington Hilton. If you are dealing with Parkinson’s and can join us, I encourage you to learn more about this event. The event is free. To learn more and register online visit: https://www.partnersinparkinsons.org/attend-an-event

Please share this information with friends and your support group members.

There’s a whole host of Parkinson’s educational events coming up this fall. I encourage you to add these to your calendar. Here’s a listing of some of the ones I’m aware of:

September 10 – December 10
Therapy Matters
Hampton Roads APDA Chapter
Click this link to view the brochure for the series speakers and titles -http://hrparkinsons.com/events/fall-2014-therapy-matters/

A series focused on the diversity and impact of therapies for neurological conditions. To RSVP for one or the entire series of sessions, please call 757-495-4211 or visit http://ourladyperpetualhelp.com/happenings
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Saturday, September 13, 2014
Caring for Parkinson’s, Caring for YOU – Parkinson’s Symposium
Parkinson Association of the Carolinas
9:30am – 1:00pm
Calvary Church, Crown Room, 5801 Pineville-Matthews Road, Charlotte, NC 28226

This is a FREE educational symposium with keynote speaker, Dr. Danielle Englert, a movement disorder specialist with Carolinas Center for Parkinson’s Disease and Movement Disorders.

For more information, visit: http://www.parkinsonassociation.org/events/symposium/
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Saturday, September 13, 2014
SING OUT!
2:00 P.M.
The Heights Baptist Church, 201 W. Renner Road, Richardson, Texas 75080

Join us for a family-fun performance by The LOUD Crowd from the Parkinson Voice Project. Enjoy 1960s music, along with the endearing antics of Lamb Chop and Mallory Lewis, the daughter of Shari Lewis, who first introduced the charming sock puppet.

FOR RESERVATIONS CALL 469-375-6500
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Wednesday, October 1
Morris K. Udall Awards Dinner
Parkinson’s Action Network
Washington DC

Join the Parkinson’s Action Network (PAN) and the Parkinson’s community for the Morris K. Udall Awards Dinner in Washington, DC on Wednesday, October 1.

PAN will present Rep. Henry Waxman (D-CA) with the Morris K. Udall Award for Public Service and Israel Robledo, Texas State Director, with the Milly Kondracke Award for Outstanding Advocacy. In addition to the award presentations, there will be a red carpet reception with on-camera interviews and entertainment. The highlight of the event will be a special guest in a
one-on-one interview with good friend of PAN and recent National Humanities Medal Awardee Diane Rehm.

To learn more or purchase tickets, contact Christopher Vance at cvance@parkinsonsaction.org or 202-638-4101 x108 or
visit the PAN website for more information.
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Saturday October 11, 2014
2014 Richmond Parkinson’s Disease Community Education Day
8:00 AM – 3:30 PM
Mount Vernon Baptist Church, 11220 Nuckols Road, Glen Allen, VA 23059

Sponsored by: Virginia Commonwealth University Parkinson’s Disease and Movement Disorders Center, University of Virginia Parkinson’s Disease Center, APDA Richmond Metro, and Richmond PADRECC

People with Parkinson’s disease (PD), their family and friends, or anyone interested in learning more about PD are invited to the annual Parkinson’s Community Education Day.

Registration is $25 per person and includes continental breakfast, lunch & afternoon refreshments.

General sessions include:
Integrative Medicine – Dr. Monique Giroux, DBS & Quality of Life – Dr. Kathryn Holloway, Nutrition – Dr. Marian Evatt
Break out session offerings:
Exercise – Dr. Jeff Hoder, Video Game Research – Dr. Ben Herz,, Caregiver/Care Partner Challenges, PD 101

Visit the conference website for a full agenda, hotel accommodation rates and location information. http://events.r20.constantcontact.com/register/event?oeidk=a07e9en180b79579468&llr=6gtnvbkab
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Sunday, October 12, 8:00 AM – 4:00 PM
Partners in Parkinson’s – Washington DC
Washington Hilton, 1919 Connecticut Ave NW, Washington, D.C. 20009

Partners in Parkinson’s (PiP) is a free educational event for people with Parkinson’s and their families by the Michael J Fox Foundation for Parkinson’s Research. Breakfast and lunch will be provided. The program features presentations and panel discussions with local Parkinson’s specialists, research experts and patient panelists. It also includes a resource fair to connect attendees with local support groups, clinical sites, allied healthcare providers, and more. For more information or to register, visit www.partnersinparkinsons.org .

There are also PiP events in Atlanta 9/13, Boston 9/20, Philadelphia 10/18, Chicago 11/1, Denver 11/8, and Los Angeles 12/6.
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Saturday, November 8, 2014
Johns Hopkins Movement Disorders Symposium
8:30 a.m. – 3:30 p.m.
BWI Airport Marriott
1743 W. Nursery Rd
Linthicum, MD 21090

Register today to learn more about the latest in the management of movement disorders from experts at Johns Hopkins Medicine and other health organizations in Maryland.

Contact: Bailey Vernon, 410-616-2811to learn more or to register. Or visit this website for an agenda and brochure for the event.
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November 13 – 16, 2014
The Victory Summit® Symposium and Parkinson’s Community Weekend
Greenville-Spartanburg, South Carolina

Visit the Davis Phinney Foundation website to register for The Victory Summit
 and visit this page  for a detailed schedule of the weekend’s events!

Effort

In the American mindset, most of us associate the accumulation and increase of rewards to being a positive endeavor.  When it comes to Parkinson’s disease, more can mean an array of new challenges. Parkinson’s doesn’t have to get worse, but it can, and if so, it forces you to work harder and put forth more effort in maintaining your well-being.

What was once second nature may not be second nature farther down the road. Movement, speech, or balance which you once took for granted, may now take concentration and real focus. The workload doesn’t lighten. Should the illness decide to move forward, that is our calling to put forth an even more diligent retaliation.

Life maintenance is enough of a challenge without an obstacle like Parkinson’s in your life. Throw in the turmoil and anxiousness of an unexpected health roadblock and you just may feel like the rug got pulled from underneath you. Surprise!

This is the fork in the road where you make the choice to let fear and despair win over, or you make the effort to continue your life by making adjustments and allowing for flexible changes in your life. Some alterations in your life may seem like sacrifices but give yourself some leeway and remain hopeful. Going to the dark side will only make you bitter and demand greater effort.

Karl Robb is the Author of the book A Soft Voice in a Noisy World: A Guide to Dealing & Healing with Parkinson’s Disease. Available in most electronic formats and paperback.

10 Tips for Staying Positive and Proactive

I recently developed this list for the Parkinson’s Wellness Chapter in Cincinnati (http://www.parkinsonswellness.org/) OH.   I thought I should make it available to all of you, so here’s the list:

10 Tips for Staying Positive and Proactive

  • Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.
  • Appreciate the good in every day. Focus on what you can do, not what you can’t do. Savor and appreciate everything.
  • Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible  pole will bend and give in the wind. Being more flexible will add a new dimension to your life.
  • A person with a good attitude is much easier to be around and is good for our well-being.
  • Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!
  • Explore the stressors in your daily life. Find an outlet to help you release your stress.
  • Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.
  • If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!
  • Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.
  • The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.

I hope these are helpful to you.

Karl