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 Alzheimer’s Society on a brillantly executed social and fundraising campaign in their “take a plunge” 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

April is Parkinson’s Awareness Month – News and upcoming events

It’s been a long, cold winter and I’m coming out of hibernation. I promise to start posting more as the days grow warmer.  I want to share with you this picture of the first tulip to arrive in my garden.

April is Parkinson’s Awareness Month so, I urge you to learn about Parkinson’s disease (if you don’t know about Parkinson’s), teach (educate others about Parkinson’s), or help (if you can volunteer or donate) to any of your favorite Parkinson’s charities!

PD Awareness month tulip - Karl Robb - asoftvoice.com

Here are a few of my upcoming events happening this month:

Please join me Easter Sunday, April 20, 2014 5pm EDT/2pm PDT on Sunday Connections. My wife, Angela, and I will be taking questions about living with and improving your Parkinson’s.  Below is the call in (by phone) or web link:

Sunday, April 20th at 5:00pm EDT /2:00pm PDT
Guest pin code: 200414#
Primary dial in number: (425) 440-5100
Secondary dial in number: (323) 476-3997

Attend by Web:
http://InstantTeleseminar.com/?eventid=53148153

If you are unable to be live on the call, you can submit your questions ahead of time by visiting the weblink and then listen to the recording for your question.

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I will be speaking and signing books at the Parkinson’s Disease Education & Support group at the PADRECC in Richmond, VA  on April 24 1-3pm EDT.

Click here to see the flyer for the event.

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On April 26, I will be speaking at the Spring Education Forum of the Parkinson’s Wellness Chapter in Mason, OH.  I will be speaking in the morning and afternoon.  I will also have books for sale and will be signing books.  If you would like more information on this event and to register, visit this website to register.

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On May 3rd, I will be an exhibitor and Reiki practitioner at The Victory Summit hosted by the Davis Phinney Foundation in Dallas TX.  This is a free event for the Parkinson’s community.  To find out more and register, visit the foundation’s website: http://www.davisphinneyfoundation.org/victory-summit/upcoming-victory-summits/victory-summit-dallas-tx/

 

Join me today 2/16 Sunday Connections with guest Reiki Master Megumi Abiko

I hope you can join me today for this exciting event!

Join Karl and Angela Robb this Sunday at 5pm EST/2pm PST  as they host Sunday Connections http://www.sundays.parkinsonsrecovery.com/ with guest Megumi Abiko, Reiki Master Teacher of Reiki Jin Kei Do.

Here is Megumi’s bio:  Having gone through a spinal injury and being told my prognosis was being paraplegic was a HUGE wakeup call!  I was fortunate to have a friend who introduced me to essential oils that stopped the swelling in my spine so that I regained full mobility! With that experience, it fired my interest to learn more about Holistic health. Each day I realize how powerful Essential Oils and Reiki is in my life!  Through my practice, I’ve seen firsthand how the combination of the modalities can benefit all aspects of your life: Mental (behavior modification, stress management, emotional release, depression), Physical (backaches, allergies, and other diseases) and spiritual. I feel lucky to have been taught great gifts to add to my tool box that will help me, help others, become empowered one person at a time.

You can submit questions online ahead of the event by using this link: http://InstantTeleseminar.com/?eventid=51628782 .  Click the “Ask a Question” link and complete the information in the box that appears below the button.

Here’s the Link for listening online for Sunday Connections. Listeners online can listen to the live event and can submit questions.

http://InstantTeleseminar.com/?eventid=51628782

Or if you would like to call in, in which you can ask the hosts and guest questions live and listen to the event.

Primary dial in number: (425) 440-5100
Secondary dial in number: (323) 476-3997
Guest pin code: 200414#

Relying On Our Intuition

Our intuition is what keeps us stable and on an even keel. Intuition is what we think is right, for the moment. It is that gut feeling or sense of how to react to the immediate task, threat, or situation.

When Parkinson’s compromises our intuition, we second-guess ourselves and become unsure of our senses. Parkinson’s has a way of interfering with our perception, our emotional reactions, and our ability to interact with others. When it gets in the way of our senses it can cloud judgment, cause anxiety, show signs of paranoia, and be a threat to our overall cognition.

In the past year, I am saddened to report that I have seen Parkinson’s take a toll on several friends. In some friend’s cases, I have seen personalities change, mood swings, and confusion.

Watching people who we care about, whether they have Parkinson’s or not, is never easy. The best that we can do is to be there for them and support them as best we can, as a good listener and a trustworthy and dependable resource.

Here are a few suggestions to try to override anxiety and potential cognitive issues. These may bring some calm and enjoyment. These are a few activities that I hope may help you:

Keep active!Exercise!

Play games that make you think fast. Try video games (Nintendo Wii, Xbox) or brain games like, Lumosity.

Dance, sing, or try playing an instrument. You don’t have be a virtuoso.

Stretch.Keep limber in body and mind.

Try meditation. Try Yoga. Keep an open-mind to getting better!

Let’s have a great New Year together!

Karl

A Mindful Christmas

As Christmas nears and I think about the coming New Year, I ask myself what is it that I need to express at this time? I cannot deny that this time of year as joyful as it can be, reminds me of the loss of many who were dear and near to me. I am forever grateful to have had them in my life, yet selfishly; there is a definite void without them.

My goal this Christmas and beyond is to transcend the sense of loss and focus more on the lessons of strength and character that those who have departed have taught me. The best tribute that I can provide them is to remember them well and to do my best in making them proud.

This is a special time of year for holiday gatherings and loved ones coming together. Holidays may bring much joy or undue anxiety, stress, or sadness. This Christmas and New Year’s keep in mind these few reminders and know how grateful I am to you for taking the time to read my work:

-Don’t get lost in the commercialism of the holidays! It’s not about what you got or didn’t get. If you feel that you didn’t give enough to someone or some charity, there are 364 other days to help them out.

-Seek a solution! If you have physical pain, that can lead to emotional and spiritual pain. Any of the 3 may lead to the other, for that is the mind-body-spirit connection. Seek help, if you need it!

-Be mindful and realistic! We all have what we categorize as “good days” or “bad days” but it takes both for a complete experience. Appreciate both.

-Show kindness to those around you as well as yourself. We never really know what others are experiencing, so show some compassion. Don’t beat yourself up about  some event that did or didn’t turn out as planned.

-Don’t stress, breathe! Remember to have fun, enjoy those with whom you are celebrating, and fight stress through deep breathing and meditation.

These are just a few personal tips. If you think you are depressed seek professional help. I am not a doctor.

I wish you a very Merry Christmas and a Happy New Year!