Blog Archives

Enjoy #SingOut2017 Concert via Live Stream tomorrow 9/9 2pm CDT 

Watch the world’s largest Parkinson choir give a concert tomorrow, Saturday 9/9 at 2pm CDT. You can watch the performance either in person at Richardson High School

1250 W. Belt Line Road, Richardson, Texas 75080

-Complimentary Valet Parking

-Reception to Follow Performance

or watch the LIVE stream of the concert at the Parkinson Voice Project Facebook page.  For more information you can also visit: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1834

It’s so inspirational and moving to witness over 100 unified parkinson voices as one loud harmony! You need to hear it and share the triumph of these singers as they raise their voice in song. I encourage you to listen and experience this magical presentation.

Just so you know, I am a supporter and board member of the Parkinson Voice Project and have been for over ten years.

Book Review: Parkinson Voice Project

Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

My many thanks  to my friends at the Parkinson Voice Project in Richardson, Texas for this generous review of our second book!

Book Review by LOUD Crowd® Member Carol Brandle

TITLE: Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook
for Body, Mind, and Spirit
BY: Angela and Karl Robb

Having a workbook to accompany the best-selling Parkinson’s book, A Soft Voice in a Noisy
World, provides an excellent wellness tool for individuals or group discussion. Questions in the
workbook are closely paired with chapters in the book. Additionally, some questions shine light
on new ideas, such as complementary therapies like Reiki, massage, acupuncture, and
reflexology.

Karl Robb brings the same positive attitude, hope, and strength to this workbook as to his
book, A Soft a Voice in a Noisy World. Exercises which reduce stress and reaffirm strength can be
done as individuals or in communication groups, such as The LOUD Crowd® groups at Parkinson
Voice Project. A caregiver or partner might use the questions to strike up meaningful
conversation with the affected person, whether Parkinson’s is the health concern, or some other
health conditions. Either format will help you balance the connection between mind, body, and
spirit.

It’s apparent that Angela and Robb write from a wealth of experience as they direct
questions to sensitive issues, such as “What are you willing to do to help yourself?” and creating
a timeline to improve communication with a health care provider. Angela was honored in 2015
as a White House Champion of Change in Parkinson’s Disease. She and Karl also author an award winning
blog, http://www.asoftvoice.com


Angela and I have been fans, friends, and Board members of the Parkinson Voice Project for several years. We encourage anyone unfamiliar with this organization to learn about the wonderful work that they do.

Community Update – Events and Online Resources

Parkinson’s Awareness

ParkinsonsDisease.net Reaches 10k Likes!

If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!

  • Parkinson Voice Project
  • Davis Phinney Foundation
  • Parkinson Association of the Rockies
  • Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
  • The Michael J. Fox Foundation for Parkinson’s Research

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Parkinson Voice Project – Parkinson’s Lecture Series

The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.

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Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.

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Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania

Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!

Parkinson Voice Project gets mention from NWPF!

Friends doing good work!

Friends doing good work! 

My friends at NWPF in Seattle mentioned my friends at PVP in Dallas: Read all about it: https://nwpf.org/stay-informed/news/2016/04/speech-therapy-program-helps-parkinson%E2%80%99s-patients-regain-speaking-ability/

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!

There Are Such Things As Miracles–PART 1

 Life on many levels can be difficult and challenging, whether one has Parkinson’s disease (PD) or not.  The added challenge of PD only accentuates the necessity of taking better care of oneself.  It is when we neglect ourselves or fail to listen to the cues presented by those around us that we miss important and even life-changing  messages that need addressing.

The older I get, the more I am beginning to believe that things happen in life for a reason. My belief is that somewhere in the happening  there is a nugget of wisdom to be mined. There may be an appearance  of  randomness  to our lives but in reality there really is true order.  Coincidences  are often messages  of unfinished business  that may need to be addressed.

Several years ago, a friend put me in touch with a Speech Language Pathologist, named Samantha Elandary.  Samantha founded what is now the Parkinson Voice Project, in Dallas, Texas, formerly the Texas Voice Project.  When I had returned from Dallas almost 7 years ago, I found my voice had improved from just a few days of therapy.  Time passed,  and this year I ran into Samantha twice at 2 different Parkinson’s events.  At the second event, she told me about how her voice program had evolved and she invited me to Dallas to see and experience the power of her voice program. As one who is fluently challenged, at times and speaks publicly, I accepted her offer to improve my speech,  fluency, and loudness.

I have been accused of being hyperbolic with my words on several occasions but what I saw for others as well as myself is nothing short of miraculous. People with PD and soft or weak voices were regaining their lost voice.  How easily we discount the importance of voice, inflection,  and the self-esteem that is attached to being heard and understood.  The Parkinson Voice Project is fighting to help people with PD regain and maintain their identity and their voice.

What I saw for myself was an increase in volume, improved clarity, and a fluency that I had not seen for years.  I saw people in the Parkinson Voice Project center smile with pride as their voice came back and tears of joy from their care-partner  because now their spouse could be heard. The old saying that you don’t know what you’ve got until it’s gone is true, especially in this case and for many of us if we don’t pay close attention we won’t realize that something needs fixing. For me, I am so grateful to hear such a dramatic change in my speech. I can also speak for my wife that she is so happy not to ask me to repeat myself.

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