Sign Up: A Care Pathway for Dystonia in CP

The Cerebral Palsy Research Network (CPRN) and CP NOW invite you to join us on tonight, Wednesday, October 30, 2019 at 8:00 pm ET for a webinar with Dr. Darcy Fehlings to learn about the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) ‘Care Pathway’ for dystonia in cerebral palsy (CP).

The dystonia care pathway summarizes existing tools for the diagnosis of dystonia in CP and the latest evidence about the care and treatment for this condition. Dr. Fehlings led the team who developed this information. Dr. Fehlings also co-developed a clinical tool to identify dystonia which is called the Hypertonia Assessment Tool (HAT). Dr. Fehlings’ research has demonstrated that dystonia is far more common in CP than previously thought. 

This webinar is the second in the three-part series for Research CP Dystonia Edition. It will run for approximately 45 minutes and be followed by 30 minutes of questions and answers. Our target audience is community members experiencing dystonia in CP and clinicians and therapists that treat dystonia. Participants who listen to all three webinars will be invited to participate in developing a formal research agenda for dystonia in CP.

Community members and providers interested in participating should read the details of Research CP Dystonia Edition. Or just sign up for the webinar!

Webinar 1

Research CP Dystonia Edition Available for Viewing

Dystonia in cerebral palsy (CP) is not well understood. The Cerebral Palsy Research Network (CPRN) and its strategic partner CP NOW are sponsors of a program called Research CP, which is a collaborative group of CP community stakeholders trying to make a difference in CP research.  The latest series of webinars is called Research CP Dystonia Edition and the first webinar was last week.  It is now posted for public viewing.  The webinar presentation is 45 minutes and covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP).  More than fifty participants watched the webinar. Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the 30 live attendees who included parents of children, people with CP, clinicians and therapists.

The introductory webinar for Research CP Dystonia Edition is the first of three in a series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge.  People that attend or watch the webinar series will be invited to collaborate in an agenda setting process to determine the most important questions to be researched about dystonia in CP.  At the conclusion of the research agenda development, CPRN/CP NOW will seek to publish a paper describing the process and the results from Research CP Dystonia Edition.  In addition to broadly sharing the results of the process, CPRN will use the finalized agenda to drive its future research efforts related to dystonia in CP.

There is still time to get involved in the process!  Clinicians and community members can sign up at MyCP to participate in future webinars. The first webinar is available for viewing here.  The next webinar, entitled “A ‘Care Pathway’ for Dystonia” will be presented by Dr. Darcy Fehlings on October 30, 2019.  If you haven’t registered for the second webinar, you can do so here.  Please note that in order to participate in setting the research agenda, you must watch all three webinars prior to November 11, 2019 when the agenda setting will begin.  You don’t have to watch them live as they are recorded and can be replayed.  We hope you can participate and are excited to make progress on better understanding dystonia in relationship to CP.  With your help, we can prioritize the most important areas to study and hopefully make a difference in outcomes for people with dystonia in CP. 

Research CP Webinar, Dystonia

Research CP Dystonia Edition Starts Tomorrow

The Cerebral Palsy Research Network (CPRN) and CP NOW’s latest effort to generate a patient-centered research agenda for dystonia in cerebral palsy kicks off tomorrow, Wednesday, October 16th at 8 pm ET.  Join Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil, Community Advocate Melanie Brittingham and CPRN Chairman Paul Gross, to learn about this innovative program to help establish the most important research questions in dystonia in CP.  Register for the first webinar here.

Gross will kick-off the webinar with an overview of the Research CP process – the webinars, collaborative surveys and discussions – that will result in a list of research questions that the community finds most pressing in dystonia.  Brittingham, a board member of CP NOW and the mother of a child with dystonia in CP, will provide an overview of the community experience with dystonia.  And then Dr. Aravamuthan will lead the participants through the definition of dystonia in CP.  The webinar will be followed by a question and answer session.

Research CP Dystonia Edition is intended for people who have experienced dystonia in CP and clinician researchers who diagnose and treat the condition.  The program consists of a webinar series followed by discussions and collaboration on the most pressing research questions and a voting process involving both community members and clinicians.  The program will be conducted over several months using a series of online tools and forums to garner input and priorities from the extended community. 

Dog named Bear

Guest blog post: “Let’s get a service dog!”—or maybe not

This is a guest blog post for CP Daily Living written by parent advocate Jennifer Lyman

A while back, after the death of our beloved dog Bear, we went dog free for a while to see what it was like.  It turns out we didn’t like living in a household without a big black furry friend underfoot. We could have just gone back to the humane society, but, since our 14-year-old son has quadriplegic cerebral palsy, we thought a skilled companion dog would be better.  That way, we’d have a dog back in our lives and our son would have a companion who could potentially do so much for him. It seemed to be an obvious choice.

With some research, I found a wonderful organization that specialized in training golden retrievers and labs (our favorites!) for an array of people with disabilities. Then I started the process with an initial application and hit send. Shortly, we were approved to apply for a skilled companion dog, 16 pages, requiring an essay about our son, references from our vet, explanations into how our previous pets passed and photos of our family. Each handler would need to fill out a separate application. Before my son was born, I had conducted home studies for individuals looking to adopt or foster children: their application was much less intense! If our application was approved and if we survived the phone interview and in-person interview, then would come the one week training visit and then the two week training visit before we might be matched with a dog.

The application was very clear. It asked: What did we think a skilled companion dog could do for our son? I realized that I really didn’t know. Maybe it could calm him down if he was having anxiety, maybe it could press the buttons to open door for him (our old dog Bear could do this), maybe it could serve as a buddy and a conversation starter so that others might not be afraid to approach my son in his wheelchair. But I also realized that I had never seen my son with a dog that he was comfortable with, except Bear.  When strangers approached him on the street and would say things like “my dog loves kids and dogs are so great for disabilities,” he would be horrified at the unpredictable, wiggly, slobbery animal trying to give him a kiss. When I asked him if he wanted a dog, he said “no”, but I would think to myself, “Well, he doesn’t know what it’s like to have a dog that is so well trained and just for him.” I had never seen him with a dog like this. So I decided to call the organization and schedule a tour.

At the training facility, the tour guide—a parent of a grown son with disabilities— warned us to be prepared for a lot of work.  As facilitator, you are responsible for all keeping the dog on task, ensuring his needs are met and that the rules of the agency are always followed. The dog is not to go anywhere without you and your son. Meanwhile, my son is clearly on edge because there are dogs barking in the background and he can hear them walking around nearby. At a demonstration with a current trainee, we were impressed with all of his skills. He’d pick things up off the floor and deliver them to his handler in a variety of ways, he’d pull open doors, walk perfectly next to the wheelchair, and rest his head on his handler’s lap with just a simple command. Then she asked if my son wanted to pet the do, and he emphatically said no. We gradually convinced my son to pet one very calm dog.  It was a very sweet moment, but it certainly didn’t appear to me that it suddenly turned my son into a dog person.  He is not.

That’s when I began to get it.  The applications coordinator said something that really stuck with me: “He has to be highly motivated by dogs for this all to work.” This seems very obvious but I had never thought about it like that. Those that are a good match for service or skilled companion dogs will certainly benefit, and the organization we visited is clearly doing an amazing job in training and ensuring that these pups are matched to their perfect person. I am so thankful that, before we went too far down the road, we learned that a service dog isn’t right for our son. I’m not giving up on bringing a new pup back into our family, but now I clearly know who that pup will be for.  It just won’t be for him.


Guest blog post: "Let's get a service dog!"—or maybe not

Going Green for World CP Day

CPRN Logo ImageHere at the Cerebral Palsy Research Network (CPRN) we go green everyday! Our mission is to improve outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives.  How do we know what people with CP value most?  We involve the community in our strategy, our research planning, as co-investigators, and in setting the research agenda!  Join us for our latest effort to set a patient-centered agenda for research in dystonia in CP.  Happy World CP Day!