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New Horizons Virtual Town Hall 10 - Demystifying Dyskinesia!
Do you or your child have movements that are difficult to control? Is your mobility and function impacted by abnormal movements or do these movements cause pain? If so, you or your child may have Dyskinesia. If you want to learn more, including how it is treated, don't miss this educational Town Hall with experts Dr. Heather Riordan, from Kennedy Krieger Institute, and Dr. Michael Kruer, from Phoenix Children's.
Demystifying Dyskinesia with Dr. Heather Riordan and Dr. Michael Kruer on March 27th at 7:00 PM ET
Mixed Types
Mixed types of CP refer to symptoms that don’t correspond to any single type of CP but are a mix of types. For example, a child with mixed CP may have some muscles that are too tight and others that are too relaxed.
Get the Facts: What Are Mixed types
Dystonia Care Pathway
The Dystonia Care Pathway was created in 2016 based on best available evidence and is currently under revision. This link will be updated accordingly. The goal of the these Care Pathways is to help Health Care Professionals understand the research evidence on the topic so that they can make clinical decisions for the care of the individual.
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Dyskinetic Cerebral Palsy
People who have dyskinetic cerebral palsy experience involuntary movements that are difficult to control. These movements can be slow, twisting and writhing, or rapid and jerky, and can impact movement in the hands, arms, feet, legs and even the face or tongue.
Get the Facts: What is Dyskinesia
New Horizons Virtual Town Hall 9 - Do You Have Movements That Are Difficult To Control? Maybe It's Dyskinesia.
Do you or your child have movements that are difficult to control? Is your mobility and function impacted by abnormal movements and cause pain? If so, you or your child may have Dyskinesia. If you want to learn more, including how it is treated, please join us on for a new educational Town Hall with experts Dr. Susan Biffl, from Rady Children's Hospital, and Dr. Mark Gormley, from Gillette Children's.
Do you have movements that are difficult to control? Maybe it'd dyskinesia. With an image of Dr. Susan Biffl wearing a black shirt and Dr. Mark Gormley wearing a blue shirt and tie. Over the logo New Horizons Virtual Town Hall Series
How important is it to control drooling and other frequently asked questions
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.
Photo of a young man in a blue shirt, wearing dark sunglasses with yellow rims reclining in a wheelchair with a batman printed neck pillow around his neck. He is in a hospital room and has a feeding tube attached to the wheelchair.
Finding Your Passion
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
A screenshot from the YouTube video, "Finding your Passion"
The Complexity of Acceptance
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
Representation of a person in a wheelchair using assistive technology to communicate with a group of people around them.
Accessibility Features
Many of our products today have accessibility supports in them to the extent where we don't have to purchase anything else. It's already in there. Your phone, your tablet, your smart home devices. If you're going to look for these features on your devices, you can start in your settings. There should be something in there that says accessibility. Go in there, see what's available. The manufacturers have done a really nice job of describing these features right within the settings to give you a sense of what they're going to do.
An image of a smart phone and tablet on a blue background