We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring United Cerebral Palsy’s resources to the front of The Mighty‘s wide-reaching readership. We will now  have a growing home page on The Mighty , and appear on many stories on the site, allowing us to get many more people involved with our organization.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy, and that 1 in 5 Americans live with some form of disability. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to providing comprehensive support and community for children and adults living with cerebral palsy, as well as other disabilities, and their families. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Here’s an example of the kind of stories you’ll find on The Mighty: Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

UCP Launches “Speak for Yourself,” a PCORI-Funded Project to Establish a Patient-Centered Research Network for Individuals with Disabilities

FOR IMMEDIATE RELEASE                                  Contact: Randi Moore, (202) 494-4638

Washington, D.C. (May 3, 2016) – United Cerebral Palsy (UCP) has launched Speak for Yourself, a two-year project funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award to address the various barriers to access that discourage or prevent individuals with disabilities from participating in medical research.

Speak for Yourself is a movement that will build a network of individuals with disabilities who are trained and empowered to become directly involved in medical research that improves their health outcomes.

“People with disabilities have long expressed the desire not only for more opportunities to participate in research, but for a voice in the decision-making around the ‘what’, ‘how’, and ‘why’ of disability-focused research. Speak for Yourself aims to empower people with disabilities to work alongside researchers to ensure that the future of research meets the needs of real people,” said Stephen Bennett, UCP’s President and CEO.

Speak for Yourself will include various opportunities for online engagement and access to resources on research participation. Each year of the project will culminate in a one-day convening bringing together advocates and researchers to collaborate on how to build a more dynamic relationship.

“To promote health equity among people with disabilities, we need to pursue research that is meaningful to those most affected. To do so, people with disabilities must have a say in the research process. Speak for Yourself is a part of the solution to transform science and promote patient-centered outcomes,” said Katherine McDonald, PhD, Associate Professor of Public Health at Syracuse University.

UCP believes that relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to creating a life without limits

More information about Speak for Yourself can be found at http://mylifewithoutlimits.org/speak-for-yourself/

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with a network of affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence. For more information, please visit http://ucp.org.


About The Patient-Centered Outcomes Research Institute

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

 

Time to Swim! UCP’s Interview with Dr. Deborah E. Thorpe

by O’Ryan Case, UCP’s Manager of Public Education Programs

Thorpe- Headshot- 2012

 

 

Debbie Thorpe, PT, PhD
Associate Professor
The University of North Carolina at Chapel Hill

 

 

 

Summer is underway! A short while ago, we talked about the importance of inclusive summer camps and, this month, we are highlighting the many benefits that swimming brings to individuals with a range of disabilities (well, all individuals to be exact!). 

I recently had the pleasure of speaking with Dr. Deborah E. Thorpe, a physical therapist who who is an Associate Professor at The University of North Carolina at Chapel Hill. Dr. Thorpe led Project ACT NOW (Adults with Cerebral Palsy Training to Increase Overall Wellness), which investigated the effects of aquatic exercise on fitness and participation of adults with cerebral palsy (CP). See below to check out the interview!

Interview with Dr. Deborah E. Thorpe (DT):


Thanks so much for speaking with me and sharing your expertise around aquatic exercise with our UCP audience! I’ll begin with the workout that swimming brings. I have spastic diplegic CP and, whenever, I swim, it really feels like a complete workout. Can you tell me a little more about why this is and why I feel this way?

DT: It’s because aquatic exercise is a whole-body workout. When you exercise in the water, you’re moving against resistance the entire time– and this is a lot more resistance than what is felt on land. Water applies variable resistance, so the slower you move through water, the less resistance you experience against your movements. Conversely, the faster you move through water, the more resistance you experience. When you push ten pounds worth of force through water, you’re getting ten pounds pushed against you. Every muscle group can be exercised against resistance much easier in the water than on land. Also, for individuals with muscle weakness and limited range of motion, different movements, such as abduction, can be very difficult on land. But in the water, properties like buoyancy (the upward force of the water pushing against the object that is being submerged) make these movements much easier.


You’re right. I’m able to do much more with my legs when I’m in water than when I’m on land. Can you explain water’s buoyancy a bit more?
 

DT: Water’s buoyancy affects the amount of weight bearing on your legs. When you’re in waist-deep water, your legs are only having to support 50% of your body weight. In chest-deep water, your legs are only having to support 25% of your body weight. In neck-deep water, your legs are only supporting 10% of your body weight. Moving in water is so much easier for individuals with neuromuscular challenges, such as CP. If individuals have a hard time standing, I’ll put them in chest-deep water and they can stand and many times walk with their feet flat on the bottom of the pool. Once they get stronger, we’ll move to waist-deep and then knee-level water. Then, before you know it, they’re in mid-calf water.

 

So in addition to making the movements much easier, what other kinds of benefits come with swimming and other aquatic exercises?

DT: Well, it’s a safer environment in which to try more risky movements. I can’t get all of the kids I work with to jump off a step when they’re on land. But if I ask them to jump while they’re in the water, they feel safer and safety isn’t much of an issue. I can get people to jump up and down, or stand on one leg without losing their balance, which may be very difficult on land. If they fall in the water, they will not get injured. 

I mentioned it brings a total-body workout and helps with increasing range of motion in most muscles. In chest-deep water, the hydrostatic pressure produced by the water pushes against and gives a quick stretch to your diaphragm. It works the muscles in your chest– kids with CP tend to take short breaths, which is why some have softer voices, as they’re not filling their lungs all the way up with air and have trouble pushing air out of their lungs. When water is pushing against your diaphragm and providing resistance, by breathing you’re building up its strength and increasing the ability for the lungs to expand more and, ultimately, you can take in more air; it can definitely help with breathing.

Additionally, this hydrostatic pressure pushes on organs, such as the bladder and bowels and helps these organs to better perform. What do we all do after a half hour or so of aquatic exercise? Go to the bathroom!

 

Wow, that’s a lot! Do these benefits tend to last? 

DT: Anecdotally, adults with CP and parents of children with CP have told me that they’ve seen these types of benefits last for up to 24 – 48 hours.

The hydrostatic pressure produced in the water is a natural pump. Being in water is almost like wrapping an ace bandage around your calf moderately tight. The pressure of the water pushes lactic acid (which you build up while exercising and is what makes your muscles sore) out of the muscles at a faster rate than when doing land-based exercises.

 

So just to confirm, would you say these benefits apply to individuals of all ages and with all types of disabilities?

DT: Absolutely. I’ve worked in the water with babies, as well as individuals in their 70s. And I’ve worked with individuals with CP, Down syndrome, spina bifida and more. There is no one who can’t go in the water. For someone who has a tracheostomy, more precautions need to be addressed, such as making sure water doesn’t get into the trach.  If someone has a seizure disorder, you have to make sure the seizures are controlled and monitor him or her closely.

Let me tell you about one woman with whom I have worked with in the water. She has spastic quadriplegic CP and has used a power wheelchair since she was a child. She basically has only limited movement in her hands out of water– but in neck-deep water, I have seen her running!

 

That is incredible. Another thing about swimming that I’d point out is that it’s something people of all abilities can enjoy– it’s fun! Can you talk a little bit about that? 

DT: It also brings so many psychological benefits. I put all kids, no matter what their ability level is, in the water together. It’s amazing to watch them play basketball in the pool. Water “levels the playing field” and they all have a lot of fun. So in addition to the physiological and safety advantages, there are psychological ones involved as well.

Take kids who want to play t-ball. We play in the water! With the water resisting their movements and them having to fight the currents that are created in a pool from people moving around, the core is being strengthened. So you not only get stronger, but your balance improves.

 

What kind of timetable do you see with these types of results? 

DT: Everyone is different, so it all depends on the person and their abilities. But I’ll give you an example. I worked with a twenty-one year old man with spastic diplegic CP, who was an assistant head coach for his college’s baseball team. He told me he was always tired and that he wanted to gain strength so that he could do fun things after class and baseball events (just like every other college student). His upper body was very strong but his legs were very weak and atrophied. He came into my program and we worked for 45 minutes, three days per week for ten weeks. At the end of those ten weeks, I measured his function– he gained 200% in strength in both of his legs! Also, he was able to walk around the living room for the first time without using his forearm crutches! 

I also did a study with adults, where we worked three times per week for twelve weeks. Results indicated a trend toward improving their bone-mineral density. I can’t say this was directly a result of  aquatic exercise but they were definitely increasing their strength. The ones who walked were walking further and faster– and the water seemed to be the catalyst. Unfortunately, at a six-month follow-up assessment, a majority of their assessment measures were back to their baseline. Only a few had joined a facility where they could exercise in the water.  When they were in the study, they were provided with a pool membership for the course of the study and had camaraderie during their exercise sessions and tons of support. When the study ended, those supports went away.

 

I can say that having a chance to interact and train with other individuals who have disabilities would be fun and bring a sense of comfort. It’s certainly different when I may be the only person in the water or at a gym with a disability.

DT: I understand. I’ve been researching these types of barriers. Cost is a major barrier– a pool or gym membership that costs $35 per month is tough. Transportation is a barrier. And feeling like no one at a pool or gym knows what you can and cannot do is another barrier to exercise. Let me point out that there are personal trainers out there who are American College of Sports Medicine (ACSM)- certified in working with individuals with chronic disabilities. These trainers will likely have at least some familiarity working with individuals with disabilities– so that would be something for individuals and families to consider is to check with exercise facilities to see if any of their staff has this certification.

 

All of this information is helpful. What would you tell an individual with a disability or a family member who wants to know ways to become involved with aquatic exercise  or aquatic therapy?

DT: First, I’d suggest getting a physical therapy evaluation. Get a prescription for an aquatic therapy evaluation from your primary care provider. The physical therapist will evaluate the individual on land and tell them the areas needing improvement (i.e. strengthening, flexibility, cardiorespiratory conditioning, etc). Insurance should pay for the physical therapy evaluation. After this evaluation, the therapist will then take the individual in the water and develop an aquatic exercise/therapy program for them. Note that aquatic exercise and aquatic therapy are different. You have to have a doctors prescription to get aquatic therapy but, with aquatic exercise, you can go to any pool and exercise in the water. Also, a  good resource to check out is the National Center on Health, Physical Activity and Disability (NCHPAD). There are a lot of exercise videos on its website.

 

So, as we wrap up, do you have any other closing remarks that you would like to share? 

DT: To the parents and caregivers that UCP serves, I would say get your children comfortable in the water. Parents can get very apprehensive about putting their children in the water– but consider enrolling them in swimming lessons. Remember, there are safe flotation devices out there. I would also suggest finding a physical or occupational therapist who does aquatic therapy and can do an evaluation and come up with an individualized program. Finally, remember that a big factor with swimming is its social aspect. Kids can become bored with physical therapy but aquatic exercise and swimming can happen anywhere– like we said earlier, it’s fun! I’m a huge proponent in getting involved in community-based physical activity. I want individuals of all abilities to go out and participate with their peers.

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It was such a pleasure learning more about the types of physiological, psychological and other benefits that come with aquatic exercise. Dr. Thorpe was also kind enough to share this video of someone she has worked with. 

 

If you would like to learn more about aquatic therapy, you can contact Dr. Thorpe at dthorpe@med.unc.edu or me at ocase@ucp.org.

 

 

UNITED CEREBRAL PALSY CELEBRATES FIRST WORLD CP DAY, LAUNCHES GLOBAL FITNESS CHALLENGE

FOR IMMEDIATE RELEASE

CONTACT:
Kaelan Richards: 202-973-7175, krichards@ucp.org
Alicia Kubert Smith: 202-973-7168, akubertsmith@ucp.org   

UNITED CEREBRAL PALSY CELEBRATES FIRST WORLD CP DAY, LAUNCHES GLOBAL FITNESS CHALLENGE

 

World CP Challenge to raise awareness, support for people living with CP

Washington, DC (September 4, 2012) – United Cerebral Palsy (UCP) celebrates the first annual World Cerebral Palsy Day today with the launch of the World Cerebral Palsy Challenge, an international awareness and fundraising campaign designed to provide critical funds in support of people living with cerebral palsy.

World CP Day marks the beginning of a month dedicated to making the world better for individuals with cerebral palsy. Through the “Change my World in 1 Minute” campaign, individuals are encouraged to submit videos, texts or audio files of approximately one minute with ideas about how to change the lives of people with cerebral palsy through improved mobility, independence, accessibility, communication or social connection. For the entire month of September, any one can log on and vote at: worldcpday.org for the ideas they think would make a real difference in people’s lives. An international World Cerebral Palsy Day panel will review the most popular submissions and award grants to researchers, innovators and inventors to turn selected ideas into reality.

“We are very excited to be celebrating the first World Cerebral Palsy Day, a day which will help raise awareness and support for people living with CP, as well as make a real difference in their lives. Through the “Change My World in 1 Minute” campaign, innovative ideas and products will be realized and used to improve the lives of millions of people around the world,” said Stephen Bennett, President & CEO of UCP.

Close to 50 nations across the globe are planning awareness activities for the day, a remarkable number for this inaugural years. For a complete list of international organizations participating in the day, go to worldcpday.com.

World CP Day also marks the launch of the World CP Challenge, a month-long campaign that encourages people to get active and support individuals living with cerebral palsy. Throughout September, more than 1,000 teams comprising close to 5,000 participants and organizations around the world will compete as teams to exercise and fundraise. Each team and participant will track their daily steps with a pedometer; however, they are not limited to just walking to participate. The Challenge website offer participants a list of 40 activities —including activities for people living with disabilities— that also can count toward their daily step total. As the team’s steps are entered, their progress will be tracked as they climb their own virtual mountain representing the seven tallest peaks on the globe. The funds raised will support vital services and groundbreaking research to help people with CP.

“The World CP Challenge is a great way for people around the world to step-up, get involved, and support the approximately 57 million Americans living with cerebral palsy and other disabilities, as well as the estimated 650 million individuals worldwide. By committing to just one month of activities, anyone can help to make a lasting difference for those living with and impacted by disabilities,” Bennett said. “I challenge everyone to take part and walk, step, roll or run their way to supporting people with cerebral palsy around the world.”

Cerebral palsy is a physical disability caused by an injury to the developing brain, which usually occurs before birth. It affects movement and is a lifelong condition, but its impact varies from person to person. United Cerebral Palsy works with its nearly 100 affiliates throughout the country to educate, advocate and provide services for people living with a spectrum of disabilities, such as housing, physical therapy, assistive technology training, early intervention services, individual and family support, social and recreational programs, community living, and employment assistance.   

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About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.