Happy New Year 2022 from the CP Research Network with a black background and fireworks in the corners

Happy New Year from the CP Research Network

At the Cerebral Palsy Research Network, we have a lot to be thankful for.  You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022.  With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow).  Thank you to all who contributed and helped to spread the word!

2021 in Review

Last year was transformative in numerous ways for the CP Research Network.  We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:

 

Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now.  A few highlights include:

What’s new for 2022?

We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.

There are lots of ways to stay engaged with us.

Please consider one of these:

All the best to you and the entire CP community for 2022!

 

 

 

 

Cerebral Palsy Fitness program gets sponsorship from Neurocrine Biosciences

Neurocrine Biosciences Sponsors Cerebral Palsy Fitness

Neurocrine Biosciences logo

Neurocrine Biosciences is the exclusive sponsor of our MyCP Fitness program with Staying Driven.

The Cerebral Palsy Research Network announced that Neurocrine Biosciences, a pharmaceutical manufacturer based in Southern California, will be sponsoring the network’s MyCP Fitness Program hosted by Staying Driven. The CP Research Network launched its MyCP Fitness program in June 2021 to enable members of the MyCP community to have access to quality adaptive fitness from the safety and comfort of their own home. The network chose adaptive fitness coach Steph “the Hammer” Roach and her crew of adaptive fitness trainers to provide these free services to our community. The Neurocrine sponsorship enables us to continue the program through 2022.

While physical activity is important for everyone’s health, it has been shown to be even more important for people with disabilities like CP who are at greater risk for cardiometabolic disease.[ref] The challenge is that most gyms or virtual fitness programs don’t have appropriate accommodations or adaptations for people with CP. Staying Driven, founded by Steph Roach, a former CrossFit trainer who has CP, focuses on fitness for people with disabilities. Our program was an attractive fit for Neurocrine which has a philosophy is to holistically support and be good partners to the patient community they hope to serve.

The Neurocrine Biosciences sponsorship not only extends the length of the program, but enables the CP Research Network to reach more community members. Teens and adults with CP who are interested in participating in the MyCP Fitness program can sign up for free on our Cerebral Palsy Fitness page.

A scene from Hawaii with two palm trees standing in a lush green field with the ocean beyond and a perfect rainbow behind them.

Caregiver Mental Health: The Importance of You

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the things which you think you cannot do.” — Eleanor Roosevelt

Caregivers often put their entire heart and soul into the care they give others. For most being a caregiver was never a choice, more so a job taken on with determination and courage. Taking care of any child requires time, patience, understanding, love, and an immense amount work. When adding a child with a disability into the equation these requirements are greater. As a caregiver, it is important to take time for self-care. When caring for others it is important that you also take care of yourself.

A lush, living wall of greenery with neon sign that says "breathe" in script with a pale pink written at a 45 degree angle

Focusing on your breathing, an essential step in meditation, is a great way to calm your mind.

Parents/Caregivers face uncertainty and anxiety particularly as they adjust to their new caregiving roles. Arranging healthcare providers, keeping up with day-to-day needs, and making major medical decisions are just a few areas of concern ]caregivers have. All these tasks, and more, require a great deal of time and patience. Unfortunately, many caregivers get lost in the process.

Some parents find the needs of the child so overwhelming that they neglect their own health, either because it seems insignificant or because it is too costly to eat well and get proper rest and respite from caregiving responsibilities.
Freeman Miller, M.D.
Pediatric Orthopedic Surgeon

Therefore, it is so important as a caregiver to identify symptoms of ongoing stress that may lead to anxiety or depression. Taking time for self-care and seeking professional guidance and counseling can mitigate and prevent caregiver burnout.

What do anxiety symptoms look like for caregivers? (ADAA, 2020)

  • Constant fearfulness, worry or impending doom and excessive sweating
  • Trouble eating or eating too much
  • Shortness of breath that keeps coming back
  • Sleep problems and irritability
  • Heart racing or beating hard in the chest

What do depression symptoms look like for caregivers? (ADAA, 2020) Depression for anyone can vary in symptoms. When looking at symptoms directly related to caregivers here are some things to consider:

  • Avoiding pleasurable or meaningful activities because you feel guilty about taking time off from caretaking
  • Repetitive nightmares or intrusive thoughts about the patient/loved one, including the diagnosis, treatments, or future prognosis
  • Inability to sleep (with falling asleep or sleeping too much)
  • Feelings of exhaustion, severe tiredness
  • Feelings of tension and chronic irritability
  • Inability to concentrate or remember details
  • Anxiety attacks about not properly following the medical regimen
  • Inability to talk to others about your experience as a caretaker
  • Anticipatory anxiety about future treatments for the patient/loved one
  • Thoughts of suicide because you feel so overwhelmed, worthless, or inadequate

A lush, living wall of greenery with neon sign that says "and breathe" in script with a pale pink written at a 45 degree angle

Focusing on breath going in and out can help bring about a more calm state.


Practical self-care tips:

Self-care encompasses many different things-some that many may have not considered. It can be a nice bath, or a hot shower, a walk around the neighborhood alone, or even a glass of their favorite beverage. If the activity is done with intention and is enjoyable it can be a form of self-care. Eating well and getting good sleep whenever possible can help prevent periods of burnout and severe drops in mood (Marilynn, 2018).

Caregivers are hard on themselves; they have a huge job to do. Sometimes the inner voice that whispers to always ‘do better’ needs to be muted. The self-critical voice has to be stopped for a louder self-compassionate one to emerge (Marlynn, 2018).

Another thing great for relaxation and self-care practices are breathing exercises (Marlynn, 2018). Deep breathing techniques done for only 5-10 minutes a day can help recenter the mind. Accompany these exercises with positive affirmations and conscious instruction to get the best results.

Affirmations can start with ‘I am’ and include statements like:

I am enough. I am worthy. I am a good caregiver. I am a great parent. I am capable.

Instructions that you speak aloud to yourself can look like:

I breathe in calm and relaxing energy.

I pause to let the quite energy to relax my body.

I breathe out and release any anxious or tense energy.

*Breathing exercises should never be painful or uncomfortable. Remember to always only do what is comfortable for you and modify exercises it to better suit your individual needs.

Other relaxation exercises can include yoga, tai chi, guided meditations, hypnosis, and progressive muscle relaxation. We live in a world where the internet offers plentiful resources where we can find a lot of information. Use the internet to help you find local programming or relaxation tools/apps or, seek the support of a licensed counselor/physician

Social support is also another important part of self-care. Caregivers do not have to take on everything alone; try and connect with people who are willing to help and support you. Take time to spend a day with friends. Join a support group whether it be online or through a community program. The Cerebral Palsy Research Network has an online forum with groups spanning many different topics.

It is important to realize when you or someone you know needs help outside of family support. Talk to a healthcare provider if you are struggling. Asking for help is okay! Remember to take care of others properly you must take care of yourself!

Friendship Line: 800-971-0016

National Suicide Prevention Lifeline: 800-273-8255 (TALK)

SAMHSA: 800-662-4357 (HELP)

Samaritans: 877-870-4673 (HOPE) (call or text)

Crisis Text Line: Text “HOME” to 741741

Veterans Crisis Line: 800-273-8255 (press 1) or Text 838255

References

Caregiver mental Health: Anxiety and Depression Association of America, ADAA. Caregiver Mental Health | Anxiety and Depression Association of America, ADAA. (n.d.). https://adaa.org/find-help/by-demographics/caregivers.

Marlynn Wei, M. D. (2018, October 17). Self-care for the caregiver. Harvard Health. https://www.health.harvard.edu/blog/self-care-for-the-caregiver-2018101715003.

Miller, F., & Bachrach, S. J. (2017). Cerebral palsy: a complete guide for caregiving (3rd ed.). Johns Hopkins University Press.

Stiles, K. (2021, April 23). Depression hotline numbers. Psych Central. https://psychcentral.com/depression/depression-hotline-numbers#hotline-numbers.

A small preview image of the Staying Driven logo linking to blog post ‘CP Research Network Launches New Fitness Program’.

CP Research Network Launches New Fitness Program

We are excited to announce a new wellbeing program in partnership with Staying Driven and Steph “the Hammer” Roach! Beginning Tuesday, June 8th at 7 pm ET, Staying Driven coaches will offer virtual adaptive fitness classes exclusively to registered MyCP community members!

Steph 'The Hammer' Roach, Adaptive Fitness CoachStaying Driven - Virtual Adaptive FitnessStaying Driven is a virtual adaptive fitness program founded by Stephanie “the Hammer” Roach. An adult with CP and a former CrossFit trainer and gym owner, Steph shifted her business during the pandemic to virtual classes for people with disabilities. She and her staff of adaptive fitness trainers offer multiple classes a week for people with disabilities.

The CP Research Network has arranged for MyCP members to be able to attend up to two classes per week, free of charge!

To be eligible, you need to complete these registration requirements:

  1. Be a current member of MyCP (joining is free). Parents of teens under 18 need to be the active member.
  2. Participate in at least one MyCP survey (a list of available surveys can be seen here).
  3. Sign up for a free Zoom account for class registration.
  4. Read and sign the waiver for Staying Driven and the CP Research Network on the sign-up page

Are you ready? Go sign up!

How it works:  MyCP members who follow the steps above will receive an email from the CP Research Network with the link to the Zoom Registration for the fitness class with Staying Driven. Steph, or one of her other coaches, will run the class. The participant uses the link to register for each class.

When? Saturdays at noon ET/9 am PT or Tuesdays at 7 pm ET/4 pm PT

What should you bring? A water bottle, a hand towel and a positive attitude.

What about resistance or weights?  Classes are adapted for people of all ages and abilities. Steph will encourage you to gather items from around your house or apartment to participate. If you have a personal care attendant or a caregiver that wants to be involved, they are welcome to attend to assist.

What if I cannot make these times or I want to work out more often? The MyCP Fitness program only supports these two days and times. Staying Driven has monthly memberships that will allow you access to all of the regular programming if you are interested.

Do I need a note from my doctor? A doctor’s approval is up to your discretion. Think of it as joining a gym — the gym doesn’t require a note from the doctor, but the waiver makes clear that you are responsible for making the appropriate health choices for yourself.

Join us for this new and exciting program made possible through your generous donations to the CP Research Network!

A small preview image of the CP Research Network’s website linking to blog post ‘A Labor of Love: Our New Website’.

A Labor of Love: Our New Website

A screen capture of the CP Research Network’s website as it displays on a mobile device

A screen capture of the CP Research Network’s website as it displays on a mobile device

The Cerebral Palsy Research Network will launch its new website – combining all four of its web properties – this Monday, May 24! Our extended community will benefit from this single rich repository of information, resources, research and collaborative tools. In order to learn how to maximize the benefits of our new site, it will be the subject of our next MyCP Webinar on May 26 at 8 pm ET.

Founders Paul Gross and Michele Shusterman will provide background information on the creation of merged site, talk about the design principles and walk attendees through the new user experience, including plans for future enhancements to MyCP.

In January we announced the merger of CP NOW, including its toolkit, wellbeing resources and CP Daily Living blog, with CPRN and its MyCP community engagement site. Carefully sorting how to organize our four web properties was a key step to bringing together CP NOW and the CP Research Network. The new website, found at https://cprn.org, focuses on the four cornerstones of our mission:

  • Engaging the community in research and sharing their lived experiences;
  • Research and implementation of evidence-based health care for cerebral palsy;
  • Educating community members of all ages with content reviewed by experts in CP care;
  • Wellbeing programs for optimizing life-long health.

During this webinar we will demonstrate how to get the most value out of the network and MyCP, including how you can contribute to improving outcomes for people with CP.

Please join us! You can register here: https://cprn.org/mycp-webinar-series/

A screen capture of the CP Research Network's new website main page

Here’s a sneak peek at our new website!

Thanks to our merger with CP NOW and new research studies already off the ground, it’s been an exciting year so far for the CP Research Network. So, what’s next? Our new website!   

 Since our January merger, our team has been busy integrating four websites into one to create a new online home – cprn.org – a place where we will bring together our community, research efforts, education, and wellbeing programs.   

Here’s a sneak peek of what’s to come!   

To make things easier to navigate, our one platform, CPRN.org, will feature the four cornerstones of the combined organization:  

1) Community  
Join a committed group of community members on the MyCP platform at CPRN.org. All are welcome, including adults with CP, parents, and caregivers, clinicians, researchers, and advocates shaping impactful research to improve the lives of people with CP.  

2) Research  
The Cerebral Palsy Research pages of our soon-to-be-released site will fill you in on our active studies and highlight opportunities to participate in ongoing research to improve healthcare outcomes for people with CP.  

3) Education  
Please take advantage of our educational resources and programs to help navigate CP from diagnosis to therapies, treatments, and interventions to maintaining mental and physical health and transitioning to life as an adult with CP. You’ll find many toolkits, guides, and resources all ready to download on our education webpages.   

4) Health and wellbeing  
Log on for programs to maintain and improve physical health and wellbeing. We are working with our trusted partners to implement regular opportunities for community members to participate in healthy activities in their communities.  

Excited? We are too! We’ll reveal our launch date soon, but for now, please keep swinging by cpdailyliving.com, cpnowfoundation.org, cprn.org, and mycp.org for everything you need to know about the CP community.    

The National Center on Health, Physical Activity and Disability logo and the MENTOR program logo linking to blog post.

Want to try a home wellbeing program?

We Have Ten Free Spots Available For A New Wellbeing Program!  Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle.

As we encourage our community to strive for the best possible outcomes we are delighted to partner with the National Center on Health, Physical Activity and Disability (NCHPAD) to bring its MENTOR program to the cerebral palsy community. 

MENTOR, which stands for Mindfulness, Exercise and Nutrition To Optimize Recovery, is a holistic approach is aimed at restoring, improving, and protecting health across the lifespan.

We are able to offer 10 members of CP Community the opportunity to participate in this free eight-week program throughout the months of April and May 2021.  Participants must be members of the MyCP community and 18 years or older.

During the pandemic, NCHPAD has pivoted from an onsite program for health and wellness, to virtual coaching for exercise, mindfulness and nutrition.  The MENTOR program combines adapted exercise, sport and recreation activities with practical healthy eating cooking classes and mindfulness-based stress management techniques to reduce mental health issues such as anxiety and fear.

“Our health coaches will work closely with the CP Research Network and community members to establish the most beneficial exercise, mindfulness and nutrition programs for people with CP,” says James Rimmer, PhD, Director of NCHPAD. “We are excited to partner on this pilot program with the CP Research Network.”

Participants will be provided with equipment to use at home which they will be able to keep at the end of the training. 

The program with be monitored by CP Research Network’s Mary Gannotti, PT, PhD, a professor of physical therapy at the University of Hartford and member of the network’s steering committee.

Interested members of the cerebral palsy community should send an email to mentor@cprn.org