Grip Study Results: MyCP Webinar

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

On Monday, June 20 at 8 pm ET, Ed Hurvitz, MD, will present the preliminary findings of his study of grip strength as biomarker for body composition in cerebral palsy (CP). This presentation will appeal to all adults with CP and parents/caregivers alike because of the importance of understanding the role of body composition to lifelong health in CP and risks it may present to members of our community. Dr. Hurvitz is the chair of Physical Medicine and Rehabilitation at the University of Michigan and a leading researcher into challenges that people with CP face as they age.

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz will present the findings from his pilot study on Grip Strength

Dr. Hurvitz was the subject of last week’s CP Stories blog post that spotlights members of the extended CP community for their role in championing research either as a passionate adult with CP or caregiver or as a clinician/researcher committed to improving health outcomes for people with CP. He leads a group of researchers at the University of Michigan that study a number of health and fitness related outcomes for adults with CP. He is also a member of the CP Research Steering Committee and chairs its Adult Study Group.

The Grip Study pilot received funding from the Foundation of Physical Medicine and Rehabilitation in October 2020. In Monday’s MyCP webinar, Dr. Hurvitz will present that rationale for the study, the findings from the pilot study conducted at the University of Michigan and his plans to expand the study within the CP Research Network to validate its findings in a multi-center context. The presentation will be followed by an open Q&A. People interested in watching the webinar can sign-up on the MyCP Webinar Series page to receive the webinar link. If you have registered for the MyCP webinar series, there is no need to register again. The link will be emailed to you prior to the start of the webinar. Join us!

A middle aged woman with spastic quadriplegia smiles with blue eyes, strawberry blond hair and a black sweater.

CP Stories: Susan Picerno

Susan Picerno, a woman in her middle age with spastic quadriplegia, has led a few different professional lives. She has thrived in all of them. But the beginning of her career entailed the hiccups that driven, ambitious people with cerebral palsy come to expect. After graduating summa cum laude with a bachelor’s degree in social work, she decided to continue onto graduate school, obtaining a master’s in social work from the prestigious University of Michigan. Despite a graduate degree from what was the best social work program in the country, Susan recalls interviewing for twenty-two different positions before receiving an offer. For one interview, Susan recalled walking in with her crutches and being met with incredulity: “The director was so flabbergasted that I was disabled that he just stared at me, speechless. He had two directors with him, and they had to conduct the interview. He didn’t say a word the entire time,” said Susan.
She finally landed a part-time role with United Cerebral Palsy in Buffalo, New York, volunteering at a nearby center for independent living at the same time. From her volunteering, she became a board member, then an employee, and eventually, Director of Services. This was in the late ‘80s, not long before the passage of the Americans with Disabilities Act of 1990. The independent living movement was still relatively new at the time, and so Susan felt like her and colleagues at other, nearby centers for independent living were part of a movement that was growing and changing in real-time.

After her time at the center for independent living, Susan transitioned back into social work management for a while, pivoting again into grant writing for a time. At age 41, she shifted again, this time moving to D.C. to dedicate herself exclusively to federal disability policy. Susan had been working on disability issues for most of her career, but tackling the problem head-on at the federal level felt both meaningful and fulfilling.

But as Susan continued to advance and take on new challenges in her professional life, she could feel her spastic quadriplegia getting the best of her. She started developing secondary health issues common for people with cerebral palsy: obesity, type II diabetes, and hypertension. “I tried to exercise but I found physical therapy to be unsupportive,” Susan said. “I was supposed to exercise at home on my own, without the ability to stretch my own muscles and no adaptive exercise equipment or support from other people with disabilities. Why do physical therapists think that this situation will result in success?”

This is to say that for people with cerebral palsy who want to develop an exercise routine, the barriers to entry can be quite high. Pair these logistical difficulties with her harrowing experiences as a child in physical therapy—she describes being worked so hard by her abusive physical therapist that her lungs collapsed multiple times—and it’s clear that developing a regimen can present not only physical difficulties, but emotional ones. “Looking back [at my time in PT], I wonder: couldn’t they have put me in elbow pads, kneepads, etc. so that I didn’t injure myself?”

Despite these early experiences, Susan realized she was at a crossroads. Knowing what needed to be done but not sure how to make it work, Susan turned to the Lakeshore Foundation’s MENTOR program, which she was introduced to through her participation in the CP Research Network. The MENTOR program, which the CP Research Network is responsible for promoting to the CP community, helps develop wellness activities that participants can practice at home. Susan had a rocky start to the program—it was hard not to be discouraged about exercise, given her past with it—but eventually, the program became less about past struggles and more about self-improvement. Likewise, the ability to connect with other CP Research Network members who’d faced similar challenges was immensely rewarding. “These folks will always be my friends,” said Susan. She has since gone on to participate in another activity organized by the MENTOR creators, called the M2M study, which was a free exercise program tailored to people with disabilities.

Exercise was once a source of anxiety and disappointment for Susan, but now it’s a central part of her life. She consistently works out through her local adaptive fitness program, DPI Adaptive Fitness, which offers both in-person and virtual programming. One of the joys of virtual programming is the ability to participate in workout sessions that are “based” anywhere: one of Susan’s favorites is through the Bay Area Outreach and Recreation Program (BORP), which is based in San Francisco. “I work out about six hours a week now, and that includes boxing class, weight training, cardio. All kinds of activities.”

Susan recently retired from nearly two decades of service for the federal government, almost all of which were spent working for the U.S. Department of Labor’s Office of Disability Employment Policy. But in more ways than one, she continues to work to advance the causes of people with cerebral palsy. Advances in the fields of genetics and neurology represent possible breakthroughs for disability communities, but if used unwisely, these same technologies could greatly reduce the diverse ways in which human brains function (also known as “neurodiversity”). Thanks in part to the connections she has made through the CP Research Network, Susan has continued to organize and educate about this topic, engaging with both activists and scientists alike: “As people with cerebral palsy, we need to step forward and speak decisively for our own community,” Susan said. “And we need to educate parents, medical professionals, and the general public about our disabilities.” Likewise, she also recently started Little Tiger Productions, a platform that seeks to amplify creative work by and about people with disabilities. “There are so few stories that are written with disabled people in mind. Characters that do have disabilities often exist to make a point,” she said. Tiger Talk, a Substack newsletter dedicated to just this topic, is set to publish soon.

Dr. Rimmer, with rimless glasses, in a brown coat, white shirt and red tie with Dr. Peterson in a dark blazer and blue shirt.

Webinar on Wellness for Adults with CP

A white placed holder with 'wellness' written across it for the Webinar on Wellness for Adults with CP. The Cerebral Palsy Research Network will offer an informational webinar on wellness for adults with CP on February 23 at 5 pm ET. Earlier in February, we announced that we had partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to offer a free eight-week virtual course on mindfulness, exercise and nutrition (MENTOR) for people with CP and other disabilities. The webinar will feature NCHPAD Director James Rimmer, PhD and University of Michigan CP researcher Mark Peterson, PhD, discussing the benefits of exercise, mindfulness and nutrition. Several past participants from our pilot of MENTOR in April 2021 will join the webinar to answer questions as well.

“We are excited to share the details of our MENTOR program with members of the CP community,” said Dr. Rimmer. “Past participants recruited by the CP Research Network have helped us shape our wellness program for the CP community.”

Community members interested in learning more about MENTOR can register for the webinar on the MyCP Webinar Series page. If you are interested and cannot attend, you can register to receive an email notification when the webinar is completed and the recording is posted. Please join us.

If you already know about MENTOR and want to sign up, join MyCP or visit your profile and select “sign up for MENTOR”. You will receive an email with an invitation to the program.

Three photos show a woman in a wheelchair lifting weights, a nutritious meal and a peaceful day the beach

Free Mindfulness, Exercise, and Nutrition Course

A cutting board and knife are laid out with healthy ingredients and a fry pan.

One of the core curriculum of MENTOR is nutrition which is of greater importance for people with cerebral palsy for their daily and long term health.

The Cerebral Palsy Research Network has partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to provide free virtual training classes on mindfulness, exercise and nutrition (MENTOR). NCHPAD is funded through a grant from the Centers for Disease Control to promote opportunities that are crucial to the health of people with a physical disability. The CP Research Network piloted the MENTOR program in April 2021 to provide feedback on the program for people with cerebral palsy (CP). NCHPAD was recently funded for the next five years and chose the CP Research Network as their partner for the CP community.

The MENTOR program is held over eight weeks for one hour a day. Classes meet virtually and have instructors from different disciplines to teach mindfulness, nutritional health and adaptive exercise. Some exercise equipment is provided free of charge. The classes offer optional add-on private coaching to tailor the content for the individual participating. The next class for people with CP will begin in April.

An informational webinar is being planned for February 23 at 4 pm ET with NCHPAD chief executive Dr. James Rimmer and past participants from the CP community. Adults with CP that are interested in learning more should visit our Cerebral Palsy Fitness page or send an email to mentor@cprn.org. Go to our MyCP webinar series page to sign up for the informational webinar.

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.