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Cerebral Palsy - Navigating Adult Life

condition

Media Type

Online Resource

Reviewed Date

Jun 1, 2020

Adults living with Cerebral Palsy often have difficulty finding information about navigating through life as the majority of resources published are for children. This site provides some resources for enriching your life, while living with cerebral palsy.

Body

As a person with cerebral palsy ages into adulthood, their bodies are still catching up, and each person has unique challenges with regards to pain, communication, and walking ability. There are many adaptive tools to enhance living, and resources for adults living with cerebral palsy are increasing with the technology advancements.

 

List of resources: 

AusACPDM - Australasian Academy of Cerebral Palsy and Development Medicine: Education resources to support general practictioners and patients.

American Academy for Cerebral Palsy and Developmental Medicine and fact sheets: 

 

Cerebral Palsy Foundation
has a great website complete with a video library, fact sheets, and an information on aging with your body.

MY CP MyCerebralPalsy.org

The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org (MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:

  1. the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
  2. the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
  3. Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.

 

SAILS Workfore Development Program - Lurie Children's Hospital

The SAILS Workforce Development Program places young adults in a six-week paid internship program, along with a one-week training prior to starting.
Please contact Rebecca Boudos, LCSW at 312.227.6391 or e-mail transitionteam@luriechildrens.org for more information on eligibility criteria.

 

Everyday Health - CP in Adults
Addresses frustrations and daily living with aging and cerebral palsy.

 

Fitness and Exercise

The 2018 Physical Activity Guidelines Advisory Commitee recommends

  • Adults get 2.5 - 5 hours of exercise a week.
  • Of those hours, 1.25 - 2.5 hours vigorous Intensity aerobic activity and two days of muscle toning exercises.
  • Adults with a disability are advised to follow these recommendations based on their ability and physician orders.

American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)  
Exercise for Adults with Cerebral Palsy

 

Inspirational Artists List who live with Cerebral Palsy 

Some people are able to use artistic expression as a way to share their individual spark in creative outlets such as painting, writing, theater, and dance. Jerron Herman is an exceptional display with his dance ability.

 

Recommended Reading:
Cerebral Palsy: A Complete Guide, by Dr. Freeman Miller

Under the Eye of The Clock: The LIfe Story of Christopher Nolan, personal memoir

 

Shirley Ryan Abilitylab article:
Cancer Drug Shows Promise in Treatment of Cerebral Palsy

Cerebral Palsy at Shirley Ryan Ability Lab

 

 

This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here  for further details.
© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago)
Henry B. Betts LIFE Center – (312) 238-5433

Photo by Jamie Street on Unsplash

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