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Living with cerebral palsy

Both children and adults with cerebral palsy can live active and fulfilling lives by utilizing different types of therapies, assistive devices, and more.

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Embracing life with CP

Cerebral palsy is a movement disorder that can affect many aspects of daily life.

Fortunately, CP is not thought to impact life expectancy. Adults with CP have a life expectancy comparable to that of the general population.

While a cerebral palsy diagnosis may come as a surprise to parents, this condition can be managed with proper treatment and continued care.

Physical therapy, occupational therapy, and speech therapy are just a few options available to help improve CP symptoms. Mobility aids and assistive devices can also be used to increase independence.

Steps toward embracing life with cerebral palsy are centered on acceptance, optimism and parental support.

There are a few aspects of daily life that can present some added challenges for individuals with cerebral palsy.

These areas include:

  • Physical fitness and exercise
  • Nutrition
  • Social and romantic relationships
  • Assisted or independent living

There are many ways to effectively manage the symptoms of cerebral palsy that would allow for a healthy, happy, and fulfilling life. Utilizing various types of therapy, home health care, assistive devices and more can help improve life for those affected by CP.

Physical fitness and CP

Staying active and maintaining a fitness routine are important aspects of adulthood. For people with cerebral palsy, there are many ways that exercise can improve mobility limitations, movement, and overall health.

Some of the most common symptoms associated with CP include a lack of coordination, voluntary movements and muscle tone. Similar to physical therapy, exercise can be used to help improve these symptoms.

According to the American College of Sports Medicine, adults should get at least 150 minutes of exercise and muscle strengthening a week.

Some ways that physical fitness can benefit people with CP include:

  • Increased strength, coordination and overall mobility
  • Reducing the chances of developing any secondary conditions, such as diabetes or high blood pressure
  • Enhanced mental and emotional state
  • Improving cardiovascular health and lung efficiency
  • Maintaining a healthy weight and BMI
  • Becoming more involved in your community by joining a fitness group or gym

While many of us are aware of the positive results associated with maintaining physical fitness, the hard part can be knowing how exactly to get started. Getting involved with a fitness routine is best done gradually – usually over a period of weeks, months or even years. This will allow you to avoid any injuries or over exhaustion.

Tips for working out with CP

There are so many different ways to incorporate fitness into your daily routine. Options such as yoga, Pilates and Barre classes offer a less intense workout. These options may be best for those with severe types of CP.

Other fitness options include weight lifting, swimming, hiking and biking. These exercises may be better suited for someone with mild CP who is looking to improve certain muscles or parts of the body.

Some tips to starting your fitness routine on the right foot:

1. Consult with your doctor.

Before beginning any type of exercise program, it is essential to discuss your plan with your doctor, who will be able to recommend a routine that works for your individual needs and current physical state. However, you want a routine that doesn’t push you past your limit. Your doctor will be able to make sure you're sticking to safe and healthy exercises.

2. Find a fitness routine that works for you.

Exercise can be a very personal thing. While some enjoy running on a treadmill or lifting weights at the gym, others may feel their best after following along with a Pilates DVD in their living room. The most important part of your fitness routine is that it is tailored to your individual body type, mobility limitations and exercise objectives.

3. Set realistic goals.

One of the fastest ways to become frustrated with a workout routine is by setting unrealistic expectations. Try discussing your fitness goals with your doctor or physical therapist. These professionals will be able to recommend a set of goals that are both achievable and effective.

4. Start slow.

Physical fitness is a journey, and there is no need to push yourself beyond your limits – especially in the beginning. Easing your way into your workout routine will allow you to have a clear idea of where you started and what you are capable of.

Many people with CP have some hesitations surrounding physical fitness and exercises. However, the benefits of working out far surpass the risks. Not only will it allow for improved physical health, but also for improved mental health. For more fitness inspiration, head over to our blog on the benefits of exercising with CP.

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Nutrition and CP

Many people with cerebral palsy experience issues related to feeding, nutrition and digestive health. This is due to the way that CP can affect various groups of muscles and nerves – including the muscles in the face.

Common secondary conditions reported in people with cerebral palsy include:

  • Oral-motor dysfunction. 86% of people with CP experience issues controlling lip, tongue and jaw muscles
  • Gastroesophageal reflux. 77% of people with CP have gastroesophageal reflux disease (GERD)
  • Chronic constipation. 74% of people with CP experience chronic constipation
  • Swallowing disorders. 60% of people with CP have a swallowing disorder (dysphagia)
  • Abdominal pain. 32% of people with CP experience pain between the chest and pelvic regions

Children with any of the above conditions are at risk of being underweight or malnourished. It is fundamental that parents and caregivers ensure their child is receiving the nutrients and proteins they need to thrive.

Improving nutritional health

Specialized diets and feeding techniques can be used to boost nutrition and digestive health. Implementing a diet rich in nutrients, calcium and protein will help reduce the risk of developing any secondary conditions, such as oral-motor dysfunction.

When treating poor nutritional health or preventing future complications, parents should seek out the help of an array of doctors and specialists. This includes:

  • Dieticians
  • Feeding Therapists
  • Pediatric Dentists
  • Neurologists
  • Radiologists

These medical professionals will be able to assess your child’s dietary intake and create a new feeding plan based on areas needing improvement.

Social and intimate relationships

For those living with cerebral palsy, creating and maintaining relationships can be a challenge. There are many reasons that people with CP may struggle to form relationships. This includes things like self-esteem, developmental delays and social anxiety.

In a study conducted in 2008 from the Foundation of Rehabilitation Information, researchers hoped to gain a clearer understanding about the social, intimate and sexual relationships of adolescents with CP. The study involved 103 people between the ages of 16 and 20 years old. In order to assess these relationships, researchers used structured interviews and questionnaires.

Researchers found that while young adults with CP were typically able to form social relationships, they often struggled to develop intimate relationships. 98% of the young adults participated in one or more recreational activity involving social groups, while 25% reported experience or interest in pursuing intimate relationships.

Improving relationships for people with CP

There are a number of things that can contribute to a lack of intimate relationships among young adults diagnosed with CP. Coexisting conditions, such as speech or intellectual disorders, may impact a person’s ability to communicate effectively. Self confidence can also play an important role in both social and intimate relationships.

Relationships among adults with CP are impossible to generalize, as it would be for those who don’t have a movement disorder. There are many factors that would impact one’s ability to form relationships — including the severity of CP, coexisting conditions, parental support, and more.

One way that people with CP can improve their relationships would be focusing on early socialization. Parents should try to familiarize their child with concepts like sharing, waiting their turn, and using their manners from a young age.

Other ways that parents can encourage socialization include:

  • Buddy programs
  • Play therapy
  • Support groups
  • Boys and girls clubs
  • Summer camps
  • After school programs
  • Activities offered at your local library, church, community center etc.

Assisted or independent living

Parents may be wondering what type of living situation is best for a child who is beginning to transition into adulthood. Housing options for individuals with CP range from 24-hour assisted home care to independent apartments in assisted communities.

Options for assisted and independent living facilities include:

  • Care homes with around the clock medical attention
  • Group care homes offering on-site therapy and treatment
  • Individual apartments within assisted communities
  • Housing offered through CP support groups
  • Residing within the family home

The decision between assisted living and independent housing is mostly dependent on the severity of cerebral palsy and one’s ability to complete everyday tasks independently. When seeking out housing options, it’s important to research what is offered through local support groups, government organizations, care homes and more.

Welcoming life with CP

If you are a parent of a child who was recently diagnosed with cerebral palsy, you may be experiencing a sense of worry when thinking about your child's future. This is a completely understandable reaction — however, it’s incredibly important for your child that parents aim to reach a point of acceptance.

By welcoming life with CP and learning ways to best cope with this diagnosis, both parents and their child will be able to move forward with confidence.

If you're looking for additional support options to help improve daily life with CP, try downloading our free Cerebral Palsy Guide. This guide features over 12 pages of information on how to embrace a life with cerebral palsy. Click here to download your free Cerebral Palsy Guide.

Cerebral Palsy Guide was founded upon the goal of educating families about cerebral palsy, raising awareness, and providing support for children, parents, and caregivers affected by the condition. Our easy-to-use website offers simple, straightforward information that provides families with medical and legal solutions. We are devoted to helping parents and children access the tools they need to live a life full of happiness

Sources
  1. Palmer FB, Hoon AH (2011). Cerebral palsy. In M Augustyn et al., eds., The Zuckerman Parker Handbook of Developmental and Behavioral Pediatrics for Primary Care, 3rd ed., pp. 164-171. Philadelphia: Lippincott Williams and Wilkins.
  2. NCHPAD (2015). Exercise Programming for Clients with Cerebral Palsy. Retrieved on November 2, 2016, from: http://www.nchpad.org/869/4965/Exercise~Programming~for~Clients~with~Cerebral~Palsy.
  3. Kids Health (2016). Dietary Needs for Kids With Cerebral Palsy. Retrieved on November 2, 2016, from: http://kidshealth.org/en/parents/diet-cerebral-palsy.html#
  4. EJCN (2013). Nutritional management of children with cerebral palsy. Retrieved on November 2, 2016, from: http://www.nature.com/ejcn/journal/v67/n2s/full/ejcn2013225a.html
  5. NCBI (2008). Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age-mates. Retrieved on November 2, 2016, from: https://www.ncbi.nlm.nih.gov/pubmed/18509575
  6. UCP (2015). Housing Help. Retrieved on November 2, 2016, from: http://ucp.org/resources/housing/
  7. Cerebral Palsy World (2016). Independent Living. Retrieved on November 2, 2016, from: http://www.cerebralpalsyworld.com/independent_living.aspx
  8. Jason's Connection (2014). 7 Different Housing Options for Disabilities in NYC. Retrieved on November 2, 2016, from: http://www.jasonsconnection.org/different-housing-options-disabilities-nyc/