Adults with cerebral palsy
Raising a child with any disability requires compassion and understanding. As your child begins to transition into adulthood, there are likely to be many obstacles, as well as reasons to celebrate.
While most of the resources on cerebral palsy focus on children and toddlerhood, there are countless adults with CP who go on to live a full life.
Parents and caregivers will begin to notice some important changes taking place as their child matures into adulthood. Children may start to show more pronounced developmental delays or mental health conditions. Contrastingly, adulthood may mark the first time that an individual was able to walk on their own or achieve a long-awaited personal goal.
There are many adults with CP who go on to lead an independent life. How much independence they have will vary with each case. Adults with less severe types of CP may be able to live on their own and work a full-time job. Others with more severe forms of CP or coexisting conditions may require full-time assistance to complete daily tasks.
As there is no known cure for cerebral palsy, finding proper health care and continued support is essential to improving an individual’s quality of life. By establishing the best ways to manage their symptoms, young people with CP will be able to make the most out of life as they mature into adulthood.
Cerebral palsy and adulthood explained
Cerebral palsy is a permanent disorder that affects normal movement in various areas of the body. CP can be caused by a number of things, including a birth injury, which affects healthy development of the brain.
Cerebral palsy is a “non-progressive” disorder. This means that as children get older, their CP will not worsen.
While an individual’s cerebral palsy will not decline as they get older, there are a few things that can impact their overall health and wellness. The two factors that have the biggest effect on adults with CP are motor and intellectual impairments.
The most common challenges that adults with cerebral palsy experience are:
- Premature aging
- Walking or swallowing disorders
- Post-impairment syndrome
- Mental health conditions
- Challenges in the workplace
If more than one of the above issues persists, this can impact an individual’s overall well-being as an adult. However, cerebral palsy is not thought to be a life-threatening condition on its own. Symptoms of CP can be managed through various forms of therapy, alternative treatment methods or surgery.
Cerebral palsy and premature aging
Recent medical advancements have increased the life expectancy for adults with CP to about that of the general population. However, this hopeful development raises questions about how to best manage the effects of aging on top of living with a disability.
For those with CP, adulthood often includes premature aging. This condition is characterized by the early emergence of signs of aging before actually reaching old age.
Between about 20 to 40 years old, most adults with cerebral palsy will experience some form of premature aging. This is due to the excess strain and stress their bodies go through just to complete everyday tasks. For people with CP, walking up a small flight of stairs may require all the energy they have.
People with cerebral palsy use up to five times the amount of energy that able-bodied people do when walking or moving about.
The symptoms of premature aging are:
- Increased pain
- Difficulty walking or stiff muscles
- An increased risk of falls
- Dental health problems
- Long-term side effects due to medications or surgeries
While the signs of premature aging overlap with other conditions that can arise during adulthood, these are important symptoms to look out for. If left untreated, any of the symptoms above can worsen over time and cause serious health complications.
Walking and swallowing disorders in adults
Cerebral palsy is already a condition that directly impacts one’s movement and flexibility. Aging tends to compound these symptoms and effects.
25% of people with cerebral palsy who are able to walk as children will lose this ability as they get older.
Adulthood can onset musculoskeletal abnormalities that weren’t present during childhood or adolescence. This can impact an individual’s ability to walk independently. As a result, they may opt to use mobility aids, such as wheelchairs or crutches, to make life easier for them.
The most common conditions found in adults that would impact their ability to walk are osteoarthritis and degenerative arthritis. These conditions are the result of abnormal joint surfaces and joint compressions interacting over the course of a lifetime. Additionally, adults with CP have a heightened risk for developing overuse syndromes and nerve entrapments.
Swallowing disorders, or dysphagia, are also common in adults with CP. These disorders can occur at various stages of development, but they are typically caused by damage to the nervous system, head or neck.
Symptoms of dysphagia in adults are:
- Coughing during or right after eating/drinking
- Food or liquid leaking from or getting stuck in the mouth
- Recurring pneumonia or chest congestion
- Weight loss, poor nutrition or dehydration
- Embarrassment or lack of enjoyment surrounding eating or drinking in social situations
Fortunately, working with a speech therapist or physical therapist can significantly improve speech and mobility. Walking and swallowing disorders are likely to present a few added challenges, but their effects can be managed with proper treatment.
CP and post-impairment syndrome
Post-impairment syndrome is a fairly common condition among adults with cerebral palsy. Identifying this condition can be difficult, as many of the symptoms mimic those of CP and other related conditions.
Symptoms of post-impairment syndrome are:
- Weakness due to muscle abnormalities, bone deformities, overuse syndromes and arthritis
- Increased pain
- Repetitive strain injuries
Individuals with cerebral palsy use more energy than able-bodied people when walking or moving around. This can cause post-impairment syndrome. The best way to avoid developing this condition is by working with various therapists throughout early adulthood, such as an occupational therapist, who will work to strengthen these muscles over time.
Cerebral palsy and the workplace
As any other young adult, those with CP may experience issues in the workplace. This is because day-to-day activities, such as talking or walking, can become more demanding for individuals with CP as they reach middle age. This can impact their performance in the workplace.
Under the Americans with Disabilities Act (ADA) of 1990, all individuals with a mental or physical impairment are entitled to equal opportunities and independence. This means that individuals living with CP cannot be discriminated against in job interviews, school applications or in the workplace for their condition.
With this in mind, employers are required to provide “reasonable accommodations” for employees with disabilities. These accommodations include:
- Assistive technology or programs, such as spell checkers
- Adjusted work schedules
- Frequent rest periods
- Working within close proximity to restrooms, office machines, parking lots, etc.
- Use of a service dog
- Use of a personal care attendant
- Telephone assistance devices
- Writing or typing aids/grips
If a current or future employer is covered by the ADA and unwilling to provide such accommodations, contact the U.S. Equal Employment Opportunity Commission within 180 days of the alleged discrimination to file a charge.
By understanding their rights and the best way to manage CP symptoms, adults can continue to pursue their dreams and aspirations without any limitations.
CP and mental health
A condition like cerebral palsy can make the stresses of life a bit more overwhelming. Similarly, individuals with CP have a tendency to become shy in social situations out of fear of being bullied or teased by others. This can lead to the development of an array of mental health conditions. The most common disorders found in adults with CP are depression and anxiety disorders.
In a study performed by Dr. Gregory Liptak, a developmental pediatrician, it was reported that CP adults participate less in social interactions, employment, marriage and independent living than the overall population.
If you suspect that your son or daughter has developed a mental health condition as they enter adulthood, there are many important warning signs to look out for.
Early signs of depression are:
- Not sleeping or sleeping too much
- Not eating or eating too much (binge-eating disorder)
- Talking about death or self-harming
- A lack of desire to complete activities that once brought enjoyment
Early signs of anxiety are:
- Rapid heart beat
- Being “jumpy” or unable to sit still
- Dizziness, shakiness, excessive sweating or nausea
- Avoiding doing things involving other people or unfamiliar places
- Being overly worried about small things
While depression and anxiety are the most common disorders found in adults with CP, they are still at risk of developing any other mental health condition. An unfortunate result of having such a physically pronounced condition like CP is that sometimes mental and emotional health can be overlooked by doctors and specialists during exams.
The best way to address an adult with CP who may also have a co-occurring mental health condition is by being proactive in tracking any observable signs. The next step is to ensure they receive a full evaluation by a medical professional, who can conduct various tests in order to determine the mental health condition(s) at hand. Then, you will likely be referred to a specialist for any necessary therapy, medications or continued care.
Making the most of life with cerebral palsy
While a cerebral palsy diagnosis can be daunting for parents, there are many positive aspects of this condition that are worthy of a reminder.
Some reasons to smile about entering adulthood with CP are:
- Cerebral palsy is a non-progressive disorder, meaning it will not get worse as time goes on.
- The life expectancy of an individual with CP is comparable to that of the general population.
- Adulthood can mark many exciting milestones, such as walking independently for the first time, graduating school or accepting a first job.
- Individuals with cerebral palsy are granted protection under the ADA, which ensures their access to jobs and education.
- They will have the opportunity to serve as an inspiration for any person living with a physical or mental disability.
It’s important to remember that adulthood can be a difficult, exhausting process for anyone – disability or not. The symptoms of CP may present some extra obstacles along the way, but these can be managed through therapy, surgery, medications, and more.
In order to make the most of adulthood with cerebral palsy, it is essential to remain hopeful for the future. By maintaining a positive attitude and determination, individuals with CP can enter adulthood feeling excited for the journey ahead.
Looking for more information on cerebral palsy and adulthood? Try downloading our free Cerebral Palsy Guide, which features over 12 pages of information on this condition.