Adulthood with Cerebral Palsy: Life Expectancy & Well-Being

The Different Types of Cerebral Palsy in Adults

The same forms of cerebral palsy (or cerebral motor impairment) are found in adults as in children:

• From mild to more severe forms of cerebral palsy.
• Dyskinetic, athetoid, spastic cerebral palsy.
• Monoplegia, diplegia (=paraplegia), triplegia, quadriplegia (=tetraplegia), or tetraparesis.
• Little’s syndromes (or Little’s disease).

This article provides general information about all forms of cerebral palsy, and all can affect adults.

What Is the Life Expectancy of an Adult with Cerebral Palsy?

These days, the majority of children born with cerebral palsy (or cerebral motor impairment) have a life expectancy similar to that of the general population (Bagazgoïtia 2021).

The life expectancy of people specifically affected by Little’s syndrome or Little’s disease is also similar to that of the general population.

Furthermore, even though functional status slightly decreases with age, significant or abrupt changes are not expected. It is possible to maintain a good quality of life for a long time (Turk 2009).

How Does Well-being Evolve for Adults with Cerebral Palsy?

A research team investigated the development of 164 individuals from childhood to ages 22 to 27 (Bagazgoïtia 2021). Their psychological well-being decreased linearly by 0.78 points (on a scale of 0-100) per year during this period. However, their satisfaction with their social relationships increased.

Motor deficits had a more negative impact than intellectual deficits. Frequent pain significantly reduced psychological well-being, and seizures were associated with a decrease in the quality of life in the social relationships domain.

Interestingly, a group of people, conversely, saw their quality of life improve each year during this period. Being realistic does not prevent being optimistic: you or your loved one may be part of this group of people!

Some factors that, all else being equal, are associated with a better-described quality of life:

• Pursuing university studies.
• Being in a relationship.
• Engaging in sexual relations (Maestro 2018).

How Does Spasticity Evolve in Adult Cerebral Palsy?

Can spasticity disappear? This is one of the questions I receive most frequently from people suffering from spasticity.

While the typical development of spasticity in children with cerebral palsy is studied and known, I have not found any publications specifically addressing the evolution of cerebral spasticity in adults.

My experience leads me to believe that spasticity is relatively stable once an individual reaches adulthood. Some people continue to take medical or orthopedic treatments to limit its negative impact, while others discontinue them.

However, this is more likely due to an unfavorable benefit/risk balance than to a “natural” decrease in spasticity.

What are the specificities of our aging process when living with cerebral palsy?

In this section, I address three phenomena and their consequences:

1. The decline in brain plasticity with age: This is not specific to individuals with cerebral palsy but applies equally to the general population. As we age, our brain’s ability to recover and restructure diminishes, affecting the acquisition or development of new capacities such as endurance, memory, or learning a new sport.
2. The onset of “premature” aging in the case of cerebral palsy.
3. The post-disability syndrome, sometimes distinguished from premature aging.

Brain Plasticity Changes Over Time

There is a difference between the brains of children with CP compared to adults with CP. This difference is not specific to individuals with CP but exists equally in the general population: as we age, our brain’s ability to recover and restructure diminishes, affecting the acquisition or development of new capacities such as endurance, memory, or learning a new sport.

This phenomenon is known as brain plasticity. It is maximal around 4 to 8 years of age in children and decreases slightly over the years.

Maximum plasticity is observed for language acquisition before or around the age of 1.

This does not mean that it is impossible to make progress in anything as one ages. It simply requires more effort. This diagram illustrates it:

When adults discover this data, they sometimes think, “Ah, if only I had known, I would have done this or that, things would have been different.” I completely understand this reaction.

However, knowing these pieces of information by heart doesn’t guarantee that you would have successfully implemented effective solutions to take better advantage of brain plasticity. Many factors could have hindered this desire:

• Side effects of treatments.
• Lack of motivation.
• Lack of time or money.
• Desire to prioritize quality of life, well-being, integration rather than physical recovery at all costs.

📚 Main source: cerebralpalsyguide.com

Why do we talk about premature aging?

For people with CP, adulthood often comes with premature aging. This condition is characterized by the early onset of signs of aging before reaching old age.

These signs often appear between 20 and 40 years old. This is due to the excessive effort and stress their bodies undergo just to perform daily tasks (such as climbing a few stairs).

Indeed, in the case of cerebral palsy, up to five times more energy is used to walk or move compared to other people.

Symptoms of premature aging include:

• Increased pain.
• Difficulty walking or muscle stiffness.
• Increased risk of falling.
• Dental health problems.
• Long-term side effects of medications or surgeries.

⚠️ Of course, this does not mean that all people with CP will be affected by these symptoms!

One-quarter of people who could walk as children will lose this ability as adults. This still means that the vast majority (3/4) will not lose it!

Most of the time, the cessation of walking is related to the onset of osteoarthritis, a source of pain or deformities. The loss of walking is more common in people with bilateral cerebral palsy than unilateral cerebral palsy. (Opheim 2009)

The last area that may be affected with aging is swallowing (dysphagia). It may manifest as follows (again, only a small proportion of people are affected):

• Coughing during or just after eating or drinking.
• Leakage or blockage of food or liquids in the mouth.
• Recurrent pneumonia or chest congestion.
• Weight loss, poor nutrition, or dehydration.
• Discomfort or lack of pleasure in eating or drinking in social situations.

📚 Main source: cerebralpalsyguide.com

Post-Impairment Syndrome

This is a fairly common condition in adults with cerebral palsy. It can be challenging to identify because many of its symptoms resemble those of cerebral palsy and other related conditions.

Symptoms of post-impairment syndrome include:

• Weaknesses due to muscle abnormalities, bone deformities, overuse, or osteoarthritis.
• Increased pain.
• Fatigue.
• Repeated microtraumas.

The best way to prevent it is to gradually and consistently increase physical or intellectual activities throughout life. Do not hesitate to ease off (without stopping completely) as soon as you feel discomfort or fatigue.

These recommendations are applicable to everyone – with or without cerebral palsy – but in people with cerebral palsy, the consequences can potentially be more impactful.

I understand that it might be frustrating to come across an article that provides a descriptive assessment of the situation but does not offer concrete suggestions to maximize the chances of evolving quickly and well.

Some Reasons to Still Smile in Adulthood

Here are some reasons to smile at the idea of entering adulthood despite cerebral palsy:

• The condition itself is not progressive. It does not worsen over time.
• Life expectancy is comparable to that of the general population.
• Adulthood can be marked by many exciting milestones, such as walking independently for the first time, being able to drive, obtaining a degree, entering a first job, having a child, etc.
• The older the decades, the easier daily life becomes.
• It is possible to be a source of motivation, admiration, or inspiration for many people (with or without a disability).

Adulthood can be a challenging and exhausting process for anyone, with or without a disability. By maintaining a positive attitude and demonstrating determination, individuals with cerebral palsy can enter adulthood feeling excited about the journey ahead.