Adult Cerebral Palsy Care

Personalized CP Care You Won’t Outgrow

Cerebral palsy is the most commonly-diagnosed physical disability in children. Decades ago, many infants and toddlers with cerebral palsy were not expected to achieve a normal life expectancy. But modern treatment advances mean more adults with cerebral palsy are living longer lives, and those with less severe forms can expect the same lifespan as people without cerebral palsy. As people with cerebral palsy age, both their symptoms and the care they need can change significantly from what they experienced in childhood. In addition to contending with the physical, medical and potential cognitive aspects of their disease, an adult with cerebral palsy must also face the same age-related health risks as any adult, including cardiovascular disease, obesity, diabetes, osteoporosis, frailty and fracture risk. These “normal challenges of aging” can grow much worse much faster in people with cerebral palsy, making preventive care a top priority for these patients, along with primary symptom management.

Adults living with cerebral palsy need individualized, multidisciplinary care that grows with them. University of Michigan Health is home to one of only a few dedicated adult cerebral palsy clinics in the country.  The Adult Cerebral Palsy Clinic focuses on managing the symptoms of cerebral palsy while helping patients navigate the manageable, often preventable health challenges all of us face as we grow older.  We discuss life issues such as independence and accessibility, manage equipment and medication needs, and offer injections, intrathecal baclofen, and access to surgeons skilled in treating individuals with cerebral palsy. 

For adolescents transitioning from pediatric to adult care we also offer the Physical Disabilities Transitional Care and Adult Clinic, one of the only clinics in the state devoted to the specialty care of adolescent and adult patients with childhood-onset physical disabilities.

About the Adult Cerebral Palsy Clinic

Care in the Adult Cerebral Palsy Clinic is overseen by specialists in physical medicine and rehabilitation (PM&R). Since each patient’s needs are unique, PM&R specialists can collaborate with any of following specialists as needed:

• Clinical nurse specialists
• Endocrinologists
• Gynecologists
• Neurologists
• Neuropsychologists
• Neurosurgeons
• Occupational therapists
• Ophthalmologists
• Orthopedic surgeons
• Orthotists
• Physical therapists
• Speech and language pathologists
• Urologists
• Wheelchair seating technologists

What to Expect During a Clinic Visit

Your first visit to the clinic could last more than an hour; return visits average about 30 minutes. After the initial visit, follow-up visits are usually scheduled every six to 12 months. During an appointment, body weight and other measurements are recorded, and the patient’s medications are reviewed. A PM&R specialist performs an evaluation and, if necessary, helps coordinate referrals to other service providers. The clinic’s primary objective is to address each patient’s specific symptoms, which often include more than one of the following: Physical difficulties impacting:

• Control of movement
• Muscle tone/spasticity
• Weakness
• Reflexes
• Balance
• Low bone density
• Pain and fatigue
• Constipation

Medical and cognitive difficulties, including:

• Swallowing disorders
• Seizures
• Constipation
• Bladder problems
• Saliva control issues 
• Cognitive impairments
• Mental Health issues

As you age, you may also lose mobility at an increasing rate, and are more likely to experience fatigue and muscle and joint pain. These symptoms increase the likelihood of becoming physically inactive or immobile. During clinic visits, you and your clinician should discuss lifestyle modifications to prevent these conditions or reduce their impact, including:

• Increasing physical activity and decreasing sedentary behavior to reduce the risk of cardiovascular and metabolic disease risk
• Adopting strength-building and balance exercises to improve muscle health and function, as well as to reduce the risk of falls and fractures
• Making smarter nutritional choices to help manage body weight and blood sugar
• Addressing sleep disorders such as insomnia and chronic obstructive sleep apnea 
• Tracking progress and making further lifestyle adjustments between clinic visits

Adult Cerebral Palsy Research Initiatives

Above and beyond managing the symptoms of cerebral palsy, The Adult Cerebral Palsy Clinic and Research Program also focuses on helping patients reduce the impact of many common, chronic, lifestyle-related conditions seen in adults. Recent University of Michigan research shows that adults with cerebral palsy are between two and five times more likely to have one or more of these conditions than are adults without cerebral palsy:

• Diabetes
• Asthma
• High blood pressure
• Cardiovascular disease
• Stroke
• Emphysema
• Joint pain
• Arthritis
• Osteoporosis

Read more about the research here. Every day, U-M clinicians and researchers strive to find new therapies and techniques to improve quality of life for individuals living with cerebral palsy.

• Quality of Life – Clinicians in the Department of Physical Medicine and Rehabilitation are leading studies about quality of life and health outcomes in teens and adults with cerebral palsy.
• Upper Limb Movement and Posture – Researchers in the U-M School of Kinesiology, in collaboration with the Department of Physical Medicine and Rehabilitation, are participating in innovative research exploring the quality of upper limb movements relative to posture, balance and dual task condition in adults with cerebral palsy.
• Metabolics – Physicians and researchers are investigating how metabolics (oxygen consumption, glucose use) work in people with cerebral palsy.
• Exercise – Researchers are investigating the effects of exercise and fitness on people with cerebral palsy.
• Nutrition – Investigators are also at the forefront of exploring the role diet and nutrition play in helping adults with cerebral palsy improve overall health and manage symptoms.
• Sleep – the involuntary muscle movements (dyskinesia) commonly experienced by people with cerebral palsy frequently disrupt healthy sleep, and sleep disturbances in turn can make dyskinesia worse. Researchers in neurology, sleep medicine and other specialties are investigating how to break this vicious cycle to improve both sleep quality and quality of life for people with cerebral palsy.

University of Michigan Health physicians and staff also routinely author publications and present at national and international conferences on topics of interest to the cerebral palsy community. For more information about ongoing clinical trials, please visit: https://umhealthresearch.org/

Resources

• University of Michigan Health-sponsored exercise guidelines for patients with cerebral palsy
• The Physical Fitness and Exercise for Adults with Cerebral Palsy fact sheet from the American Academy for Cerebral Palsy and Developmental Medicine

Make an Appointment and Track Progress

Appointments may be scheduled by calling 734-936-7175, or visit our our Make an Appointment with Rehabilitation Medicine page. Follow-up appointments may also be made at the clinic when checking out after an appointment. (Please note that due to a high patient volume, appointments are scheduled several weeks or months in advance.)  MyUofMHealth, a secure online patient portal system, is available for patients to view test results, verify or change appointments, send and receive message from schedulers and health care providers and more. Learn more about MyUofMHealth here.