Living With Athetoid Cerebral Palsy

Living with Athetoid Cerebral Palsy: My Journey, Tips, and Experiences 

Living with athetoid cerebral palsy has shaped every part of my life. It has influenced how I move, how I communicate, how I parent, and even how I see the world. While cerebral palsy presents challenges every day, it has also taught me resilience, patience, gratitude, and determination.

If you’re newly diagnosed, raising a child with cerebral palsy, or simply curious about what it’s like, I hope my story helps you better understand this disability.

What Is Athetoid Cerebral Palsy?

Athetoid cerebral palsy, also called dyskinetic cerebral palsy, is a type of cerebral palsy that causes involuntary, uncontrolled muscle movements. These movements can affect muscle tone, balance, posture, speech, and coordination, making everyday activities more difficult.

I have athetoid cerebral palsy. There are actually a few things I appreciate about it. My muscles stay flexible, and I’m probably more flexible than many people my age. But the involuntary movements can also be exhausting.

The hardest part isn’t always the physical effort—it’s the timing.

My biggest spasms always seem to happen during the quietest or most important moments: at Mass, during a wedding, at a funeral, in an important meeting, or while meeting someone new. If there’s a moment when I’d love to stay perfectly still, that’s usually when my body has other plans.

I use a motorized wheelchair because walking isn’t one of my motor skills. My wheelchair gives me independence, allowing me to work, travel, teach, and enjoy life with my family.

What Causes Athetoid Cerebral Palsy?

Athetoid cerebral palsy is caused by damage to the basal ganglia, the part of the brain responsible for controlling movement. This damage can occur before, during, or shortly after birth.

Some common causes include:

• Premature birth
• Low birth weight
• Infections during pregnancy
• Lack of oxygen during birth
• Head injuries
• Certain genetic conditions

My Story

My cerebral palsy was caused by a lack of oxygen during birth.

My mother went into labor, but she was left alone for several hours. I was breech, meaning I was coming out feet first instead of head first. When I was born, there were no medical staff in the room.

Because I wasn’t receiving enough oxygen, I technically died.

Thankfully, a doctor happened to walk past my mother’s room, realized something was terribly wrong, and immediately began CPR. I was nearly pronounced dead until another doctor intervened and helped save my life.

That lack of oxygen permanently damaged the part of my brain that controls movement.

Ironically, my parents didn’t know I had cerebral palsy for quite some time. It wasn’t until I was around two years old that a physical therapist recognized the signs and explained what was happening.

Looking back, I’m incredibly grateful that doctor walked by at exactly the right moment. My life has certainly looked different than most, but I’m thankful I’ve had the opportunity to live it.

Symptoms of Athetoid Cerebral Palsy

Symptoms vary from person to person, but they may include:

• Involuntary muscle movements
• Fluctuating muscle tone (sometimes too tight, sometimes too loose)
• Difficulty with coordinated movement
• Problems with balance and posture
• Speech and swallowing difficulties
• Developmental delays
• Seizures in some individuals

Personally, I no longer have seizures, although I did as an infant.

One thing many people don’t realize is how easily my body reacts to surprises. Sudden noises, someone touching me unexpectedly, or being startled can trigger large involuntary movements. Stress, anxiety, excitement, and even complete silence during an event can make my spasms worse.

Sometimes people stare because they don’t understand what’s happening. Over the years, I’ve learned that their curiosity says more about their lack of understanding than it does about me.

Diagnosis and Treatment

Doctors diagnose cerebral palsy through a medical history, physical examination, and imaging tests such as MRI or CT scans.

There is no cure for cerebral palsy, but many treatments help improve quality of life.

Physical Therapy

Physical therapy helps strengthen muscles, improve flexibility, and maintain mobility.

As a child, I received regular therapy. As an adult, however, accessing therapy has become much more difficult because insurance often limits coverage. I wish adults with cerebral palsy had greater access to ongoing therapy, because our bodies continue to change throughout life.

Occupational Therapy

Occupational therapy focuses on daily living skills and independence.

As a child, I wasn’t a huge fan of occupational therapy because I didn’t always understand how it connected to my everyday life. Looking back, I appreciate what it taught me, and I think I would benefit from it much more now as an adult.

Speech Therapy

Speech therapy can improve communication and swallowing.

I wasn’t thrilled to attend speech therapy as a child either, but I absolutely believe it helped me. Because swallowing has become more difficult as I’ve gotten older, I would probably benefit from speech therapy again today.

Medications

I currently take Baclofen and diazepam to help relax my muscles and reduce spasms. They don’t eliminate my involuntary movements, but they do make them more manageable.

Surgery

Some people with cerebral palsy require orthopedic surgeries or other procedures.

Personally, I’ve never needed surgery because of my cerebral palsy.

Living with Athetoid Cerebral Palsy

Living with cerebral palsy isn’t always easy, but it also isn’t a tragedy.

I’ve been a teacher, a wife, a mother of two amazing children, a disability advocate, a writer, and someone who loves traveling, decorating for the holidays, going to concerts, and spending time with family and friends.

Cerebral palsy is part of who I am, but it doesn’t define everything about me.

I’ve learned that independence doesn’t always mean doing everything by yourself. Sometimes independence means directing your own life, making your own decisions, and accepting help when you need it.

There are hard days. My muscles get tired. Swallowing has become more difficult with age. I have arthritis, and my body works harder than most people realize.

But there are also wonderful days filled with laughter, purpose, and joy.

If there’s one thing I hope people take away from my story, it’s this:

Your disability may change how you do things, but it doesn’t have to change your dreams.

Accept yourself. Advocate for yourself. Keep learning. Keep growing. And never let someone else’s expectations become your limits.

Thank you for reading. If you have questions about living with cerebral palsy or would like me to write about a specific topic, I’d love to hear from you in the comments.