What Does It Feel Like to Have Cerebral Palsy?
Key takeaways:
Cerebral palsy (CP) is a condition that affects a person's ability to move, maintain balance and posture, and communicate.
For Morgan McCarthy, living with CP means sometimes her movements aren't as smooth as she'd like them to be.
But Morgan leads a fulfilling life and says CP isn't the most interesting thing about her.
When Morgan McCarthy was a toddler, her parents noticed that she wasn't reaching developmental milestones the same way her three older siblings had.
Her walking, for instance, seemed strained. When she did walk, it would be on her tiptoes, and she would grasp onto objects for support. But, at the time, her way of walking was the only hint that something deeper was going on. She was talking and holding conversations, she’d happily sit still and watch "Barney," and she enjoyed independent play.
Eventually, her parents took her to a doctor and discovered that she had periventricular leukomalacia — a form of cerebral palsy (CP), a lifelong condition that affects movement and communication.
Morgan, now 28, uses an analogy to explain what the condition feels like to her.
"It's like changing a car radio and waiting for the switch from FM to AM to click," she says. "There's that static. That's how my brain feels when I try to walk or move muscles."
Can you live a 'normal' life with cerebral palsy?
CP is a permanent movement disorder caused by damage to parts of the brain that control movement. Symptoms can vary and might include poor coordination and stiff and weak muscles. But Morgan hasn't let CP put limits on her life. She has been able to do everything from tap dance to earn advanced degrees.
Sometimes, movement just takes extra effort. "My body tries to do those things, but I have to focus very hard and very deeply for my body to do that," she says.
The type of CP Morgan has is usually caused by a lack of oxygen or blood flow to the brain during development. "They think I lost oxygen somehow in the womb sometime between 28 and 32 weeks," Morgan says.
She had surgery at age 4 to help her walk with her full foot, rather than on tiptoes. She grew up attending public schools, and at times she used a motorized scooter to get around. Teachers accommodated her needs by giving her extra time on projects and a separate classroom to work in when needed. She was a Girl Scout and a cheerleader, took tap dance classes, and learned to ski and ice skate.
After high school, Morgan earned a bachelor's degree in English and a master's degree in hospitality management. She now lives in a separate living space adjacent to her parents' home in Saratoga Springs, New York. She dines out with friends and goes to movies. She loves sushi and many Bravo TV reality programs. And she works with Diversability — a social community of people with disabilities and those who support them — to educate people about CP.
For eight years, she had a support dog, Dewey, who helped her with daily tasks. Dewey recently retired because of kidney problems, but Morgan hopes to get another trained support dog soon.
Morgan is learning how to run, which is something she's never done. She's taking a break from dating, but when she feels like trying it out again, she says she'll use dating apps, as she has in the past.
"I’m pretty much just like everybody else," she says. "It just takes me a little bit longer to do things."
'Disabled and proud of it'
Morgan doesn't want CP to be the most interesting thing about her. Her long-term goals include skydiving, doing more traveling, training to become a life coach, and being on the cover of a national magazine — "front-facing and disabled and proud of it."
She'd like to help hotels make sure their properties are handicap-accessible. She also wants to educate pharmaceutical companies to develop packaging that works for people like her who have a hard time with fine motor skills.
She's also writing a non-fiction book: part memoir, part survival guide, part advice column. It will have pro tips for living with CP and workarounds she’s learned over the years.
"I just hope to show people that you can still live your life with CP and still be abundantly joyful," she says. "When I tell people I have CP, I want them to know I’m a whole person beyond that. I live with it. I don’t live in spite of it."
Life tips from someone with CP
Morgan has tips not just for others living with CP but also for caregivers and the public at large:
1. Keep your medicine cabinet stocked
In addition to over-the-counter pain relievers and prescription medications that help with muscle tightness, Morgan stocks her medicine cabinet with diclofenac (Voltaren) arthritis gel. "I go through Volteran gel like it’s my job," she jokes.
2. Movement and massages are critical
Morgan works out multiple times each week, sometimes with a physical therapist or a personal trainer. She enjoys "nerve flossing" techniques and exercises that can alleviate pain and tension. She tries to get two massages each week. She also uses a foam roller "with the spiky parts — to keep the fascia moving."
3. Calm practices are soothing
For Morgan, "calm" practices, like yoga and taking baths, make a difference. She turns to yoga deep-breathing techniques when she's frustrated. She also likes soaking in an epsom salt bath, especially using products scented with lavender or elderberry. Scents matter, she says. She is a big fan of essential oils. She uses peppermint room sprays and sometimes dabs frankincense on her pulse points or behind her ears
4. People with CP need time to focus
Morgan wants people to understand that she’s not being rude when she doesn't respond to a question. "There are some people who can walk and talk, or chew gum and pat their belly button at the same time, but I can't. When I walk, I have to just walk. I can't focus on other people asking me things," she says. "To respond, I'll have to be still and lean on something or sit down."
5. Weighted blankets feel good
Weighted blankets are Morgan's secret to a good night's sleep. "I have a 15-pound one, and that's just enough to where it feels good and I can relax, because my muscles are always tight," she says. "It can be 100 degrees in July and August, and I'm still going to be wearing a blanket."
6. Your state might have services to offer
Morgan suggests checking to see what support services your state can offer. New York law provides Morgan a home health aide who assists with grocery shopping and other errands.
7. Make your home work for you
Morgan has made her living space work for her. It was originally her grandmother's space and came complete with support rails in the bathroom. She appreciates the accommodations.
8. Say 'thanks' instead of 'I'm sorry'
Morgan recommends learning to say "thank you," instead of "I'm sorry," when CP causes inconveniences. If she's late when meeting up with a friend because of her CP, for instance, she doesn't apologize. Instead, she says, "Thank you for waiting for me." Or "Thank you for your patience."
9. Don't touch my shopping cart
Thanks for asking, store employee, but please don't touch Morgan's shopping cart. "There's always an employee asking if they can take the cart for me, and I'm like, 'Actually, if you don't mind, no.' Because that's what I'm leaning on to walk so I don't have to carry my own mobility [gear]. I use it to disguise myself."
10. Be kind
Morgan wants people to understand that her challenges today could be theirs tomorrow, she says. Age and other conditions that have a late onset can cause stiff muscles or sudden limb movement. She advises people to be kind to themselves and others.
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