Adults with cerebral palsy fear aging in an ignorant world

Kim Petrillo made her way to the cafe’s counter in the bustling Brunch House in Prospect, Connecticut, to pay for her crepes and three cups of vanilla coffee. Strangers watched her as she stepped carefully forward, surfing her hand over chairs and tables to support herself. She called it “pigeon-toed,” the way her feet and legs dragged inwards. It looked as if magnets were pulling her feet and hips stiffly together and she had to fight against the pressing force. It caused Petrillo’s walk to resemble more of a rocking waddle, her shoes clopping disruptively even though they had smooth, flat bottoms and her delicate heart necklace to bounce against her chest.

Petrillo has a condition called cerebral palsy (CP) and at age 62 it has started to slow her down in spite of her tenacity.

“There’s a lot of fear for me being in the age group I am,” Petrillo said.

Petrillo has never been a fearful person before–she is always very put together in appearance, with a polished makeup look every day to complement her thought out outfits, to match her unequally unfazed interior, ready to adapt to any challenge. But thinking about how her mobility could continually decline has struck a “level 10” anxiety in her recently. Especially as doctors also do not know how much her pain and leg weakness will worsen. Petrillo said “nobody has answers” to what her very independent life could look like even two years from now. For her, the fear is of the unknown future.

This is a common fear for adults with CP.

WHAT IS CEREBRAL PALSY?

CP affects about 18 million people worldwide with about one million cases in the United States, the Cerebral Palsy Alliance reported. It is the most common lifelong physical disability in the world.

Despite its prevalence, there is a definite lack of funding for research. For example, Lily Collison reported in her book “Spastic Diplegia Bilateral Cerebral Palsy,” that Down Syndrome received $72 million for research from the National Institute of Health (NIH) in 2020, whereas CP, which is three times as common as Down Syndrome, only received $24 million from the NIH in the same year. In spite of that, the U.S. is still a global leader in medical research about CP.

Funding is not the only issue. There is also a lack of reliable information about how the condition changes with age. Research on CP continually centers primarily on children, even though the condition is lifelong. Because of this, the medical field remains largely ignorant and uneducated in how the condition can affect someone after they age out of specialized pediatric care. This means people like Petrillo are left anxious and uncertain.

“There's not a lot of data for adults in my category,” Petrillo said, referring to others who have CP and are ambulatory, or able to walk. “It's like, once you get to a certain point, they're like, okay, good luck for the rest of your life.”

Data supports Petrillo. A study published in The National Library of Medicine in 2015 reported that from 2001 to 2013 “children under 6 years received the largest proportion of research funds, while studies focusing on adults with CP received a relatively small amount of funding” from the NIH. The article said research about adults received only 4% of the funds, amounting to $8 million, which can fund about two to three studies across that whole 12-year span.

But what does it even mean to have cerebral palsy in the first place? That answer is different for each person that has it. And the exact cause of it is also unknown.

What is definite is that cerebral palsy occurs after there is “damage or abnormal development” in the brain, either before birth or during birth, according to the National Institute of Child Health and Human Development. There are four types of cerebral palsy, though the most common type is spastic, which affects 60 to 85% of those with the condition, Collinson reported in her book. The Centers of Disease Control said spastic CP causes “increased muscle tone” which causes muscle stiffness and can contribute to “awkward” movements, like Petrillo’s jerky walk. The spasticity can affect both legs (diplegia), an arm and a leg on the same side of the body (hemiplegia), either an arm or a leg (monoplegia) or both arms and legs (quadriplegia).

To give a better impression of the condition, think about the effort of climbing up a flight of stairs. It might not take that much energy, but it is more difficult and tiresome than walking across a flat surface for the same distance. Collinson reported in her book that “for children with spastic diplegia (CP that affects both legs) walking is roughly as demanding as climbing stairs would be for a typically developing child.”

Walking is very demanding for those with CP. They use up to three to five times the amount of energy that able-bodied people use when they walk and move.

So, for every mile you walk, it can feel like five for your companion with CP. Because of this, individuals with CP can get fatigued faster and their muscles show strain at an earlier age.

Though the type of symptoms are relatively the same for each person with the neurological condition–like compromised balance, lack of flexibility and coordination, stiff muscles and sometimes muscle spasms and joint pain–the severity and manifestation of these symptoms can be different.

In an article published in the Neurology Journals in 2019, Dr. Michael Shevell said “It (CP) is never the same disorder twice. If you have seen one individual with cerebral palsy, you have simply seen just one individual with cerebral palsy.” Later in the article, Dr. Shevell proposed the name of the condition be changed to cerebral palsy spectrum disorder, as he believes CP is not a “discrete unitary entity” because a “spectrum, range, or array of possibilities exist in terms of the individual experience.”

Shevell is certainly right that every individual is different. At 62 with spastic diplegia Petrillo can still walk, though she uses a cane or walker for longer distances, whereas Heather Hancock, 55, who has the same diagnosis and also grew up walking independently without mobility aids, started using a wheelchair 20 years ago because of osteoarthritis in her knees. Meanwhile, Charmaine Allen, 57, is still able to go to the gym four to five times a week and go for 40-minute daily walks and the very disciplined Aseem Rastogi, 45, starts his day with three hours of exercise before he works at home, doing some form of stretching every two hours to prevent stiffness or pain.

The fact that CP is a neurological condition that is unique in the way it impacts each person makes it very difficult to treat, but also to research. Gemma Cook is a doctoral student at Brunel University London in the United Kingdom who is centering her thesis around people with CP.

“It's a very complex research area, exactly for reasons like the heterogeneity of the group and the fact that it's multi-mobility as well,” Cook said. “It's more a case of tackling the complexity of that originality by focusing really in depth on the individual and kind of considering that individual as a critical case.”

“It (CP) is never the same disorder twice. If you have seen one individual with cerebral palsy, you have simply seen just one individual with cerebral palsy.”
Dr. Michael Shevell

During her research, Cook conducted a study that revealed 83% of adult respondents with CP said that their mobility is worse now than when they were 18. Cook thinks that there is still a lack of research for adults because of “the legacy of it being known as a non progressive condition” and since “all services tend to still really be front-loaded to children.”

Survey results based on 31 respondents with CP

Countless hospitals in the U.S. have physiatrists and surgeons well-versed in the complexities of the condition. Some, like Boston Children’s Hospital, even have a “cerebral palsy and spasticity center” staffed with doctors with “extensive experience in treating the full spectrum of cerebral palsy.” The same sort of specialized units do not generally exist for adults, although some pediatric centers are now offering to treat adults too, like at one of “the world’s top cerebral palsy centers” at Gillette Children’s in St. Paul, Minnesota.

The pediatric centers at these hospitals tend to focus on improving a child’s mobility as much as they possibly can either by implementing mobility aids (a lot of children wear leg braces until their teenage years), prescribing medications to help with spasticity and pain and physical therapy, and surgery to fix gait abnormalities. For example, a survey of members of a CP support group conducted for this article revealed that, though not everyone has had the same number of surgeries (three participants had over 15 while eight participants had had zero), 30 out of 31 participants had physical therapy at some point. Treatments like surgery are usually scheduled to fix abnormalities in tandem with growth spurts, but once someone is done growing and then ages out of pediatric care, it is believed that no further improvement can be made. Treatment options then change to focus on how mobility can be maintained. Sixty-five percent of survey participants rated the transition from pediatric to adult care a 1 out of 10, meaning they did not receive enough assistance or guidance through the change, and 78% of participants said that medical professionals did not mention how their mobility can change.

One of the survey participants, 27-year-old Nina Portolan from Belgrade, Serbia wrote that “At 16 years old I was told 'I don't know what you want but you are never going to see progress again and I can't do anything for you.' Ever since then, I've been figuring things out on my own.”

HOW DOES MOBILITY CHANGE OVER TIME?

One thing that remains constant is the fact that even though the condition is considered stagnant, meaning the injury to the brain that caused the CP cannot worsen, a person’s mobility and function with the disability can drastically change over time. This is like how an able-bodied person’s mobility worsens with age–the important distinction is that someone with CP will experience the effects of age on the body earlier than the average person. A 2015 study published in the National Library of Medicine showed that while 28% of participants without CP experienced joint pain, 44% of participants who had CP in a similar age group lived with joint pain.

It’s more than just statistics, though. It’s people's lives.

Change and decline in mobility is a tough subject for people with CP. Take 72-year-old Linda Lood, for example. She has hemiplegia, meaning the CP affects only her right arm and right leg which she “doesn’t trust to do anything in particular.” She worked as a nurse in the NICU for 37 years in Illinois and would never tell anyone she had a disability. She would just adapt to whatever physical task was presented to her if need be.

“Until I was about 50 nobody really knew (about my CP) unless they knew me well,” Lood said. She was born in 1952, almost 40 years before the Americans with Disabilities Act was passed, so there was a greater stigma around disability when she was growing up. “I could hide the CP pretty well until (age) 40, 45 then it got worse. Then I also got arthritis.” This change in her mobility, that consisted of pain and worsening balance, would eventually lead to her retirement at age 62.

“I pretty much retired because some of the people I was working with…It was depressing for them to see me fall,” Lood said, who has broken multiple bones from these incidents.

Despite the circumstances that led to her retirement, she still does what she loves–maintaining her garden, going to spin classes where she “spins for 45 minutes like a crazy idiot” because other forms of exercise are “boring,” and playing with her grandchildren who tease her about being slow. It’s not all fun and games, though. She now falls about twice a week because of her worsening balance.

This is not an uncommon change. In the survey conducted for this article, 10 out of the 31 adult participants said they are receiving medical treatment specifically for balance issues. Allen, one of the survey participants, described her increased lack of balance as “really shocking.”

“I mean, I don't have balance. If somebody walks backwards and they're gonna walk into me, then I know I'm gonna fall over,” Allen said. Her balance is worse when standing still, rather than when she is walking, so she uses a walking stick if she has to stand in one place.

Even though it is harder to get around, she still highly values exercise. Allen lives in a compound in Waterfall, South Africa, north of Johannesburg, which is just as picturesque and teeming with nature as it sounds. An avid animal and nature lover, Allen will go on daily walks and hikes with her husband where they can encounter deer, baboons, snakes and a whole collection of different birds–a necessity for Allen as one of her main complaints once visiting the U.S. was that Salt Lake City, Utah had “no birds” which gave her goosebumps.

On one of these walks, Allen’s lack of balance helped fulfill one of her life long dreams. She was walking, her husband ahead of her, when she tripped, face planting messily onto the ground. Inches from her face was one of her favorite animals: a chameleon–a tiny miracle she would never have spotted if her legs had supported her.

On most occasions, though, her balance is not much of a blessing. When asked what the hardest thing to come to terms with related to her disability, Allen said: “I think it's the way I walk, and my lack of balance, which really is hectic. It affects everything. That's probably what people notice when they first see me.”

Allen claimed people tend to stare at her when she walks past, and once an onlooker was so distracted by her odd gait that he walked into a pole while watching her.

Allen enjoying a nature walk. Photo provided by Charmaine Allen

Allen doing one of her favorite exercises: horseback riding. Photo provided by Charmaine Allen

O'Leary on the VibroTrain machine, performing strengthening exercises. Photo provided by Karen O'Leary

O'Leary on the VibroTrain machine, performing strengthening exercises. Photo provided by Karen O'Leary

Another common symptom of aging with CP is pain. Karen O’Leary, 55, experienced a lot of joint pain due to her abnormal gait and abnormal way of standing, where her knees can knock into each other, something called crouch gait. She is adamant it is because she overworked herself when she was younger, though other research shows that the more physically active you are the better your mobility should be as you age with CP. At that time, she barely left her house as “it was painful to stand up and walk and move,” she said.

“The pain was excruciating,” O’Leary said. She remembered when she would get public transportation: “I'd stand up at a bus stop, because I never knew whether I'd be able to sit down and get up again.” Still, O’Leary was mindful of others. “I didn't want to hold the bus up. You know, it's just like you get to the point where you are bracing yourself for that pain.”O’Leary ended up finding alternative forms of medicine to help with her pain such as flower essences and a vibration machine that alleviates some of her spasticity and muscle tightness which leaves her body “freed up completely,” an experience “that’s unlike anything else.”

The vibration machine looks sort of like a treadmill, with a raised platform and handles at the front for stability, but instead of the platform moving like a walking escalator, the platform vibrates. While either standing, sitting or lying on the vibrating platform you can perform a number of normal exercises and the vibration in theory transmits energy to your body and causes your muscles to contract and relax countless times. This causes your muscles to work harder during the exercise which can then aid in weight loss and building muscle, but a 2018 study by the NIH showed it can help people with CP in other ways. The study reported that repeated vibration therapy “reduced spasticity and coordination deficits,” and improved mobility and muscle strength. It has certainly done that for O’Leary, who cannot help constantly returning to the subject of it. It was so integral to alleviating her pain and spasticity, that she was willing to take nine buses to get to the gym that had the machine.

“Those machines free up my body enough, or alleviate the lactic acid, the overuse (of my muscles) to allow me to keep going,” O’Leary said, getting this spark in her eye as she does whenever she talks about this. “Admittedly, that required me going in every day, but I was prepared to do that, because my quality of life just changed so much.”

Her days are still centered around it. When asked about her hobbies, she quickly reverted to talking about the vibration machines.

Though it is O’Leary’s saving grace, vibration therapy is not yet a widely used treatment for cerebral palsy, as research on this type of therapy is lacking. O’Leary had to truly seek out something beyond the traditional model of medicine to find it—something she did because of the medical trauma she experienced as a child, forced into having surgeries she did not want.

“For me. There was a lot of medical trauma, and sometimes that gets to the point where it just…it kind of takes over. You just get triggered with different things,” O’Leary said. Though her parents tended to follow what the doctors told them, O’Leary does not think they handled her disability well, which in turn caused her own inner shame about it. “I moved away from the traditional medical field, because I didn't like the way I was categorized or looked at or spoken about as an object,” O’Leary said.

O’Leary lives in suburban Auckland, New Zealand where there are fewer specialists in CP, so it would either require a long car ride or a trip to Australia to get some medical treatments. She also was born in 1969 when there was less medical research about her condition, which led to some ineffective surgeries when she was a child.

“I am aware that things have changed, but I still feel that it comes from a place of malfunction as opposed to ‘how can we support you’?” O’Leary said.

HOW DOES THE MEDICAL COMMUNITY RESPOND?

There does seem to be a mix of opinions on medical professional’s effectiveness, and awareness and knowledge of CP in adults. More than half of survey participants were not receiving medical care for CP-related symptoms for various reasons, including because of past medical trauma. And 18 out of 31 participants gave low ratings to medical professionals’ awareness of CP.

Seventy-one-year-old John Borland from Hershey, Pennsylvania, has had plenty of experience with doctors as he had over 15 surgeries related to CP. His doctors do not always understand what having CP entails, though.

“I find very few physicians that really know that much about cerebral palsy,” Borland said.

Borland himself is now used to explaining his experiences with CP, as he tries to mentor others with the condition. He always is ready with the same anecdote if anyone asks him what it is like to live with a disability. He will respond, “How do you step off a curb?” and after a few moments of bewilderment and confusion or the usual inane answer of “You just step up”, he will clarify: “Well, I got five ways to step off a curb, and only three of them work.”

Borland sitting in his home. Photo provided by John Borland

John Borland

His family doctor actually started reading medical journals to learn more about the condition from a “technical standpoint.” Borland appreciated the effort, but generally he feels that he has to train doctors “about who I am as opposed to who you think I should be.”

This lack of medical knowledge has caused severe pain for him. He was born with hips that were a little out of alignment, but that abnormality actually allowed for him to walk better in spite of his spasticity and his knees’ lack of flexion. He had to get a hip replacement in 2001 which ended up putting one of his hips in proper alignment, which in turn affected his gait, which then put extra strain on his back and caused back pain. Six years later he had the other hip replaced in an effort to “balance it out,” but that did not stop his back pain which has really limited his mobility in recent years.

“The orthopedic surgeon that did my hip replacements is the best in this area and after he did the left hip…I had like 12 questions that I went in with… and he looked at me and said ‘if you were a normal patient I could give you all kinds of figures, for it's gonna be like this, but because you're such a strange duck, we're gonna learn together’,” Borland said. “It's just that he never did hip replacements on a cerebral palsy patient before.”

WHAT IS BEING DONE?

Almost all survey participants (87%) agreed more research is needed for adults with CP. One source trying to combat the dearth of research specifically for adults with CP is the Cerebral Palsy Research Network. It comprises the “largest and most comprehensive network of hospitals and community members” to provide research for both children and adults, with new studies and informational webinars being posted daily.

“We're doing a lot of work with adults, because there are so few specialty providers that take care of adults with CP,” Paul Gross, one of the founders and president of the Network, said. “And there are so few care providers that understand that if a person has CP as a kid, that while CP is non-progressive, it has additional meaning for them as an adult that you need to be vigilant of.”

The Network was kickstarted in 2015, after Gross was having trouble finding research about different treatment options for his son who has spastic diplegia. By 2018, he was able to use his own network to come up with answers for his son’s mobility issues. Even so, he claimed the availability of specialized adult care is “pretty abysmal.”

“I don't think the state of adult care is very good,” Gross said. “I think there's some great specialty providers that focus on adults and we're trying to figure out ways to take what they do and expand it. We're trying to figure out ways to improve the detection and the treatment of pain. So we got a lot more to do.”

The Cerebral Palsy Research Network also has a feature for a forum called MyCP so those with CP, their families or medical professionals can interact and ask questions. It unites people across the globe and provides an opportunity to get answers on subjects that are under-researched.

“I love the community. I mean, we're there to support each other,” Hancock said about MyCP. Living in rural Canada, she takes every opportunity to benefit from the superior research being done in the US. “You feel heard for a change. You get so tired of not being heard.”

That being said, even the Cerebral Palsy Research Network has a long way to go before it provides enough answers for people like Petrillo, who is really struggling with a decline in mobility.

“I used to pray to God for healing from cerebral palsy. I don’t pray for that anymore,” Petrillo said amid the morning chaos of a Wednesday at Brunch House. “I’m in church and I say my prayers, ‘Can you keep me functional?’”

Once nicknamed the “energizer bunny” by her friends, Petrillo is now exhausted. “The CP is getting bigger than I am. The fight is getting more intense,” she said.

She is the exact reason more research needs to be done, to provide relief, clarity and comfort. To provide hope in increasingly difficult situations.

“I don’t have the ability to fight through it anymore,” Petrillo said. “If I push too hard, my body will give out.”

Petrillo still fights against it as best she can. She travels, though she looks at the ground to ensure she does not trip. She walks on the beach–one of her favorite past times–though she needs to use a walker or someone’s arm for balance. She bakes her favorite recipe of cherry nut cake. She participates in her friends’ book clubs though they don’t have the same taste in books. She takes online classes to become a life coach. And yet this anxious hum is always in the background. She is resistant to giving up her independence more than she already has, for example, by getting a mobility scooter, but that might soon be her reality if her doctors remain without answers. This formidable woman who has been through divorce and loss, who has recovered from a major double hip surgery at 42 (it is unheard of to do both hips at that age) while taking care of her two young sons, who has not identified as disabled for almost three quarters of her life, must come to terms with the unknown.

That is what it is like to be an adult with cerebral palsy in today’s world.