Living with cerebral palsy can be a wild ride, but there are ways to navigate the twists and turns

I remember once asking a client as he walked into my office: “How’s life?” And he said: “Like a roller coaster.” This particular client has cerebral palsy, and the more I think about this condition, the more I’m inclined to agree with his observation.

Cerebral palsy is a roller coaster.

It’s a seemingly unstoppable, out-of-control ride that starts with not knowing how to perform certain functions, followed by either hyper (abnormally high) or hypo (abnormally low) muscle tone. This inability to perform functions then leads to an absence of sensation in the hands and feet, further reducing mobility and function. As you continue to be hurled forward, going up and down on the tracks, your communication and social skills eventually erode. Pretty soon, you are considered disabled.

Parents of children with cerebral palsy are often left in shock by the speed at which their children deteriorate. “What’s happening?” they often ask. “And why is it happening?”

Through today’s’ blog I hope to explain the progression of cerebral palsy in a person’s life – from childhood to the teenaged years and through to adulthood – and to provide some guidance on the different treatment approaches.

The early years

During so-called “normal” development, the nervous system takes the child through the learning process of movement and discovery of the world. At the same time, the parents are unconsciously teaching by example the know-how of every day functions. Children develop the ability to function as they go through each step in the sequence of natural development. Each step prepares the child for the next step. For example, a child starts to move his head first, separating the body’s upper and middle part. Then he starts to roll, which prepares his trunk for the act of sitting. Then he tries to sit, followed by going on his knees and then crawling. These sequence of steps eventually leads to the child standing up and walking.

But for a child with CP, learning function independently is difficult since he is missing certain stages of “normal” development. If one side is affected and rotation movement is limited, then this creates a disruption in developmental progression.  Since he can’t turn his trunk, he can’t separate the movements between upper and lower girdle. As a consequence, there is no weight bearing on the arms and legs, which in its turn triggers problems with sensation and muscle tone. Muscle tone can change.  It can be hypo, but with inappropriate stimulation it can become hyper.

 Given all this, we have to teach the child how to function by taking him through every single step of the function he has to perform. This can be tough, especially in the beginning. But as I said in my first blog – No Pity, No Excuses.

Weight bearing movements normalize muscle tone.  And when a child is taught the proper sequence of steps to complete a function, then the brain learns it and it becomes automatic. It’s just like learning how to drive a car. We weren’t born with the skill, but once we learned and used this skill, it became automatic.  

Once function improves, the child starts to discover the world, which leads to improvements in mental and social skills.  This, in a nutshell, is my treatment approach to children with cerebral palsy, and it’s based on a fundamental and unshakeable philosophy: Sky’s the limit! We can gain a lot, if not everything.

The teenaged years

As the child gets older, the body goes through the certain changes. This is when we have to be really careful. Because of hormonal change and growth just before and during the teenaged years, we can see increase in the tone, change in the spine curvature (scoliosis), and even deterioration in the function.

For teenagers with CP, the best approach is to maintain normal, independent function while continuing to build new ones. Remember: if they don’t use it, they lose it.

CP in adults

As we get older, we tend to move less than we did when we were younger. The same holds true for adults with CP, but with one additional issue: If they don’t use it, they’ll lose it. Remember?  The muscle tone goes hyper, limited the ability to move and function. This causes the body to compensate and leads to abnormal movements. To avoid this, adults with CP need to maintain functional mobility and improve everyday function.

In addition, it is really important to communicate with treatment provider, since the treatment does not need to be based on exercises but on the person’s functional and daily needs. For example, if this person needs to cook and climb the stairs regularly, then the treatment should be focused on maintaining and strengthening the ability to perform these functions.

As health professionals and caregivers, and as family members who simply want to see our loved ones succeed in life, our role is to listen and help children with neurological disorders understand their bodies and learn what they need to do to gain independence in their daily lives. I hope this post helps you better guide your kids through the roller coaster ride of cerebral palsy. And remember, I’m on the ride with you, ready to answer any questions you may have about CP or other neurological disorders.

Natan

About the author

Natan Gendelman has written 274 articles for Enabled Kids.

Natan Gendelman is licensed as a physical therapist in Russia and Israel. After moving to Canada, he was certified as a kinesiologist and osteopathy manual practitioner. Natan has more than 20 years of experience providing rehabilitation and treatment for conditions such as cerebral palsy, autism, Down syndrome, pediatric stroke and acquired brain injury. He is the founder and director of Health in Motion Rehabilitation, a Toronto-based clinic whose main objective is to teach their patients the independence necessary for success in their daily lives.

One thought on “Living with cerebral palsy can be a wild ride, but there are ways to navigate the twists and turns

  1. Hi Natan,

    I want to thank you for creating this website. My daughter is almost 6 years old with cerebral palsy. She is in a wheelchair. She cannot sit, stand or walk independently. I am very concerned for her future. I have been reading your blogs and I agree that the therapists exercises may help her get stronger for the period of time that she goes to them, but if our money runs out and she cannot get a lot of therapy, she just loses everything and is back to the way she was before. I am very frustrated because she is a beautiful, bright and happy little girl, who wants to have friends and sleepovers, but the way she is functioning now, kids pretty much stay away from her.

    We were even considering going to a clinic in Germany that does stem cell therapy, whereby they extract the child’s own stem cells from their bone marrow in the hip and then insert it in the spinal cord, the idea being that it travels to the brain and starts to repair the damage that was done at birth (I would love to know your thoughts on this).

    I feel that it is sooo unfair that, through no fault of our daughter or us, we now have to spend thousands upon thousands of dollars to provide therapy that never really changes anything for her, it just puts us into more and more debt. I would love to know your thoughts on this.

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