April 22, 2012

What does Cerebral Palsy Mean for Charlie?

 Hello Dear Friends and Charlie fans,

Its been a while since we updated you here on Charlie's progress and recent medical tests.  Charlie has had a fantastic few weeks, connecting verbally and visually with family and friends, reaching out for objects with both his right and left hands, and using sign language to communicate with his family and therapists.

As many of you already know, Charlie's doctors are moving ahead with a general diagnosis of Cerebral Palsy as a result of his stroke.  We've received lots of questions and emails about what this new diagnosis means for Charlie.  We're still learning about it ourselves, but here is some information that might help you better understand what Charlie is looking at.

Cerebral palsy (CP) is an umbrella term for a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy is a static condition, but can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.  CP is usually caused by brain damage that occurs before or during a child's birth (as in Charlie's case), or during the first 3 to 5 years of a child's life. There is no cure for CP.  Charlie will never outgrow it.  However, treatment, therapy, special equipment, and, in some cases, surgery can help a child who is living with the condition.

Cerebral palsy affects muscle control and coordination, so even simple movements like standing still — are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP.  The good news is that Cerebral palsy does not get worse over time.

Charlie's Cerebral Palsy has been narrowed to a condition called hemiparesis - a very common condition found in children who have suffered a stroke.  Hemiparesis is muscle weakness on only one side of the body. When hemiparesis happens as a result of a stroke, it commonly involves muscles in the face, arm, and leg as we've seen with Charlie.  People with hemiparesis often have difficulties maintaining their balance due to limb weaknesses leading to an inability to properly shift body weight. This makes performing everyday activities such as dressing, eating, grabbing objects, or using the bathroom more difficult.  Left-sided hemiparesis, like Charlie has, involves injury to the right side of a person's brain, which controls learning processes, certain types of behavior, and non-verbal communication. Injury to this area of a person's brain may also cause them to talk excessively, have short attention spans, and have problems with short-term memory.

So as you can tell, this is still very much a "wait and see" situation for Charlie.  We are hopeful that through rigorous therapy and the use of adaptive equipment, we will be able to help Charlie live as full and as vibrant a life as possible.  And by the looks of it, he's well on his way!

As always, thank you for your amazing support for Charlie!


  1. One of the most intelligent women I know has CP and is in fact an English professor at a nearby college. Just last weekend on her facebook wall she announced her engagement.
    Charlie has a full, full life ahead of him.

  2. The way you are moving along this marathon is inspiring! So many of my friends who connect via Facebook express admiration for the way you move through the massive information and medical workups and resulting 'let's see what Charlie does next' steps along the way. At the same time you and Jack and Walker and Charlie travel along loving and enjoying life together. Know that there are lots and lots of us who love you and want to support in any way possible. Thank you for the clear information! xoxoxoxoxo

  3. My good friend who has CP just got her Master's degree last summer, she works fulltime (and has for years) at Richland College as The Head of Technical theater, she is an amazing woman. She too had amazing parents who didn't ever give up....just like Charlie. I, by the way, am a hopeless idiot for not getting back in touch with you. My life has calmed and changed quite considerably in recent weeks and I would love to meet up, as I had hoped to do so many months ago. Will send you an FB message. Emily