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Cerebral Palsy Message Board


Cerebral Palsy Board Index


Recently Diagnosed
Feb 22, 2001
Many doctors working with cerebral palsy deal with the idea of telling a parent that their (often very young) child has CP. Not the case this time.

At the age of 35, (and after 15 years active duty in the US Navy) I was diagnosed with spastic diplegia as a result of CP. I have been living with CP my entire life however I was completely unaware I had any abnormality.

The first clue was a friend telling me he spotted me from 1/4 mile away JUST by the way I walk. That was 13 years ago. Since then, I have people ask, "What'd ya do to your leg?" and they would tell me that I was limping, and I would ask, "Which leg?" Basically I drag my right foot.

I am average height 5' 9.5" (176cm) and average weight 165 lb (75kg) so I describe myself to strangers as, "Extra Medium" I am the second born identical twin and I am left handed. We both have very above average IQ's (above 130). Since CP is not genetic nor hereditary he would have to be diagnosed himself. He has something though and it is very similar to what I have. I am not a fast runner, but I can run very long distances at a slow pace. I walk when I golf.

What is unusual is my shoe size. The closest I can find is 8 EEEE. That fits length and the toe but the heel is very loose.

The first doctor I went to see about my walk basically said, "Go get shoes that fit" and sent me on my way (2 years ago).

If it were not for my military service, I would have no reason to find out what is wrong with me. We measure physical fitness as distance traveled over time. I never scored better than "good" and now my legs do not allow me to pass this test. I sought out more into my condition, and was referred to podiatry and neurology.

Podiatry noticed things only slightly out of normal (right leg is 1/4" longer) and slightly high arches but nothing that points to my walking.

Neurology did a lot of sensory tests including two MRIs (lumbar and brain) and an EMG. I have one of the most intensly tested and fully functional sensory nervous systems. With everything appearing normal, he left me no closer to a diagnosis.

I then asked for an orthopaedic specialist. After a short series of reflex tests and watching me walk, he had it down to three possibilities and two of them were very unlikely. I have a clonus of 4-5 beats and a reflex on the inner knee that should not be there. He put me on 75mg Dantrium and had me do a cervical MRI to rule out everything except CP. That also appeared normal. My clonus is reduced to 2 beats. I am now taking 150mg dantrium. My walking is better. The spastic muscles have been slowed down, and the previously underutilized muscles are now getting excercize they never got before. I have to relearn how to walk.

The only information I can find is:
1. Recognization of symptoms in young children.
2. Decisions on how to rear children and ideas as to how to educate them.
3. Adults who for as long as they knew had CP, their experiences, their triumphs and their optimism.
4. What CP is, and what CP is not.
5. Treatments (Medication, Surgery, and physical therapy) for young children.

About all I know is that nothing will get worse. It sure would have been nice to understand why I was always picked last on the playground, why I was picked on, was constantly accused of being gay which led to avoiding girls like the plague. (Could lead to getting off topic)

Even though I used a "?" icon, my question should be, what should my questions be? For instance, "How do I tell my parents I'm one of 'Jerry's Kids'?" How many people with CP were told by their doctors, and didn't grow up knowing it?

[This message has been edited by Rich_Jr (edited 02-22-2001).]

[This message has been edited by Rich_Jr (edited 02-22-2001).]

[This message has been edited by Rich_Jr (edited 03-21-2001).]
[QUOTE=Rich_Jr]Many doctors working with cerebral palsy deal with the idea of telling a parent that their (often very young) child has CP. Not the case this time.

At the age of 35, (and after 15 years active duty in the US Navy) I was diagnosed with spastic diplegia as a result of CP. I have been living with CP my entire life however I was completely unaware I had any abnormality.

The first clue was a friend telling me he spotted me from 1/4 mile away JUST by the way I walk. That was 13 years ago. Since then, I have people ask, "What'd ya do to your leg?" and they would tell me that I was limping, and I would ask, "Which leg?" Basically I drag my right foot.

I am average height 5' 9.5" (176cm) and average weight 165 lb (75kg) so I describe myself to strangers as, "Extra Medium" I am the second born identical twin and I am left handed. We both have very above average IQ's (above 130). Since CP is not genetic nor hereditary he would have to be diagnosed himself. He has something though and it is very similar to what I have. I am not a fast runner, but I can run very long distances at a slow pace. I walk when I golf.

What is unusual is my shoe size. The closest I can find is 8 EEEE. That fits length and the toe but the heel is very loose.

The first doctor I went to see about my walk basically said, "Go get shoes that fit" and sent me on my way (2 years ago).

If it were not for my military service, I would have no reason to find out what is wrong with me. We measure physical fitness as distance traveled over time. I never scored better than "good" and now my legs do not allow me to pass this test. I sought out more into my condition, and was referred to podiatry and neurology.

Podiatry noticed things only slightly out of normal (right leg is 1/4" longer) and slightly high arches but nothing that points to my walking.

Neurology did a lot of sensory tests including two MRIs (lumbar and brain) and an EMG. I have one of the most intensly tested and fully functional sensory nervous systems. With everything appearing normal, he left me no closer to a diagnosis.

I then asked for an orthopaedic specialist. After a short series of reflex tests and watching me walk, he had it down to three possibilities and two of them were very unlikely. I have a clonus of 4-5 beats and a reflex on the inner knee that should not be there. He put me on 75mg Dantrium and had me do a cervical MRI to rule out everything except CP. That also appeared normal. My clonus is reduced to 2 beats. I am now taking 150mg dantrium. My walking is better. The spastic muscles have been slowed down, and the previously underutilized muscles are now getting excercize they never got before. I have to relearn how to walk.

The only information I can find is:
1. Recognization of symptoms in young children.
2. Decisions on how to rear children and ideas as to how to educate them.
3. Adults who for as long as they knew had CP, their experiences, their triumphs and their optimism.
4. What CP is, and what CP is not.
5. Treatments (Medication, Surgery, and physical therapy) for young children.

About all I know is that nothing will get worse. It sure would have been nice to understand why I was always picked last on the playground, why I was picked on, was constantly accused of being gay which led to avoiding girls like the plague. (Could lead to getting off topic)

Even though I used a "?" icon, my question should be, what should my questions be? For instance, "How do I tell my parents I'm one of 'Jerry's Kids'?" How many people with CP were told by their doctors, and didn't grow up knowing it?



This may seem rude Rich,
but consider yourself very lucky!

Most of us on this site would have given our right arm to have had the life you've had. And Jerry's Kids are all Muscular Dystrophy and related conditions kids! CP is not related to these although you can have CP and MD together. Think of CP as brain damage to a brain that was once normal. Brain damage that was caused by a trauma, and not by a genetic agent. CP had nothing to do with you avoiding girls! How many kids grew up with CP and didn't know it? Not many, I assure you! I can't help but chuckle at your questions, I don't mean to belittle you, honestly. You are an adult, there is not much you need to do or even know now. Just do what makes you comfortable and don't worry about it. Afterall, you didn't have a stroke. CP doesn't get worse, our bodies might just wear out a little faster with CP, and so might yours. If you're worried about getting worse, you're just going to age like all of us. You're grown and although physical thearpy might be beneficial, you can take charge and do what you need to. You don't need your hand held, trust me.





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