Cerebral Palsy in Twins

It was July 1980, and my 30 year old mother went into premature labor. She already had a 10 year old girl and a 7 year old boy, but this baby was "a happy accident”.

“Surprise” the doctor told her it looks like twins.

My mother was shocked; my father was excited. Those were the days when ultrasounds were not done regularly unless there was an issue. Hours later after an emergency C-section we were born.

My sister and I were born very premature, and given a slim chance of survival. We weighed only 2lbs each which was a very low birth weight to survive at that time. My father could hold us easily with one baby in each hand. We were skinny,red,and covered in tubes.

Although we looked very much alike we were fraternal twins not identical twins. Fraternal means we were conceived from two seperate individually fertilized eggs. Whereas Identical is from one egg splitting apart into two embryos.

Miraculously we pulled through and eventually went home after a few weeks in Intensive care.

But it was soon apparent something was wrong. I was not reaching the same milestones as my sister. I was not rolling, crawling, walking…

After being brought to a specialist. I was finally diagnosed with Cerebral Palsy or CP.

This was likely caused because I was premature, and at some point before or during delivery my brain was deprived of oxygen, causing permanent brain damage.

What is Cerebral Palsy?

Cerebral palsy is condition, sometimes thought of as a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed.

There is no cure for cerebral palsy. However it is not progressive. The goal of treatment is to help the person be as independent as possible.

The most common form is spastic CP, symptoms of spastic cerebral include:

• Muscles that are very tight and do not stretch. They may tighten up even more over time.
• Abnormal walk (gait): arms tucked in toward the sides, knees crossed or touching, legs make "scissors" movements, walking on the toes.
• Joints are tight and do not open up all the way (called joint contracture).
• Muscle weakness or loss of movement in a group of muscles.

The symptoms may affect one arm or leg, one side of the body, both legs, and both arms and legs. I have spastic diplegia which means both of my legs are affected, and there is also some upper body affects as well.

My Condition

I was awkward, and had poor coordination. I had many surgeries and stays in the hospital as well as many hours of physical therapy to improve my condition.

I finally walked at age 4 with the help of leg braces and a walker. My parents devoted much time to enrolling me in therapeutic programs and bringing me to specialists. I had physical therapy every week. I was given extra care and attention.

Raising twins is hard enough never mind if one is disabled. I am sure my parents were overwhelmed. As a child it was a little confusing. I thought “why can’t I be fixed?” And like most children I believed in some degree of magic. If I wished hard enough could I be normal? Maybe if I just thought about it hard enough I could jump or walk up that step.

I was also painfully shy and never spoke to anyone I didn’t know well. Socially it was hard to make friends. My twin sister was more outgoing so I became friends with her friends.

Today I can walk unaided without a walker or crutches, however I do still use ankle braces. I am 30 years old myself now and I can’t say that I am completely comfortable with my disability. It is not so severe that it is immediately recognizable to strangers.

I have been asked if “Oh did you hurt your leg.?” Also I have been accused of being drunk since sometimes my gait may resemble a drunken stagger. It is not so common that you can say “I have Cerebral Palsy” and it will be immediately understood what that is, or that you are not necessarily mentally impaired.

It's Kind of a Funny Story

I have had some funny encounters with people who are curious about my disability. For example I went to get an oil change with a friend and when I walked to the register to pay. The cashier said casually said “So scoliosis” as if he was asking cash or credit.

”Excuse me” I said.

“So you have Scoliosis” he said

“Umm no…I don’t” I said.

“Oh” he said and just stared.

I finally offered “I have “Cerebral Palsy”.

“Oh okay” he said blankly “Well $29.95 for the oil change”.

My friend was nearby and when we walked out she asked “What did he ask you”? I told her once we got in the car, and we laughed all the way home.

"Sooo…… scoliosis”?

Another funny thing is when you know people for along time they sometimes literally forget that you are disabled. I remember me and some college friends were piled in a car going to the movies. The parking lot was crowded and there were no close spots. I said “that’s ok just park in the Handicapped spot.”

My friend asked “who’s handicapped” ?

“Ummm me…” I said and we all cracked up laughing until we cried.

(I guess you had to be there).

I am grateful as an adult that I can live independently. I can walk, swim, write, talk, type…

I am grateful to my parents for all they provided. And the many doctors, nurses, and physical therapist that made me reach my physical potential.