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Subject:
From:
"Barber, Kenneth L." <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Fri, 3 May 2002 12:28:00 -0400
Content-Type:
text/plain
Parts/Attachments:
text/plain (415 lines)
   bobby, you know this paralells my experience very closely. the worse case
stuff. hey, my grandmother was born and lived in hillsboro texas until she
was 12.
  i never wore a helmet, but, i nearly beat my brains out falling. still got
scars on my forehead. maybe, thinking about it, i did beat my brains out.
ha, ha.
  my kids thought me having a spasm and throwing a cup of hot coffee
straight up was funny.
this is interesting reading bobby. i can't wait to get another part.

-----Original Message-----
From: BG Greer, PhD [mailto:[log in to unmask]]
Sent: Friday, May 03, 2002 12:05 PM
To: [log in to unmask]
Subject: Re: CP (Part II)


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Deri,

    This is an update on the "Epistle" updated.

Bobby

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<P><BR>
<BR>
     MY EARLY YEARS<BR>
<BR>
<BR>
 Cerebral palsy(CP) is a generic term which encompasses many types of
condit=
ions. The term scares the hell out of some people, but, in fact, is a
group=20=
of disorders which affects the brain&#146;s ability to control the motor
fun=
ctions of the body. Since about ninety percent of cases of cerebral palsy
oc=
curs as a result of damage to the brain before birth; functions other than
m=
otor functions can be affected. These other affected functions might, but
al=
ways, include mental retardation, visual problems, hearing problems,
epileps=
y and learning disabilities. These latter conditions are termed
&#147;associ=
ated disorders&#148;. I was born with cerebral palsy. When a new born is
sus=
pected of having cerebral palsy, physicians will often paint a &#147;worse
c=
ase scenario&#148; for the traumatized parents by telling them their
newborn=
 &#147;bundle of joy&#148; most likely will not be able to walk, to talk,
wi=
ll be retarded, blind or deaf or both. This way the physician&#146;s ass
is=20=
covered. And that is what happened to my parents when I was born. It has
als=
o happened to just about every individual with cerebral palsy I have
talked=20=
to about this subject. These same physicians later wonder why such parents
a=
re hostile to persons in the medical professions. In defense of such
profess=
ionals, often the case scenario they painted does not pan out and said
paren=
ts are grateful to have child who can talk, walk, is not retarded, etc.
This=
 &#147;cover your ass&#148; method then pays off in a twisted sort of
way.<B=
R>
 The physician who delivered me was a family physician in rural north
centra=
l Texas who had been my mother&#146;s physician all her life and had
deliver=
ed my older brother, Dan, with no complications. This is to say he was not
a=
 total screw up. In fact,<BR>
he took my dilemma quite personally. He even went to a medical conference
in=
 Chicago to find out more about cerebral palsy in order to more
competently=20=
traumatize my parents with the nature of CP and its associated
disorders.<BR=
>
 Speaking of my parents, they met while going to high school in Milford,
Tex=
as.<BR>
My dad was captain of the football team and my mom was the daughter of a
dea=
con in the local church. My dad&#146;s was named R.L. and my mom&#146;s
was=20=
Geneva Alice Goodman.  One thing I learned after I went to school was
never=20=
give an off spring an initial name! The teachers would ask, &#147;What is
yo=
ur father&#146;s name?&#148; and I would say &#147;R.L.&#148; and they
would=
 asked, &#147;Yes, but what&#146;s his full name?&#148; and I would
response=
, &#147;R.L.&#148;. They would then give me a look like I had one of those
&=
#147;associated disorders&#148; I mentioned earlier, namely, mental
retardat=
ion.<BR>
 My parents married right out high school in 1928 in the beginning of the
Gr=
eat Depression. They lived on a farm outside Hillboro, right north of
Waco.=20=
Dad share cropped, tinkered with a few old farm tractors which would not
run=
 and also worked at a cotton gin. In 1934, my brother Dan was born. He was
a=
 hyperactive little bundle of energy who would &#147;escape&#148; and get
lo=
st among the cotton plants or climb to tops of windmills at 2 years of
age.=20=
In l937, I was born. Since my mom had had a kidney infection just prior to
m=
y birth and since her physician, whose name was Killian, expected her to
hav=
e a difficult birth, Dad drove Mom to Waxahachie which had a larger
hospital=
 and better facilities. Killian used high forceps in delivering me and
blame=
d himself for my cyanotic(blue) complexion and both of my broken arms. He
su=
spect I had CP and that&#146;s when he &#147;covered his ass&#148; by
giving=
 my parents the worst case scenario speech. I had great difficulty
breathing=
 on my own and a nurse who was said to have the &#147;hots&#148; for one
of=20=
Dad&#146;s brothers, gave me contrasting hot and cold baths for about 18
hou=
rs straight. She must have had it bad for Uncle Harry, but I will be
forever=
 grateful to her, no matter=12what her motivation.<BR>
 Let me say here, that as attorney say, everything I state about my early
ye=
ars is &#147;hear say evidence&#148;. I have very few memories of my early
l=
ife. Most of what I am writing here came from my Mom. I am just now
realizin=
g how distorted that view point may be. I do have a few memories of
selected=
 things when I was two or three. When I was two or three my family moved
to=20=
San Antonio. Dad got a job working on farm tractors and we lived in a
small=20=
apartment across the street from where he worked. I have about three
memorie=
s of this period. One was when my brother Dan&#146;s pajamas<BR>
caught fire and my Dad had to put out the flames with his hands. All I
remem=
ber was Dan running and crying and Dad chasing after him. In my mind I
thoug=
ht my Dad was hurting him, when in fact, he caught Dan and put the flames
ou=
t with his hands. After that, Mom had to stay in the hospital with my
brothe=
r and I went to work with Dad, since we did not have the money for a baby
si=
tter or day care for me. The tractor dealership where my father worked was
a=
 small family business and the wife of the owner and her daughter in law
kep=
t books and  ran the office there. These women were my surrogate mothers
whi=
le Dan was in the hospital. These surrogate mothers must have done a great
j=
ob caring for me, since I&#146;ve always associated the smell of a tractor
s=
hop with warmth and safety. <BR>
 The other memory I have of that time was my brother rolling an old tire
dow=
n a sidewalk and I got in front of it. The tire hit me in the back and
havin=
g no balance to speak of I fell  and landed on my forehead. CP&#146;s
don&#1=
46;t know how to fall since they can not reach out and break the fall with
t=
heir arms and hands. In this department, I was a very slow learner. I
rememb=
er getting up and blood running down my face. My parents took me to the
emer=
gency room and I got stitches(sutures) in my forehead. They say that
afterno=
on after I had sutures I fell again and was returned to the emergency room
f=
or another stitching job. Throughout early childhood, I kept falling and
lan=
ding on the same spot on my forehead. Later, a neurologist recommended
that=20=
my parents buy me something like a football helmet, so I could wear it to
pr=
event further damage to what my father called my &#147;forward landing
gear&=
#148;! When I was adult with children, my dad told my children the helmet
st=
ory much to my chagrin. My kids thought it was hysterically funny. They
pict=
ured their father wobbling down the street with a football helmet. Later
my=20=
daughter got a Tabby cat, named it Bobby, and fashioned a small helmet for
B=
obby. <BR>
 Around this time my mother discovered a charity clinic for persons with
ser=
ious<BR>
physical problems. While taking me there, she found a neurologist,
actually=20=
a neurosurgeon named Lewis Helfer. Helfer was fresh out of residency in
neur=
osurgery in Illinois and was delighted to find a young CP who he could use
t=
o train interns and other medical personnel regarding what CP looks like
in=20=
a young child. My Mom says he would have me walk back and forth in front
of=20=
such personnel as he pointed out the characteristic of CP. He also told my
M=
om I had the spastic type of cerebral palsy; and that from taking history
of=
 her pregnancy and delivery, told her that Killian probably did not injury
m=
e at birth. Rather, he concluded that my CP was the result of Mom&#146;s
kid=
ney infection just prior to my birth.<BR>
 Spastic is the most common type of cerebral palsy. The other two
&#147;pure=
&#148; types are athetoid and ataxic. Anatomically, they are different due
t=
o the area of insult(damage) is located in different parts of the motor
area=
s of the brain. They pretty much look alike to lay people, but they have
dif=
ferent relaxes and motor characteristics to a medical professional train
in=20=
neurology. Other than neurologists, some orthopedic specialists and
physiatr=
ists(trained in physical medicine); most physicians know less about CP
than=20=
the average lay person. This I have discovered as I explain CP 101 to some
i=
nternist, cardiologist, etc. What gripes me is after my explaining CP 101,
I=
 still have the pay<I> them</I>. They should be paying me!<BR>
 Basically, spasticity results in a screw up in the brain&#146;s ability
to=20=
get the right signals to the right muscles. Just about every voluntary
muscl=
e group has another muscle which performs the opposite function. For
example=
, in the upper arm, the biceps contract to bring the lower arm up.
However,=20=
in order for the biceps to do this in a smooth, orderly fashion; the
opposin=
g muscle group, the triceps, must relax. Technically, this procedure is
call=
ed reciprocal innervation. In spastic CP this  mechanism doesn&#146;t
quite=
 work the way it is supposed to work. Innervation to contract go to both
opp=
osing muscle groups and the result is a jerky looking movement. The above
is=
, of course, an over simplification and someone trained in neurophysiology
w=
ho take issue with it. <BR>
 Helfer became my personal physician soon after this. He never did any
tradi=
tional medical procedures on me, lake surgery and/or fitting me with
braces.=
 Rather, he advised my mother on everyday things she might do to aid and
ass=
ist my development. For example, I had trouble coordinating my diaphragm
in=20=
relation to my speech. Helfer recommended singing lessons. Also, at the
time=
 he was a big enthusiast of promoting good neurological development
through=20=
increased Vitamin B complex. One prime source was malt they used to brew
bee=
r with, so my good Baptist mother would make periodic pilgrimages to the
Pea=
rl Brewery for yeast malt to get me my Vitamin B complex fix. I don&#146;t
k=
now if I ever really benefited from this regimen, but much later in my
life,=
 I would cynically blame this good neurologist for my predilection to
beer.=20=
  <BR>
<BR>
 My dad got a better job and we moved to another place near downtown San
Ant=
onio. We lived in a private apartment for a while and then moved to a
newly=20=
opened public housing project called Victoria Courts. This was in the
early=20=
&#145;40&#146;s. This housing project was part of FDR&#146;s New Deal and
wa=
s a nice place to live for a while. As with most housing projects in
cities,=
 this one deteriorated into a barrio and a center for the crack trade in
the=
 &#145;80&#146;s and &#145;90&#146;s and was torn down. I have many
recollec=
tions of this time. The apartments were in buildings containing about
eight=20=
family dwellings, four on each end of the building. On each end, there
were=20=
two downstairs apartments and two up stairs.  The building were rather
stark=
 in structure, consisting of concrete tiles, cement staircases and steel
rai=
lings and casement windows. I remember scooting down these stairs on my
butt=
, due to my poor balance. I had not recalled this part of my past until I
sa=
w the movie, &#147;My Left Foot&#148; where Christie Brown scooted down
the=20=
stairs in his family&#146;s flat in Dublin.<BR>
<BR>
 I learned several things during this time we lived in Victoria courts.
Firs=
t, I learned it is sometime very painful to be a &#147;hero&#148;&gt; I
lear=
ned this by going to a playground football game with my brother. I
pestered=20=
the older boys to let me play and they relented. I was on defense and when
t=
he ball was snapped, I squatted and saw a bunch of legs. One pair came
churn=
ing at me and I reached and grabbed them. The body attached to the legs
came=
 toppling down on me as did several other tacklers. I felt crushed and
could=
 not catch my breath. Everybody congratulated and begged me to play as I
hob=
bled off the field. It is painful to be a hero. <BR>
<BR>
 I also began to admire and acquire  my Dad&#146;s cynical sense of humor.
A=
s I said the buildings we lived in contained eight family. This was at the
p=
eak of WW II and soldiers were all over San Antonio. Most civilian men,
like=
 my Dad, worked during the day. Some of the women at the other end of our
bu=
ilding :entertained the troops during the day. I didn&#146;t get the full
me=
aning of it. but when Dad would ask my Mom how things went at the
&#147;USO&=
#148; that day, Mom would get upset and Dad would laugh and I learned
cynici=
sm, could be fun. It was good to be twisted. My Mom was from a family of
dea=
cons and my Dad came from the &#147;wilder&#148; side. He had buddies from
M=
ilford living in San Antonio and they taught it was fun to get drunk,
becaus=
e Mom would get upset and I was learning quickly that most things that
upset=
 my Mom were funny to me. There was one particular incident where
Dad&#146;s=
 buddies came by our=12apartment drunk. They had been, for some ungodly
reas=
on, to a Reptile Farm. One of Dad&#146;s friend thought it would be fun to
s=
teal a poisonous snake so he puts in his pocket and come over to see his
&#1=
47;ol&#146; buddy R.L.&#148;! I never figured out why the snake never bit
hi=
m, but all hell broke loose when he bragged about what he had done. R.L.
was=
 terrified of snakes! I learned people do wield, funny things when drunk.
<B=
R>
<BR>
 Unfortunately I learned of violence, too. San Antonio tended to break out
d=
runk on the weekends with all the military men in town. Our place was not
th=
at far from downtown and so the &#147;fun&#148; would often spill over
into=20=
out neighborhood. On particular morning I remember hearing yelling,
cursing=20=
and a &#147;crack. crack&#148; sound. One soldier was beating
another&#146;s=
 head against the curb out side our bed room window. I also remember a
rabid=
 dog in the neighborhood , one day and a policeman standing over it
shooting=
 several times.I found the would could be scary.</P>
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