-----Original Message-----
From: Linda Walker <[log in to unmask]>
To: [log in to unmask]
Sent: Thu, 31 Jul 2008 3:00 pm
Subject: Re: Dealing with the public if you have CP
Hello,
I had the stroke. it was a mini-stroke and the impact was on top of
pre-existing CP and psychiatric issues. a long long long story. the
stroke was not related to CP, but to other things. can I email you
offlist?
it is actually very complicated and I think I am going to need to get
medical records to understand it. I was told that these records would
be kept at Johns Hopkins, and b/c a doctor there took a personal
interest in me, they would be kept. this was about 25 years ago.
it's very difficult for me to know what is "caused" by what in terms of
CP vs. stroke vs. childhood abuse, etc.......and this is the first time
that I've been able to consciously discuss all this. one problem is
lack of insight:
Anosognosia
From Wikipedia, the free encyclopedia
ICD-9 780.9
Anosognosia is a condition in which a person who suffers disability due
to brain injury seems unaware of or denies the existence of his or her
handicap. This may include unawareness of quite dramatic impairments,
such as blindness or paralysis. It was first named by neurologist
Joseph Babinski in 1914, although relatively little has been discovered
about the cause of the condition since its initial identification. The
word comes from the Greek words "nosos" disease and "gnosis" knowledge.
--
anosognosia can come from both "physical" and "psychological" problems.
in fact I was told that a lot of doctors don't distinguish those.
that is they know some problems are due to brain injury and some for
psychological reasons, however, there is very extensive overlap in the
way the symptoms present themselves.
my issues have included:
PTSD, a mood disturbance that is like bipolar disorder but not that
severe, migraines that don't respond to medication, "visual neglect" on
the right hand side of my body, where objects to the right, I would see
them but they would not register, sensory integration issues (sound
sensitivity and etc)...
difficulty speaking due to aphasia and apraxia, coordination problems,
fatigue, weakness, a washed-out feeling, lack of insight, difficulty
with everyday tasks like manipulating silverware, and trouble with
vision. and balance problems.
I am now MUCH better than I used to be. some of these problems were
due to the toxic effects of fear and some were due to abuse and other
psychological things. and some were due to brain issues.
I had a lot of determination and spent a lot of time in therapy and
doing things like emailing, outside of therapy. this took a LOT of
work. as in, I deteriorated after 9/11 and then I have been working
but spent zillions of hours on treatment - and I'd had a lot of
treatment before that.
I am not saying there is a cure for CP. I have an unusual type of CP,
ataxia, and it is an unusual type of that with fluctuating muscle tone.
but a lot of my problems were not from CP. they were from this other
stuff.
basically, my brain has been a complicated mess but there is treatment
for it. it is something that is currently very very very very very
unusual.
another thing is, unlike almost everyone with CP, I don't have unusual
muscle tone. I was told that technically I have CP b/c I was premature
and damage to my cerebellum has affected motor skills and other things
when I was born. but unlike almost everyone with CP, I don't have
muscle tone issues except with fluctuating spasticity and weakness when
I am upset.
so that - almost the vast majority of what people say about CP does not
apply to me. in terms of how they are affected. except that motor
skills are very difficult.
that having been said, I know what it is like to live this life where
other people say and do stupid things based on what they THINK or FEAR
my capabilities are.
I could post to the list but I don't know if that's too much about me?
I was in physical therapy from a very young age.
take care,
Mary Katherine
----
Linda wrote:
Kendall,
What caused the stroke? This is very interesting exactly what I
joined to fine out. We still help Case dress because it is so
difficult for him and why should he spend so much time at it. OTOH it
does stretch when he has to manipulate his socks and what not. I have
been afraid to bring this up with his parents but I am wondering if
his heart needs to be checked as I am concerned about how strong it is.
The therapists want him back in DAFO's which he has not worn since
his operation. The person who does Anat Baniel thinks the DAFO's are
not good because they stop his sensory perception on his feet.
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