Linda,
I was 10 or 11 (in 4th grade, anyway). John (my brother) finally got
sick of me not being able to keep up. It was basically the same thing
with driving - he got tired of having to give me rides. When I learned
to ride a bike, I had balance problems, and spasticity and tightness in
my legs (mostly the right). My CP is secondary to hydrocephalus, and
when I was 16, I had another surgery for the hydrocephalus that resulted
in left hemiplegia. Unfortunately, I can't ride a two-wheeler any more.
My wife also has CP, and has ridden a three wheeled bike. We're looking
at getting a three wheeled recumbent bike, or bikes, as we need to do
something to stay in better shape.
Kendall Corbett
An unreasonable man (but my wife says that's redundant!)
The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all
progress depends on the unreasonable man.
-George Bernard Shaw 1856-1950
-----Original Message-----
From: Bobby Greer [mailto:[log in to unmask]]
Sent: Thursday, June 16, 2005 10:20 PM
To: [log in to unmask]
Subject: Re: new to list introduction
Linda
I am 67 yrs old, spastic quuad and a retired college professor. I
learned to a 3 wheeled bike fashioned by my father who was a mechanic.
Ifinally got to where I could tilt the third wheel up and ride two
wheeled.
I was about 10 yrs old.
Bobby
----- Original Message -----
From: "Linda Walker" <[log in to unmask]>
Newsgroups: bit.listserv.c-palsy
To: <[log in to unmask]>
Sent: Thursday, June 16, 2005 10:17 PM
Subject: Re: new to list introduction
> Wow! how old were you when you learned to ride a two wheeler? That is
one
> of my goals with Case but he is still learning the 3 wheels. It seems
> several people here understand about the looking down but in tons of
> therapy and discussing falling when running no one ever mentioned
this.
> Strange!
> When my son was in college he took up hang gliding, very similar to
sky
> diving. one of his friends fell to earth and they had to race him to
the
> hospital and he has never totally recovered from the brain injury. An
old
> boyfriend of mine was a sky diver who broke his leg and it never
healed
> properly and he was in a long leg cast for over a year and became
addicted
> to narcotics for the pain. Just food for thought. Although I love to
> challenge myself physically, I don't like to do things that can cause
> permanent injury as my view is that life already throws us enough bad
> curves as is. I also used to go skydiving with friends but alwasy
stayed
on
> the ground watching them float down to lunch. This was at the Han
airstrip
> on Maui, HI and was quite fun. As a single parent I felt I could not
risk
> something that would possibly leave me unable to care for them even
for a
> short time.
>
> All the best,
>
> Linda
>
>
> At 12:06 PM 6/16/2005, you wrote:
> >Linda,
> >
> >=20
> >
> >Older brothers can be a powerful motivator! I have a brother who's
51
> >weeks older than I am, and he first taught me to ride a two wheeled
> >bike, and to drive. =20
> >
> >=20
> >
> >I've worked in the disability field for the last 17 years, and my
first
> >job in the field out of college drilled into us a concept called "the
> >dignity of risk." Basically, dignity of risk is letting a person
with a
> >disability (or anyone, for that matter) try things they want to
(taking
> >appropriate safety precautions, of course), realizing there will be
some
> >that work well, and others that don't. But, a person learning that
an
> >activity might not be a good "fit" for them through experience is
> >usually better than being told "you can't do that because you have
X."
> >Case's doctors may recommend activities that he not do, and those
> >recommendations are probably good ideas, but, as it sounds that
you're
> >already doing, help him learn to, and let him do try the things that
he
> >wants to do.
> >
> >=20
> >
> >Those are easy things for me to say, since I've not been a parent.
> >
> >=20
> >
> >One thing I've always wanted to try, but haven't yet, is skydiving.
I
> >guess I'd better get after it before the opportunity passes me by.
> >
> >=20
> >
> >Kendall Corbett
> >
> >=20
> >
> >An unreasonable man (but my wife says that's redundant!)
> >
> >=20
> >
> >The reasonable man adapts himself to the world; the unreasonable one
> >persists in trying to adapt the world to himself. Therefore, all
> >progress depends on the unreasonable man.
> >
> >=20
> >
> >-George Bernard Shaw 1856-1950
> >
> >=20
> >
> >=20
> >
> >=20
> >
> >-----Original Message-----
> >
> >From: Linda Walker [mailto:[log in to unmask]]=20
> >
> >Sent: Thursday, June 16, 2005 9:44 AM
> >
> >To: [log in to unmask]
> >
> >Subject: Re: new to list introduction
> >
> >=20
> >
> >hmmm...wise advice because he wants to please us he might try too
hard
> >
> >also. He can ride his tricycle 2 miles. We often play a counting
game.
> >Nana
> >
> >count how fast I get into the car. We have a trampoline and he could
not
> >
> >even stand up on it at first and now he has taught himself to jump
alone
> >
> >and recently I counted 535 jumps his record before falling. None of
us
> >
> >could belelive he could do it. He is motivated by a two year older
> >brother
> >
> >as well. Thank you all.
> >
> >=20
> >
> >At 07:09 PM 6/15/2005, you wrote:
> >
> > >it is good that Case already knows when and how to say
> >
> > >i need help. many of us did things that it would have
> >
> > >been better had we knew that we were pushing beyond
> >
> > >what we could wisely do.
> >
> > >
> >
> > >--- Linda Walker <[log in to unmask]> wrote:
> >
> > >
> >
> > > > Thanks so much. We are on North shore of Oahu and he
> >
> > > > attends Sunset
> >
> > > > Elementary which is across the street from Pipeline,
> >
> > > > one of the most famous
> >
> > > > big wave beaches. In fact if they have to do a
> >
> > > > helicopter rescue they land
> >
> > > > on the school grounds but this has not happened
> >
> > > > since we have been here.
> >
> > > > From reading this list I know he will have a good
> >
> > > > life like so many of you
> >
> > > > have made for yourselves.
> >
> > > > We try not to baby him but because he is so social
> >
> > > > he knows how to wrap us
> >
> > > > around his finger....we sometimes do. Once he said
> >
> > > > to me, nana did you
> >
> > > > forget, I have cp, that is too hard for me to do. I
> >
> > > > said ok let me help
> >
> > > > you. He is too tight to totally dress himself but
> >
> > > > does undressing
> >
> > > > independently and bath and teeth brushing. We have
> >
> > > > definitely taught him
> >
> > > > it's ok to ask for help. We are so lucky that he
> >
> > > > escaped many problems, no
> >
> > > > problem with appetite or digestion. Friends are
> >
> > > > amazed at how much he eats
> >
> > > > and drinks to stay hydrated.
> >
> > > > thank you for answering.
> >
> > > >
> >
> > > > At 01:26 PM 6/15/2005, you wrote:
> >
> > > > >welcome aboard linda,
> >
> > > > > it appears that you all have gotten a lot of
> >
> > > > ducks
> >
> > > > >in a row on helping Case. he sounds like a small
> >
> > > > >wonder. you'll gets lots of infomation here. my
> >
> > > > first
> >
> > > > >bit is to tell you you are on tract. help him
> >
> > > > adjust
> >
> > > > >where necessary and don't baby him.
> >
> > > > > i am ken, a 56 year old retried computer
> >
> > > > programmer.
> >
> > > > >i have two children and two am a grandchildren. i
> >
> > > > live
> >
> > > > >in metro atlanta.
> >
> > > > > by the way, i like hawaii. what island are you
> >
> > > > on?
> >
> > > > >
> >
> > > > >--- Linda Walker <[log in to unmask]> wrote:
> >
> > > > >
> >
> > > > > > Hello,
> >
> > > > > >
> >
> > > > > > I do not have cp but am a family
> >
> > > > caregiver
> >
> > > > > > and joined hoping to learn and
> >
> > > > > > to get advice from people who've already
> >
> > > > experienced
> >
> > > > > > what my 6, nearly 7,
> >
> > > > > > year old fantastic grandson, Case is going
> >
> > > > through.
> >
> > > > > > He has moderate spastic
> >
> > > > > > diplegia, speaks well (lots of speech,
> >
> > > > occupational,
> >
> > > > > > physical and vison
> >
> > > > > > therapy so far) and is mainstreamed in school
> >
> > > > with a
> >
> > > > > > one on one because
> >
> > > > > > there are some things he has not yet mastered.
> >
> > > > He
> >
> > > > > > walks, falls alot, and
> >
> > > > > > loves to run.
> >
> > > > > > Once when watching him run, he fell
> >
> > > > right in
> >
> > > > > > front of me and I noticed
> >
> > > > > > that the reason he fell was because he looked
> >
> > > > down
> >
> > > > > > at his feet. That day
> >
> > > > > > was a huge breakthrough because when I taught
> >
> > > > him to
> >
> > > > > > look out a little
> >
> > > > > > farther he ran all over the park without
> >
> > > > falling. It
> >
> > > > > > was amazing and he was
> >
> > > > > > so pleased with himself. Before this day, I
> >
> > > > thought
> >
> > > > > > he lacked balance, but
> >
> > > > > > the therapists said it was not a balance issue
> >
> > > > and
> >
> > > > > > that caused me to look
> >
> > > > > > for other reasons causing him to crash. I still
> >
> > > > > > think his balance may be
> >
> > > > > > affected by cp despite what the therapists said.
> >
> > > > > > This same eye tracking
> >
> > > > > > issue seems to affect his tricycle riding. He
> >
> > > > > > doesn't look far enough out
> >
> > > > > > to keep from bumping into things but we are
> >
> > > > working
> >
> > > > > > on his being able to
> >
> > > > > > ride home from school without help. He's pretty
> >
> > > > > > close on this.
> >
> > > > > > His father moved the family to Hawaii
> >
> > > > > > because the school in Hawaii was
> >
> > > > > > willing to let him run, whereas the schools in
> >
> > > > Los
> >
> > > > > > Angeles wanted him in a
> >
> > > > > > walker. The school here is terrific as it is all
> >
> > > > > > grass so he does not fall
> >
> > > > > > on asphalt and can be more active which he
> >
> > > > loves. We
> >
> > > > > > are trying to see that
> >
> > > > > > he is as independent as possible and also keep
> >
> > > > him
> >
> > > > > > aerobicized to develop
> >
> > > > > > his heart and strength. He is a highly motivated
> >
> > > > > > child with a terrific
> >
> > > > > > spirit who would probably fit in well with this
> >
> > > > > > group when he is older.
> >
> > > > > > He has had several rounds of botox and
> >
> > > > it
> >
> > > > > > seems to work pretty well on
> >
> > > > > > him. In Los Angeles they did not sedate him and
> >
> > > > it
> >
> > > > > > hurt him so his mother
> >
> > > > > > did not take him back. In Hawaii the doctor
> >
> > > > sedates
> >
> > > > > > him, this is so much
> >
> > > > > > better. I was surprised we were not offered that
> >
> > > > > > option before and didn't
> >
> > > > > > know about it but there is no reason he or
> >
> > > > anyone
> >
> > > > > > should suffer. I read
> >
> > > > > > about how scared some people were to get botox
> >
> > > > and
> >
> > > > > > how it left them
> >
> > > > > > traumatized. I don't see how doctors can
> >
> > > > consider
> >
> > > > > > doing this without light
> >
> > > > > > sedation.
> >
> > > > > > The doctors are suggesting the heel cord
> >
> > > > > > lengthening operation. I am
> >
> > > > > > wondering if anyone here has had it. We have
> >
> > > > heard
> >
> > > > > > the older he is when he
> >
> > > > > > has the operation the better the result. Does
> >
> > > > anyone
> >
> > > > > > have any first hand
> >
> > > > > > experience they want to share with me? Is there
> >
> > > > > > anythng that is not as
> >
> > > > > > dramatic that works well? He is stretched daily
> >
> > > > and
> >
> > > > > > learning to do his own
> >
> > > > > > exercises. The whole family exercises regularly
> >
> > > > so
> >
> > > > > > this helps motivate him.
> >
> > > > > > Anyhow I probably won't stay on the list
> >
> > > > > > because I feel like I don't
> >
> > > > > > belong. I hope it's ok to ask these questions.
> >
> > > > > >
> >
> > > > > > All the best to everyone,
> >
> > > > > >
> >
> > > > > > Linda
> >
> > > > > >
> >
> > > > >
> >
> > > > >
> >
> > > > >
> >
> > > > >
> >
> > > > >__________________________________
> >
> > > > >Do you Yahoo!?
> >
> > > > >Make Yahoo! your home page
> >
> > > > >http://www.yahoo.com/r/hs
> >
> > > >
> >
> > >
> >
> > >
> >
> > >
> >
> > >
> >
> > >__________________________________
> >
> > >Do you Yahoo!?
> >
> > >Read only the mail you want - Yahoo! Mail SpamGuard.
> >
> > >http://promotions.yahoo.com/new_mail
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