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Subject:
From:
Kathy Jo Pink <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sat, 16 Jul 2005 16:48:42 -0500
Content-Type:
text/plain
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Hello Everybody,



For those who are new or don't remember me. My name is Kathy Jo Pink . I
am a thirty -four year old born with Cerebral Palsy and because of this
I need help eating, going to the bathroom, brushing my teeth, taking a
bath (or a shower), washing my hair, shaving , cutting my nails,
dressing, brushing my hair, etc. Basically I need total care much like
an infant.



I left C-PALSY because I went to an Easter Seals Camp in June. I will be
leaving the list in a month again to go to Camp Courageous of Iowa.

Are JerkyMovements a characteristic of all cases of Cerebral Palsy?

I am stillfighting with Independent Living. Last November, I agreed to
go to Cornerstone one day a week (just for Dayservice). That was a BIG
mistake . I said yes because My Mom wanted it and wanted a break and
Cornerstone was building on...well, about a month ago, when I wanted an
assessment for somewhere else, my caseworker said okay and stop going to
Cornerstone. My parents said (after my caseworker left) if you stop
going to Cornerstone , once a week, come the first of the next year, you
will be kicked out of the house and be at Cornerstone permanently and
lose your guardianship. I have been looking in to another options . My
Independent Living Specialist says , "
You are correct, ILR is your local independent living center. However,
our agency which has a personal care services department - unlike other
ILC's - only offers that service in the La Crosse area. One of the
things we do is to help people locate other options for personal care
services or living options. My personal preference is that if a person
has a county case worker, that case worker should be doing that service.
If your case worker needs more resources to help you, I'd be happy to
help in any way I can. But like I said, I prefer you work with your case
worker - She is there to help you. If your case worker is unwilling to
help you, you can let me know and I can assist you with advocating or
helping you find services.
Hope your search is going well. Let me know if you or your case worker
need help." and

however, what your case manage presents may be the only
options available in your area and for your funding source. If you are
not satisfied, let her know and ask why those are the only options. The
area you live in does not have a lot of options to begin with, so you
may not have much to choose from.Yesterday, I wrote a letter to my caseworker, I said As you know, I’m not completely satisfied with
Cornerstone.  Some of the things I like
about it are the  staff and
drivers,  some of the outings and some
of the afternoon activities .  .  Some of the reasons that I don’t like are
the morning programming, I am not given a choice what I want to do when I’m
there (at dayservice), I don’t like some of the the other clients , I don’t
like going to bed early the night before and getting up early.  Is Cornerstone my only option for Dayservice
and Respite ?  If so, why?  If it’s my only option, I am going to get
somebody else involved .  How is Room
and Board paid for Residential Services?
The REM assessment is free. Knowing that, can I have a REM Assessment
done and still continue with Cornerstone?
Until I find something else that I like and can afford , I will be
willing to continue with Cornerstone.
Does Unified have a billing number that could be used for personal care?






On the Fourth of July, my Dad  was out spraying in the  P.M. in the back

pasture.  He had the 4-wheeler and a load of spray spraying.  He was

going along the ditch line and the 4-wheeler and load tipped over on top

of him.  He laid for about 20 minutes before he could move and crawled

out.  He was in so much pain when he finally got back to the house.  He

said I have to go in.  They x-rayed his back and he has a compression

fracture.  He compressed the vertebrae.  He is in alot of pain.  They

gave him four shots and pain pills.  The doctor advised him to stay in

the hospital over night but he wouldn't.  He must be very careful and

any change in his condition he must get to the hospital immediately.   He has a brace.  If the
pain doean't have of let up, he would have gone to Dubuque (Iowa) to
see a specialist and perhaps surgery .   He went to the doctor and the doctor told his do whatver
he wants and stop when it hurts



My Grandmother seems to be doing a lot better!  Since the Tuesday afteer

Mother's Day, she has had pneumonia , couldn't eat or drink, and kidney

failure . She was in and out of the hospital three times.

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