If we go, it'll be this summer (late July to mid-August)

On 6/20/07, Linda Walker <[log in to unmask]> wrote:
> Don't go in winter but it is beautiful.
>
> At 02:43 PM 6/20/2007, you wrote:
> >I think I'd like to find out if they've got solid clinical reasoning
> >for the upper age limit first; if they do, and are willing (and able)
> >to refer to others with more expertise in an "older" population, I'm
> >all for going with the practitioner who has the better track record
> >and experience in that sub-population.  The nice thing about a
> >"clinic" approach though, is the ability to access several experts at
> >the same time.
> >
> >The head of the PM&R department at Wayne State is one of the
> >co-authors on the ITB papers that led us to Janet's surgeon in
> >Colorado Springs.  Might be worth a trip to Detroit, as that's close
> >to where my Dad did his surgical residency - Ann Arbor - (40 years ago
> >now!).  I've never been to Michigan, as I was born in Nebraska, where
> >Dad was doing his fellowship in thoracic and vascular surgery.  Don't
> >even know if Dad's been back to Ann Arbor.  I've always wanted to see
> >Michigan, though.
> >
> >On 6/20/07, Linda Walker <[log in to unmask]> wrote:
> > > It's at least worth a letter from you guys. It could help someone
> > > else who is not as able to advocate for themselves. And it could be
> > > someone new who does not know the law. Good luck! I still read the
> > > list most times but post rarely now. Case continues to do well since
> > > surgery. I wish all of you the best.
> > >
> > > At 11:58 AM 6/20/2007, you wrote:
> > > >Linda,
> > > >
> > > >It'd definitely be covered under 504, as it's run through the
> > > >University of Colorado Health Sciences Center (at Denver Children's
> > > >Hospital).  The thing we're thinking is that if the docs there aren't
> > > >comfortable with people "our age," we'd probably be best looking
> > > >elsewhere.  They gave us a referral to another Denver Doc, but we
> > > >haven't been able to get an appointment with her yet.   so we'll give
> > > >her a shot first.
> > > >
> > > > >From the research we've done, about the best place in the country for
> > > >PM&R (physical medicine and rehab) training in the country for adults
> > > >with CP is Wayne State in Detroit.  There's one doc on the UCHSC
> > > >faculty in PM&R that trained there, but she does kids now.
> > > >
> > > >On 6/20/07, Linda Walker <[log in to unmask]> wrote:
> > > > > I am currently reading Legal Rights of Persons with Disabilities: An
> > > > > analysis of Federal law. It is a legal reference book written by
> > > > > Bonnie Tucker and Bruce Goldstein. I am NOT an attorney and cannot
> > > > > give legal advice and this is for informational purposes only. Well
> > > > > you guys probably already know a lot more about this than I do
> > > > but here it is.
> > > > >
> > > > > It quotes Alexander v Choate as holding that "Section 504 seeks to
> > > > > assure evenhanded treatment and the opportunity for handicapped
> > > > > individuals to participate and benefit from programs receiving
> > > > > federal assistance."
> > > > >
> > > > > Further rulings have stated that if you are denied services in a
> > > > > federally funded program they must offer an opportunity for an equal
> > > > > alternative program.
> > > > >
> > > > > What it basically says is disabled people cannot be denied equally
> > > > > effective health services. This is age discrimination it seems as well.
> > > > >
> > > > > If there is any chance this clinic receives federal monies I think
> > > > > you could quote that in a letter and demand access to this care. The
> > > > > case involved medicaid insurance and I don't know if you are using
> > > > > that but they I think if this is the best care for Janet then I would
> > > > > write and insist on it.
> > > > >
> > > > >
> > > > > At 10:04 AM 6/20/2007, you wrote:
> > > > > >My neurologist's nurse has me go over my entire med list every time
> > > > > >I'm there.  It's kind of a pain, but that way we're clear about meds
> > > > > >and avoid errors.  We're working on the right med/dosage level for my
> > > > > >spasticity, so the caution is especially warranted.  He's mentioned a
> > > > > >baclofen pump, but I think we'll try oral meds for about another 6
> > > > > >months as that'll be about a year.  If I do eventually go with a pump,
> > > > > >at least I know of a good surgeon for it! ;-{)}
> > > > > >
> > > > > >
> > > > > >On another note, I mentioned that Janet was to have an appointment
> > > > > >with the adult CP clinic in Denver two weeks ago, but they called and
> > > > > >said that we are too old!  The age range they're working with
> > > > > >presently is 18 - 30, and we're 46.  So, is the theory that people
> > > > > >over 30 don't have CP, or is it that people over 30 with CP are part
> > > > > >of the geriatric population!?!  It'd be nice if people over 30
> > > > > >couldn't have CP, because then all our other ailments could be treated
> > > > > >without that "complicating factor!"  I DON'T want to consider that my
> > > > > >beautiful bride and I are geriatric cases!
> > > > > >
> > > > > >
> > > > > >On 6/19/07, Kathy Salkin <[log in to unmask]> wrote:
> > > > > > > As some of you may recall, I had surgery last week and because they
> > > > > > > gave me two meds together, my blood pressure plummeted down to a
> > > > > > > really low level.  I went back to the doctor today to have the
> > > > > > > surgical staples removed and they asked me what
> > medications I was on
> > > > > > > (normal procedure when one goes to a doctor nowadays).  Well she
> > > > > > > started to put in Nifedipene and turned and looked at me and said,
> > > > > > > "But it says here that you take Procardia!"  I almost fell off my
> > > > > > > chair because I had told them when I went there a month and a half
> > > > > > > ago that my GP had switched my BP med.
> > > > > > >
> > > > > > > Oy vey ....!
> > > > > > >
> > > > > > > (BTW, the staple removals was painless and the implanted
> > ear is doing
> > > > > > > fine.  Now all I have to deal with right now is a sinus drainage
> > > > > > > problem which the doctor assured me is normal).  I get connected on
> > > > > > > July 10 - I can't wait!
> > > > > > >
> > > > > > > Kat
> > > > > > >
> > > > > > > -----------------------
> > > > > > >
> > > > > > > To change your mail settings or leave the C-PALSY list, go here:
> > > > > > >
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> > > > > > >
> > > > > >
> > > > > >
> > > > > >--
> > > > > >
> > > > > >
> > > > > >Kendall
> > > > > >
> > > > > >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
> > > > > >
> > > > > >-----------------------
> > > > > >
> > > > > >To change your mail settings or leave the C-PALSY list, go here:
> > > > > >
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> > > > >
> > > > > -----------------------
> > > > >
> > > > > To change your mail settings or leave the C-PALSY list, go here:
> > > > >
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> > > > >
> > > >
> > > >
> > > >--
> > > >
> > > >
> > > >Kendall
> > > >
> > > >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
> > > >
> > > >-----------------------
> > > >
> > > >To change your mail settings or leave the C-PALSY list, go here:
> > > >
> > > >http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> > >
> > > -----------------------
> > >
> > > To change your mail settings or leave the C-PALSY list, go here:
> > >
> > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> > >
> >
> >
> >--
> >
> >
> >Kendall
> >
> >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
> >
> >-----------------------
> >
> >To change your mail settings or leave the C-PALSY list, go here:
> >
> >http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go here:
>
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>


-- 


Kendall

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

-----------------------

To change your mail settings or leave the C-PALSY list, go here:

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