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: > > > > > > > > > > > > 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: > > > > > >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