PSP Drs in Chicago Area/Univ of FL-Gainsvle


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PSP Drs in Chicago Area/Univ of FL-Gainsvle

Postby boxcar9 » Thu Sep 27, 2012 12:33 am

I would like names of drs that have experience treating patients w/PSP in the Chicago Area. My mom (age 71) has been diagnosed by dr at Univ Of IL-Chicago BUT they clearly admit they don't have expertise for her care (and I will say they don't have the time either). :|

WHO ARE the specialists in the Chicago/Milwaukee/Midwest area with PSP experience?

It's taken nearly 2 yrs to get down to PSP diagnosis because you CAN'T get an APPT with a neurology specialist ANYWHERE (wait time is a min of 3 mos & an avg of 5+mos). I am frustrated with the lack of availability of drs. We can't even get in to Mayo in MN.

Also, is the University of Florida at Gainsville trying to become a "Center for Excellence for PSP" and who bestows this designation upon them?

Thanks for any and all info--it is greatly appreciated!
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Re: PSP Drs in Chicago Area/Univ of FL-Gainsvle

Postby Robin » Thu Sep 27, 2012 12:41 am

There must be someone good at Rush or Northwestern! Let me check my lists. Did you contact the support group leader or "communicators" in the area to get their recommendations?

Sorry you can't get in to Mayo Rochester. Is Case Western in Cleveland too far?

U of F as the PSP center of excellence?? Never heard of it.

I would say the centers of excellence are where the CurePSP Science Advisory Board members are or where past members are.
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Re: PSP Drs in Chicago Area/Univ of FL-Gainsvle

Postby Robin » Thu Sep 27, 2012 12:03 pm

Here are three Chicago area movement disorder specialists that have shown up on the PSP radar for the last several years:

Dr. Chris Goetz or Dr. Jennifer Goldman
Rush University Medical University
http://www.rush.edu/rumc/page-R11902.html

Dr. Tanya Simuni
Northwestern University
http://www.parkinsons.northwestern.edu/simuni.html

Also at Northwestern's PD/Movement Disorders Center is a social worker named Diane Breslow, who is very familiar with PSP. As she is/was on the CurePSP Board, she might be a good starting point to find an MD who might be best-suited to the situation. (psp.org is down for me right now so I can't check if she's on the Board or not. She was in 2010.)
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