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Old 05-19-2014, 06:16 PM
Forgetmenot Forgetmenot is offline
Junior Member
 
Join Date: May 2014
Posts: 10
10 yr Member
Forgetmenot Forgetmenot is offline
Junior Member
 
Join Date: May 2014
Posts: 10
10 yr Member
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Thank you for your response,
When I viewed the U of Rochester Website and researched some of the names, they do look like they are highly qualified, and because I was concerned about "bedside manner", time given, accessibility, and yes a partnership style, I have been trying to get personal recommendations. But I find this extremely difficult. I have posted on a few of these forums and contacted the closest National Parkinsons Foundation support group. I have received only 2 personal experiences. One is as I stated in the post before, a recommendation for Ray Dorsey and another was a poor experience with U of Rochester MDSs in general. One PWP on a forum stated that the MDSs there at Rochester were too busy doing research to give time to patients and he wasn't happy with them. I have a phone call into Dr. Ray Dorsey's office asking if he will accept new patients, and we will see how long it will take to get in there.
I tried the Partners in Parkinson's search for a MDS App and it worked. When I first put in my zip code and the 50 mile radius, I found the one MDS that I knew was in my area -- in Syracuse. When I searched 100 miles many of the U of R MDS appeared (although not Dr. Ray Dorsey, however, since he recently moved back from John Hopkins maybe that is why), also some other names came up as well.
It would be closer for us to drive to Syracuse - 45 minutes vs. 90 minutes driving time. But I agree with you -- U of R seems to be a more "world class" facility. I'm just hoping they are not too "world class" and too busy to give each individual patient time. I think we will give Dr. Dorsey a chance -- but the first key will be how soon his secretary gets back to us and how soon we can get an appointment. It isn't an emergency, but if it takes too many months that will be a red flag to me that he is too busy.

Just as you do, we prefer a "partnership arrangement" with our docs. I have an autoimmune disease (similar to Lupus and Scleroderma) and my Rheumatologist works that way. He gives me my options and asks me "what do you want to do?" He tells me that he works for me, and he wants me to make the decisions on what treatments to try, etc.. I like to do research and be a part of my treatment decisions and so that works for me. As for my husband and PD-- he does not want to read a thing about PD-- but he wants me to research and learn and share with him(he prefers not to know the really scary possibilities, so I give him information that I think he needs, and can handle) then as far as treatment he wants this to be a joint decision -- so for us it will be more of a 3 way team: the doc, my husband, and I.
One more question, you said you tried out a few docs before finding the right one. How does that work with insurance? Will they pay for all that doctor hopping. Even if they would, I'm not sure that my husband would go along with it. He's not too keen on going to docs yet. I had to do some encouraging to get him to make this first step and see an MDS for a second opinion. So I am really hoping we can find the right person the first time. I'm hoping our insurance will pay for it! I did find out U of R is in network for us.
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