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Topic Conference Information Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.05.05 17:51
Well, I do apologize for not posting before now, but we went to our monthly PD meeting yesterday and have had a busy week...

The conference at UCSF was well attended (sold out), and while there were many great ideas bandied about and discussed, neither of us felt it was beneficial for us...many because at the beginning of each lecture, the physicians/researchers did an excellent job of "dumbing down" their information, which made it palatable. However, to a person, they lapsed into highly technical terminology and lost the crowd! The food that was served was ill planned, too...to me, it wasn't PD friendly...required cutting brie, holding heavy glass plates, being able to stretch to reach the actual food...and who puts out granola bars and engergy bars for PWP? I realize there are many without food issues, but it seems to me it should have been better planned.

That said, we came out of it with the names of two wonderful doctors and are planning on contacting one of them who was more highly sought after...cannot wait.

We did, however, attend our monthly PD meeting and learned a few good points, that may/may not be new...Here goes...

1. Stem cell research has not given lasting results and is more likely than not paid for by insurance. His suggestion: if someone offers to "do" stem cell implantation, say, "not at this time." It may prove promising, but right now it isn't effective.

2-Droxidopa is one of the newest and most promising PD drugs.

3-Azilect when added to requip is proving to be effective in early PD.

4-Tozadenant is being used for wearing off fluctuations for patients with levodopa.

This neurologist was very interesting and seemed dedicated to PD.

By jcoff012 On 2013.05.05 17:54
Just reread my post...correction...He said stem cell implantation is more likely NOT paid for by your insurance...it is costly and here in CA there is only one clinic near LA that does it. His one patient who tried it saw NO results after three months.

By carman96 On 2013.05.06 05:43
Interesting Jane. But nothing really new though it sounds like.
The problem with having a popular neurologist is getting an appointment. We go to UC Davis in Sacramento. She is also a professor so only sees patients 2 days a week. I had to change an appointment and had to wait 6 more weeks to get in. Our local neuro was easy to get in to see but I really wanted a movement disorder specialist.
Not sure if she is with the wait though because he is getting worse and any change in meds we have to wait 3 months to see how they are working.
Unfortunately I don't know of any doctor that can perform miracles.
Hope the doctor you choose is a good one!

By jcoff012 On 2013.05.06 12:13
Carman, look up Lin Zhang...he his the neurologist who spoke at the meeting. A bit hard to understand, but great sense of humor. He is accepting new patients.

We have no good doctors within 100 miles...no one specializes in PD and no movement disorder pecialists...it is very discouraging.

Carl's insurance would allow him a local dr. And to go to SF, so we hoping this new dr. Will take him...we'll see. Could it be worse than the one he has who has NEVER returned a call, doesn't see him or monitor his meds?


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