We are in the Courtyard by Marriott on the Mayo Campus in Jacksonville. P has registered and has his first appointment at Neurology tomorrow at eight am. Phone 904 223 1700 Room 241. Free high speed connection, not wireless though. Lucky I brought my cord etc. along with my wireless link dohicky, eh Eva? Will check mail and blog. Love K
Hell yeah! That sounds like fun! Here's a question, though: That part of the river is not as swift, which is nice. But how c-c-cold will it be? I assume that the rush of water coming from the dam would be from deep in the wahtah, yes?
P says his boys don't shrink. I say, We'd go before the water from the dam came, or maybe not. Maybe too cold. I don't know. So, I read this to P and he is in the process of explainging to me the other meaning of "boys." Like where does he think ....oh, well, never mind.
Jump on J T Butler and take it right to the beach. There are a ton of great places there- seafood, steaks, stuff like that. Right where they are, though, there's isn't a lot of great stuff- just your normal mass produced fares. However, up a few exits, on Southside Blvd, there are a lot of good places. Sushi, New Orleans, stuff like that.
This place is a little pricey, but really, really good, if that is there thing.
Sending this at 5:22pm Wednesday, May 18. Got OML's phone message. Thanks, Dip.
We have a diagnosis. "Multiple Systems Atrophy" Found in 0.1 or less % of population. No known cause yet. P is having a genetic work up also for their study and our info. We won't have the results of that for several months. A progressive disease, no cure, no treatment that will improve things. First step in treatment to maintain independance as long as possible, is physical therapy, and support hose--to try to lessen the b/p drop upon standing. P has another test tomorrow, then we head home. These tests are mostly to determine extent of progression. P says "that's all the information for right now." Doc says, there are drugs that can be used later to possibly lesson symptoms--corticosteroids and stuff used in Parkinson's Disease, etc. Goint to dinner now. love
Ok, yes. Mt. Sinai is the center of the US on this. Specifically, Horacio Kaufmann. I took the liberty of sending him an email asking if he is still taking new subjects for his clinical trials.
15 comments:
Best of luck, I´ll keep my eyes crossed.
We are in the Courtyard by Marriott on the Mayo Campus in Jacksonville. P has registered and has his first appointment at Neurology tomorrow at eight am. Phone 904 223 1700 Room 241.
Free high speed connection, not wireless though. Lucky I brought my cord etc. along with my wireless link dohicky, eh Eva?
Will check mail and blog. Love K
Cool. Keep us posted. Glad you have free ethernet. Did you check for that in advance? You will in the future, trust me.
(I wonder if there's a way to hook up the cabin on a temporary basis...)
[slap!]Why the hell would I want to go and do a thing like that?!?!
Yeah, especially when you got all that tv and music available already. May we tube?
May we tube?
Hell yeah! That sounds like fun! Here's a question, though: That part of the river is not as swift, which is nice. But how c-c-cold will it be? I assume that the rush of water coming from the dam would be from deep in the wahtah, yes?
Does everyone understand about shrinkage?
P says his boys don't shrink.
I say, We'd go before the water from the dam came, or maybe not. Maybe too cold. I don't know. So, I read this to P and he is in the process of explainging to me the other meaning of "boys." Like where does he think ....oh, well, never mind.
Advice on J'ville dining, from a "towny":
Jump on J T Butler and take it right to the beach. There are a ton of great places there- seafood, steaks, stuff like that. Right where they are, though, there's isn't a lot of great stuff- just your normal mass produced fares. However, up a few exits, on Southside Blvd, there are a lot of good places. Sushi, New Orleans, stuff like that.
This place is a little pricey, but really, really good, if that is there thing.
http://jacksonville.citysearch.com/profile/33450484?marquee_type=vote_thanks&specialty_id=49&plog=1
Also, there are a ton of good eats right in that area. if they get there, there is anything they can think of to eat.
It's this place:
http://www.copelands.net/copelands/copeland.asp
Lemme break that down:
http://
jacksonville.citysearch.com/
profile/33450484
?marquee_type=vote_thanks&
specialty_id=49&plog=1
Thanks. Next chance we get.
Sending this at 5:22pm Wednesday, May 18. Got OML's phone message. Thanks, Dip.
We have a diagnosis.
"Multiple Systems Atrophy" Found in 0.1 or less % of population. No known cause yet. P is having a genetic work up also for their study and our info. We won't have the results of that for several months.
A progressive disease, no cure, no treatment that will improve things. First step in treatment to maintain independance as long as possible, is physical therapy, and support hose--to try to lessen the b/p drop upon standing. P has another test tomorrow, then we head home. These tests are mostly to determine extent of progression. P says "that's all the information for right now."
Doc says, there are drugs that can be used later to possibly lesson symptoms--corticosteroids and stuff used in Parkinson's Disease, etc.
Goint to dinner now. love
There are at least eight related clinical trials underway that are recruiting subjects.
http://clinicaltrials.gov/search/term=Multiple%20System%20Atrophy
Of these:
1) is remote (Australia), and tangential conditions to MSA, I think.
2) doesn't involve any treatment
***3) Seems slightly related, does involve treatment (gonna read deeper in a bit)
*****4) Is right on the money: testing effectiveness of droxipoda for therapy of Shy-Drager (MSA). Located at Mt. Sinai.
5) Studying treatment of hypotension with a medicine - expected completion, Fall 2003???
6) Same as 5?
7) Post-polio syndrome? WTF?
8) Looks focused on inherited disorders, which "they" say MSA isn't.
Dig in, yo.
Ok, yes. Mt. Sinai is the center of the US on this. Specifically, Horacio Kaufmann. I took the liberty of sending him an email asking if he is still taking new subjects for his clinical trials.
www.mssm.edu
A pretty deep pile of really interesting stuff.
Hey, Gock. Is the reason you hung up on me with "Oh, uh, I'll call you right back!" that you were conducting this research and drafting your blogs?
Sorry. I got a call from M.
I called that Kaufmann guy's number. Whoever answered said "he just sees patients, you know, with insurance" when I asked about the clinical trials.
I don't know what to make of that. I would think that there would be published results of the trials if he completed them.
That's cool. I figured you got a call and didn't want to call me back so late.
Hmm about Doctor Kaufmann.
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