[TMIC]
CAN ANYONE SUGGEST A DOCTOR IN ARIZONA WHO KNOWS WHAT TM IS? C``` Cookie in Arizona
RE: [TMIC] Spring newsletter
Very good news Cammy, Does he know that we are looking for his help on this matter. Understand, that this is all new for me as of now I don't know where we stand on all of this but I was asked by Sandy to help out on getting this idea back in peoples heads as far as tmers. And so far as of my first post on this subject I have had several people who are now showing an interest in developing this data-base. So basically this is the extent of my involvement. I will continue to be a sounding board for Sandy and I will keep answering e-mails from members and reminding them what we are trying to do. This is important and I will try to do my very best at renewing the interest that Sandy needs. Then I will be passing this information along to Sandy so he can start putting this project into motion. Thanks for your help. Rick -- GOD BLESS US ALL> -- Original message -- From: Cammy <[EMAIL PROTECTED]> > > He is up on what is going on. Simply a great reference to have for the > Portland > area. So is OHSU for that matter. Emmanuel Hospital knew about TM, but OHSU > will > do more. If someone were to be stricken with this there, you would tell them > to > get to OHSU. > > -Original Message- > From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] > Sent: Wednesday, January 09, 2008 2:57 PM > To: Cammy > Subject: RE: [TMIC] Spring newsletter > > Cammy, What kind of contribution do you feel Dr.Burdett can lend to us on > this > project? Rick > > -- > GOD BLESS US ALL> > > > -- Original message -- > From: Cammy <[EMAIL PROTECTED]> > > > > Hi. Dr. Burdett in Portland at OHSU is the man. He came through Dr. > > Greenberg > > from Johns Hopkins. > > > > -Original Message- > > From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] > > Sent: Tuesday, January 08, 2008 1:54 PM > > To: tmic-list > > Cc: tmic-list > > Subject: [TMIC] Spring newsletter > > > > Dear membership, This is Rick in Tn. Back in spring in our newsletter, > > Sandy > had > > issued a challenging project to us and had very little response to it, > > which > is > > an absolute shame. The initative was to instigate a data-base of your Drs., > Your > > main Dr. that you visit on a regular basis. This is the Dr. that hopefully > > is > > helping you to live with your case of TM. The shame is that only nine of us > > responded to Sandy's request. The objective of this data-base is to give > > your > > Dr. a real live place where he or she can get access to information about > > the > > treatments available to help your Dr. best treat your individual case of TM > > or > > any of the other afflictions that are in the scope of our group, be it TM, > ADEM, > > MS ect. I just got off of the phone with Sandy and I feel that he was about > > to > > give up on the notion. This is not good simply because it gives your Dr. a > > data-base that they may go to where they can get the most up to date > information > > on the range of treatments available to us! > > . This > > is for our benefit and also and most important your Dr. can find ways to > > help > us > > survive with this monster. It would be an absolute shame to let this idea > > just > > slip away without a chance to see if it will help us and our DRs. And by > > the > way > > Sandy wanted me to say Hi to all of you and to wish you all a healthy New > Year. > > > Now here is another chance for us to get this data-base into reality > > > mode. > > All you have to do is send Sandy in an e-mail or call him with contact > > information about your Doctor, such as first Their Name,the organization > > they > > work at, Their address,city state and zip code,Their phone number include > > area > > code,and most important their e-mail address. You should make sure that > > this > is > > cool with your Dr. Listen folks this is for our benefit and the importance > > of > > this is of the highest priority. Sandy told me that this is going to be a > > very > > difficult process, but together we can make it work. Our Drs. need to know > what > > is available to them and to our treatment. Make sure your Doctor understands > > that all of his information will be kept in a completely safe and secure > > data-base free of infestation. Now, Sandy assured me that this will not be a > > simple process so if you have any valid suggestions on setting up a > > data-base > > your expertise will be wanted if not required. People Please,! > > this i > > s something of a breakthrough and it will require some of the best minds we > > have. Sandy has initiated a very challenging project, so lets not let him > down. > > Your Spring Newsletter 2007 touches on this so dig them out and read from > > the > > first page of Volume7 Issue 2 (from the editor). Together we can make this a > > reality and another source for us to get the type of help we need and > > deserve. > > Please lets don't drop the ball, this will req
Re: [TMIC] Spring newsletter
Todd, I think I would include both Doctors. If one rejects the idea maybe the other will see the advantage in having this information. The main thing is to get them involved so this can come into reality. I think for sure the DR. that is treating you for TM would appreciate the information more than anyone else. Explain what we're trying to do and assure him that he has nothing to lose and everything to gain, especially if he treats more than one case of TM. I explained this to my Dr. on the phone instead of in person because I wanted to get this information to Sandy as fast as I could. So you may want to just put in a call to your private Dr. that handles your TM. case. Please, it is important that we get this underway asap. There are going to be many obsticals to deal with, and the sooner we get started on this the better. If you have any ideas on developing this data-base then get in touch with Sandy at your earliest conveince. Time is of the essence so we need to get cra! cking o n this. From now on direct you mail to Sandy so he can start building or planning a format. I for one cannot wait to see how this develops. Thank you Todd, your help will be greatly appreciated. Rick Ashford -- GOD BLESS US ALL> -- Original message -- From: Todd Tarno <[EMAIL PROTECTED]> > > Thanks for the reminder. > My partner/caregiver had it & other catalogs put aside and forgot to give > it > to me. I have two doctors. One with the state for my HIV+ and one under my > Humana Part-D insurance. I have given a couple of newsletters to my state's > doctor, because I have been with him since moving to Corpus Christi, TX and > he > was interested in them. I don't know which one doctor or if I should do both > doctors. > I know there are wonderful data base programs out there, that are better > than > Excel ( which I don't have, but know how to use ). > Thanks Again, Peace & BIG Hugs, > Todd in CC, TX > > [EMAIL PROTECTED] wrote: > Dear membership, This is Rick in Tn. Back in spring in our newsletter, > Sandy > had issued a challenging project to us and had very little response to it, > which > is an absolute shame. The initative was to instigate a data-base of your > Drs., > Your main Dr. that you visit on a regular basis. This is the Dr. that > hopefully > is helping you to live with your case of TM. The shame is that only nine of > us > responded to Sandy's request. The objective of this data-base is to give your > Dr. a real live place where he or she can get access to information about the > treatments available to help your Dr. best treat your individual case of TM > or > any of the other afflictions that are in the scope of our group, be it TM, > ADEM, > MS ect. I just got off of the phone with Sandy and I feel that he was about > to > give up on the notion. This is not good simply because it gives your Dr. a > data-base that they may go to where they can get the most up to date > information > on the range of treatments available to > us! > . This > is for our benefit and also and most important your Dr. can find ways to help > us > survive with this monster. It would be an absolute shame to let this idea > just > slip away without a chance to see if it will help us and our DRs. And by the > way > Sandy wanted me to say Hi to all of you and to wish you all a healthy New > Year. > > Now here is another chance for us to get this data-base into reality mode. > > All > you have to do is send Sandy in an e-mail or call him with contact > information > about your Doctor, such as first Their Name,the organization they work at, > Their > address,city state and zip code,Their phone number include area code,and most > important their e-mail address. You should make sure that this is cool with > your > Dr. Listen folks this is for our benefit and the importance of this is of the > highest priority. Sandy told me that this is going to be a very difficult > process, but together we can make it work. Our Drs. need to know what is > available to them and to our treatment. Make sure your Doctor understands > that > all of his information will be kept in a completely safe and secure data-base > free of infestation. Now, Sandy assured me that this will not be a simple > process so if you have any valid suggestions on setting up a data-base your > expertise will be wanted if not required. People Please,! > this i > s something of a breakthrough and it will require some of the best minds we > have. Sandy has initiated a very challenging project, so lets not let him > down. > Your Spring Newsletter 2007 touches on this so dig them out and read from the > first page of Volume7 Issue 2 (from the editor). Together we can make this a > reality and another source for us to get the type of help we need and > deserve. > Please lets don't drop the ball, this will require a concerned effort from > everyone so , LETS GET
Re: [TMIC] Spring newsletter
Pam,your exactly right. This will be a monster challenge for us to get this into a working mode. If your Dr hesitates then simply ask him " Dr are you really wanting to help me or are you just pretending that you want to help. This will cost you nothing and will give you the latest avaliable information on TM. There is no way your Doctor can be hurt by accessing this data-base. WE're talking about something that has never before been offered to any Dr. Real time instant life saving information at his finger tip." If your Dr. hesitates or desires not to get involved, then you are probably seeing the wrong Dr. My Dr. only sees 2 TM patients and she told me that she thinks that this would pave the way for her to get vital information necessary for my treatment. She did not hestitate to give me everything about her contact information. She is a hard case but being a very good and caring Dr. she told me that this is exactly what she needs in order to better understand just what w! e are d ealing with in the world of a TMer. Pam it will take alot to get this working. Dr. Kerr and his staff must get involved also Because he and his research team are the key, We have got to find a way to get our latest information into this data-base. I'm sure Sandy will figure all of this out but we all have to talk to our DRs. and get them involved or this will never materialize. Everyon here has to put on their thinking caps and work together as a team or this will not work. But it can and will work. Impossible needs to be a word that no longer exists in our vocabulary. Thanks Rick -- GOD BLESS US ALL> -- Original message -- From: [EMAIL PROTECTED] > > This is the first I am hearing of this. I think it would be great. Like you > said it would take a lot of work, and you would have to ask your doctors and > the hospital you go to.It would be great though. > GOD BLESS TIAD PAM > > > In a message dated 1/8/2008 8:42:21 P.M. Central Standard Time, > [EMAIL PROTECTED] writes: > > Jenna, Thank you, Please get your information to Sandy or me and I will make > note of it and it get directly to Sandy. And like I said If you know how to > organize a data-base that will work for this project then I'm positive > that Sandy is open to suggestions. He is most definately going to need all > the help we can give him so ask around and lets come up with something > professional and functional, and the easiest for a Dr. to use. It probably > will > require immediate response time or a Dr. probably won't waste their valuable > time > using it.. As you well know they have very precious time to waste on you, > even when you have an appointment much less than when your in an emergency > setting. And The ER. is probably going to have to be included in this > data-bank > also. Its going to be very complicated, as you can well imagine. It is going > to take some serious control.Rick > -- > GOD BLESS US ALL> > > > -- Original message -- > From: Jenna <[EMAIL PROTECTED]> > > > > Hey Rick, you are right. I know I read that when it came out and just > forgot > > about it...Thanks for reminding me. And yes Sandy is the best > > > > Jenna > > > > > > > > - Original Message > > From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> > > To: tmic-list > > Cc: tmic-list > > Sent: Tuesday, January 8, 2008 4:53:33 PM > > Subject: [TMIC] Spring newsletter > > > > Dear membership, This is Rick in Tn. Back in spring in our newsletter, > Sandy had > > issued a challenging project to us and had very little response to it, > which is > > an absolute shame. The initative was to instigate a data-base of your > Drs., Your > > main Dr. that you visit on a regular basis. This is the Dr. that hopefully > is > > helping you to live with your case of TM. The shame is that only nine of > us > > responded to Sandy's request. The objective of this data-base is to give > your > > Dr. a real live place where he or she can get access to information about > the > > treatments available to help your Dr. best treat your individual case of > TM or > > any of the other afflictions that are in the scope of our group, be it TM, > ADEM, > > MS ect. I just got off of the phone with Sandy and I feel that he was > about to > > give up on the notion. This is not good simply because it gives your Dr. a > > data-base that they may go to where they can get the most up to date > information > > on the range of > > treatments available to us! > > . This > > is for our benefit and also and most important your Dr. can find ways to > help us > > survive with this monster. It would be an absolute shame to let this idea > just > > slip away without a chance to see if it will help us and our DRs. And by > the way > > Sandy wanted me to say Hi to all of you and to wish you all a healthy N
Re: [TMIC] Spring newsletter
Thanks Jenna , This is what its going to take. Like I say, considering what all will be involved in this project Its going to take some good minds to come up with something that will be an educated source and a wealth of information. So we are going to need everyones help on this. Rick -- GOD BLESS US ALL> -- Original message -- From: Jenna <[EMAIL PROTECTED]> > > Hi Rick and Sandy, My husband is going to send out an e-mail to all the > people > on his LinkedIn thing...I don't really know how it works, but he has over 500 > computer people he chats with. I let you know what happens. > > Jenna > > > > - Original Message > From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> > To: tmic-list > Cc: tmic-list > Sent: Tuesday, January 8, 2008 4:53:33 PM > Subject: [TMIC] Spring newsletter > > Dear membership, This is Rick in Tn. Back in spring in our newsletter, Sandy > had > issued a challenging project to us and had very little response to it, which > is > an absolute shame. The initative was to instigate a data-base of your Drs., > Your > main Dr. that you visit on a regular basis. This is the Dr. that hopefully is > helping you to live with your case of TM. The shame is that only nine of us > responded to Sandy's request. The objective of this data-base is to give your > Dr. a real live place where he or she can get access to information about the > treatments available to help your Dr. best treat your individual case of TM > or > any of the other afflictions that are in the scope of our group, be it TM, > ADEM, > MS ect. I just got off of the phone with Sandy and I feel that he was about > to > give up on the notion. This is not good simply because it gives your Dr. a > data-base that they may go to where they can get the most up to date > information > on the range of > treatments available to us! > . This > is for our benefit and also and most important your Dr. can find ways to help > us > survive with this monster. It would be an absolute shame to let this idea > just > slip away without a chance to see if it will help us and our DRs. And by the > way > Sandy wanted me to say Hi to all of you and to wish you all a healthy New > Year. > > Now here is another chance for us to get this data-base into reality mode. > All you have to do is send Sandy in an e-mail or call him with contact > information about your Doctor, such as first Their Name,the organization they > work at, Their address,city state and zip code,Their phone number include > area > code,and most important their e-mail address. You should make sure that this > is > cool with your Dr. Listen folks this is for our benefit and the importance of > this is of the highest priority. Sandy told me that this is going to be a > very > difficult process, but together we can make it work. Our Drs. need to know > what > is available to them and to our treatment. Make sure your Doctor understands > that all of his information will be kept in a completely safe and secure > data-base free of infestation. Now, Sandy assured me that this will not be a > simple process so if you have any valid suggestions on setting up a data-base > your expertise will be wanted if not > required. People Please,! > this i > s something of a breakthrough and it will require some of the best minds we > have. Sandy has initiated a very challenging project, so lets not let him > down. > Your Spring Newsletter 2007 touches on this so dig them out and read from the > first page of Volume7 Issue 2 (from the editor). Together we can make this a > reality and another source for us to get the type of help we need and > deserve. > Please lets don't drop the ball, this will require a concerned effort from > everyone so , LETS GET IT DONE> Thanks and God bless us all. Rick Ashford in > Tennessee. 01/08/08 > > > > > > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
[TMIC] re: Dec SF TM Mtg outcome
I can't seem to locate Allen Rucker's email address, and would appreciate it if anyone who attended the fundraiser/get-together in San Francisco in December would let me know how it all turned out. There may have been some information on the list, but I haven't been able to read anything about it. Thanks so much and hugs to all, Barbara A in cold and rainy Auburn, CA **Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp0030002489
