Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Norma, welcome to our group. If you have being reading this group is full of good helpful people who will try their darnest to help. No question is silly so don't be afraid to ask. What state are you from ? We are spread though out the country, someone may even be close by to meet. Tell us a little about yourself.. Again welcome...................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Norma I am glad that you found your way here. Aussie Maureen > > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 And further! :-) belgium46@... wrote: > ................................................................. We > are spread > though out the country -- Every day I beat my own previous record for number of consecutive days I've stayed alive. . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Norma, my name is sarah witt and i also go to duke. dr bedlack is my doctor as well and he is terrific. i went through a bunch of bad doctors and makes me appreciate him even more. he's a great listener and is very into making people as functional and safe as possible. there's also a great team there--speech therapist and social worker are especially good. the clinic has been great about helping me w/services (disability, mobility devices etc) and putting me in touch w/other good people. also, dr bedlack is always on email and usually gets back to you within 24 hours and will answer any questions you have. i hope this helps and if i can answer any more specific questions just let me know. where are you located? are you in raleigh or durham? i'm in raleigh. sarah > > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Norma, I live in the triad but also go to Duke and see Dr. Bedlack. I have been happy there but I am also new to this and next fall will be my first visit to the ALS clinic. I am slow progressing thus far and hope it stays that way. I think you will find the people at Duke treat you with a decent bedside manner unlike some places. Judith --------------------------------- --------------------------------- New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Welcome Norma, Sure glad Maureen steered you our way. It's a cold lonely world of unknowing without the comfort of this PLS family. Eva > > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Norma, Welcome to the most informative place in the world for PLS. Good luck at Duke. Let us hear your results. Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Hi judith, where do you live? i'm just north of raleigh. sarah > > Norma, > I live in the triad but also go to Duke and see Dr. Bedlack. I have been happy there but I am also new to this and next fall will be my first visit to the ALS clinic. I am slow progressing thus far and hope it stays that way. I think you will find the people at Duke treat you with a decent bedside manner unlike some places. > > Judith > > > > --------------------------------- > > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Hi , I am in Archdale, south of High Point. While I am new I have been with the group longer than you, I think. I was first diagnosed at Wake Forest in 2004, but didn't like the bedside manner so for a second opinion I went to Duke and met Dr. Bedlack. I believe you have progressed rapidly compared to me. It must be scary. Do I remember that you are a researcher? I don't know whether that would be good or bad for your psychological well being. Judith srwitt srwitt@...> wrote: Hi judith, where do you live? i'm just north of raleigh. sarah > > Norma, > I live in the triad but also go to Duke and see Dr. Bedlack. I have been happy there but I am also new to this and next fall will be my first visit to the ALS clinic. I am slow progressing thus far and hope it stays that way. I think you will find the people at Duke treat you with a decent bedside manner unlike some places. > > Judith > > > > --------------------------------- > > > > > --------------------------------- > New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Norma, I sent one email and it came back " delivery failure " and I sent it in " reply " to your post. So I'll try again! I've had whatever I have since age 15 and have gone through quite a few diagnoses but now am labeled with a neuromuscular disorder as every gene test done comes back " normal " . I live in town, which is north of Freemont. I go to Duke to Dr. Bedlack in the MDA clinic. I have an appointment April 11 as I am recuperating from emergency splenectomy surgery March 4 and missed my appointment March 11, as I was in the hospital. Will love hearing from you. in NC nkblackman1007 nkblackman1007@...> wrote: Hi, my name is Norma. This is my first post, thanks to help from Maureen. I am going to Duke University Medical Center next week to Dr. Bedlack to the ALS Clinic for evaluation. Has anyone been there? Thanks, Norma PS. PLS-Friends has really been so helpful to me as I have just been diagnosed with motor neuron disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Norma, I sent one email and it came back " delivery failure " and I sent it in " reply " to your post. So I'll try again! I've had whatever I have since age 15 and have gone through quite a few diagnoses but now am labeled with a neuromuscular disorder as every gene test done comes back " normal " . I live in town, which is north of Freemont. I go to Duke to Dr. Bedlack in the MDA clinic. I have an appointment April 11 as I am recuperating from emergency splenectomy surgery March 4 and missed my appointment March 11, as I was in the hospital. Will love hearing from you. in NC nkblackman1007 nkblackman1007@...> wrote: Hi, my name is Norma. This is my first post, thanks to help from Maureen. I am going to Duke University Medical Center next week to Dr. Bedlack to the ALS Clinic for evaluation. Has anyone been there? Thanks, Norma PS. PLS-Friends has really been so helpful to me as I have just been diagnosed with motor neuron disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Norma, I sent one email and it came back " delivery failure " and I sent it in " reply " to your post. So I'll try again! I've had whatever I have since age 15 and have gone through quite a few diagnoses but now am labeled with a neuromuscular disorder as every gene test done comes back " normal " . I live in town, which is north of Freemont. I go to Duke to Dr. Bedlack in the MDA clinic. I have an appointment April 11 as I am recuperating from emergency splenectomy surgery March 4 and missed my appointment March 11, as I was in the hospital. Will love hearing from you. in NC nkblackman1007 nkblackman1007@...> wrote: Hi, my name is Norma. This is my first post, thanks to help from Maureen. I am going to Duke University Medical Center next week to Dr. Bedlack to the ALS Clinic for evaluation. Has anyone been there? Thanks, Norma PS. PLS-Friends has really been so helpful to me as I have just been diagnosed with motor neuron disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hey judith, you're not that far away!! my brother lives in greensboro and my aunt in winston-salem and they come visit pretty regularly. you're right; i just joined this group in january. i just started w/dr bedlack and the clinic last august ('04) and i feel really fortunate. because of my age (38), previous neurologists that i saw kept thinking this was MS; when the tests didn't back that up they jumped straight to " well, this must be a psychsomatic disorder. " so you can understand why i'm so high on dr bedlack--he spent the first appointment reassuring me i wasn't crazy or " creating " these symptoms because i was stressed! i have progressed rapidly, which is kind of scary, but i feel like i'm in good hands medically, and i'm trying to do all i can to stay as physically active as possible. however, i did get a loaner power chair from the clinic about 10 days ago and i have to admit it's been great. my daughter plays soccer so it was much easier to get to her game and to chase her and my son around the yard;-) i love the power!! i'm not a medical researcher, which might be a good thing as you say. i was a journalist--i worked for computer magazines like PC Magazine and other trade stuff--but stopped working in november. bad speech and lots of interviews didn't match up too well;-) but i do miss it. i'm excited about the NC Connection, even though it's a ways out, so i can meet some other north carolinians like you. have you been to the clinic yet, judith? or are you seeing dr. bedlack privately? i don't recall what you said. sarah > > > > Norma, > > I live in the triad but also go to Duke and see Dr. Bedlack. I > have been happy there but I am also new to this and next fall will > be my first visit to the ALS clinic. I am slow progressing thus far > and hope it stays that way. I think you will find the people at Duke > treat you with a decent bedside manner unlike some places. > > > > Judith > > > > > > > > --------------------------------- > > > > > > > > > > --------------------------------- > > New Yahoo! Messenger with Voice. Call regular phones from your PC > and save big. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hey judith, you're not that far away!! my brother lives in greensboro and my aunt in winston-salem and they come visit pretty regularly. you're right; i just joined this group in january. i just started w/dr bedlack and the clinic last august ('04) and i feel really fortunate. because of my age (38), previous neurologists that i saw kept thinking this was MS; when the tests didn't back that up they jumped straight to " well, this must be a psychsomatic disorder. " so you can understand why i'm so high on dr bedlack--he spent the first appointment reassuring me i wasn't crazy or " creating " these symptoms because i was stressed! i have progressed rapidly, which is kind of scary, but i feel like i'm in good hands medically, and i'm trying to do all i can to stay as physically active as possible. however, i did get a loaner power chair from the clinic about 10 days ago and i have to admit it's been great. my daughter plays soccer so it was much easier to get to her game and to chase her and my son around the yard;-) i love the power!! i'm not a medical researcher, which might be a good thing as you say. i was a journalist--i worked for computer magazines like PC Magazine and other trade stuff--but stopped working in november. bad speech and lots of interviews didn't match up too well;-) but i do miss it. i'm excited about the NC Connection, even though it's a ways out, so i can meet some other north carolinians like you. have you been to the clinic yet, judith? or are you seeing dr. bedlack privately? i don't recall what you said. sarah > > > > Norma, > > I live in the triad but also go to Duke and see Dr. Bedlack. I > have been happy there but I am also new to this and next fall will > be my first visit to the ALS clinic. I am slow progressing thus far > and hope it stays that way. I think you will find the people at Duke > treat you with a decent bedside manner unlike some places. > > > > Judith > > > > > > > > --------------------------------- > > > > > > > > > > --------------------------------- > > New Yahoo! Messenger with Voice. Call regular phones from your PC > and save big. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hey judith, you're not that far away!! my brother lives in greensboro and my aunt in winston-salem and they come visit pretty regularly. you're right; i just joined this group in january. i just started w/dr bedlack and the clinic last august ('04) and i feel really fortunate. because of my age (38), previous neurologists that i saw kept thinking this was MS; when the tests didn't back that up they jumped straight to " well, this must be a psychsomatic disorder. " so you can understand why i'm so high on dr bedlack--he spent the first appointment reassuring me i wasn't crazy or " creating " these symptoms because i was stressed! i have progressed rapidly, which is kind of scary, but i feel like i'm in good hands medically, and i'm trying to do all i can to stay as physically active as possible. however, i did get a loaner power chair from the clinic about 10 days ago and i have to admit it's been great. my daughter plays soccer so it was much easier to get to her game and to chase her and my son around the yard;-) i love the power!! i'm not a medical researcher, which might be a good thing as you say. i was a journalist--i worked for computer magazines like PC Magazine and other trade stuff--but stopped working in november. bad speech and lots of interviews didn't match up too well;-) but i do miss it. i'm excited about the NC Connection, even though it's a ways out, so i can meet some other north carolinians like you. have you been to the clinic yet, judith? or are you seeing dr. bedlack privately? i don't recall what you said. sarah > > > > Norma, > > I live in the triad but also go to Duke and see Dr. Bedlack. I > have been happy there but I am also new to this and next fall will > be my first visit to the ALS clinic. I am slow progressing thus far > and hope it stays that way. I think you will find the people at Duke > treat you with a decent bedside manner unlike some places. > > > > Judith > > > > > > > > --------------------------------- > > > > > > > > > > --------------------------------- > > New Yahoo! Messenger with Voice. Call regular phones from your PC > and save big. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hey susan, just saying hi to another north carolinian who goes to dr bedlack:-) i'm sorry norma is having to join us but i'm kind of glad she did so i know about you other folks. i was just in clinic on march 14th and dr bedlack told me had a large population of PLSers. guess he was telling the truth! sarah > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hey susan, just saying hi to another north carolinian who goes to dr bedlack:-) i'm sorry norma is having to join us but i'm kind of glad she did so i know about you other folks. i was just in clinic on march 14th and dr bedlack told me had a large population of PLSers. guess he was telling the truth! sarah > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 hey susan, just saying hi to another north carolinian who goes to dr bedlack:-) i'm sorry norma is having to join us but i'm kind of glad she did so i know about you other folks. i was just in clinic on march 14th and dr bedlack told me had a large population of PLSers. guess he was telling the truth! sarah > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Norma!! Welcome!! This IS a wonderful group. Keep with us Norma...I find this group often gets me through my day! Take good care! PS: (Maureen IS a sweetie isn't she?) Di.............PLS........Canada > > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Norma!! Welcome!! This IS a wonderful group. Keep with us Norma...I find this group often gets me through my day! Take good care! PS: (Maureen IS a sweetie isn't she?) Di.............PLS........Canada > > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Norma!! Welcome!! This IS a wonderful group. Keep with us Norma...I find this group often gets me through my day! Take good care! PS: (Maureen IS a sweetie isn't she?) Di.............PLS........Canada > > Hi, my name is Norma. This is my first post, thanks to help from > Maureen. I am going to Duke University Medical Center next week to Dr. > Bedlack to the ALS Clinic for evaluation. Has anyone been there? > Thanks, Norma > PS. PLS-Friends has really been so helpful to me as I have just been > diagnosed with motor neuron disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Di, I plan and hope to be with this group for a long time. It seems to me that you did a very good job of getting yourself and your friends through a very difficult week. So glad that you can rest now. -Norma > > > > Hi, my name is Norma. This is my first post, thanks to help from > > Maureen. I am going to Duke University Medical Center next week to > Dr. > > Bedlack to the ALS Clinic for evaluation. Has anyone been > there? > > Thanks, Norma > > PS. PLS-Friends has really been so helpful to me as I have just been > > diagnosed with motor neuron disease. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 , Thanks for the welcome. I hope to go to the fall gathering as well. See you there.-Norma Quote Link to comment Share on other sites More sharing options...
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