Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Norma - Is your office somewhere around 40th? I remember coming out of the Lincoln Tunnel and taking a right and getting stuck in traffic on a narrow street. I looked to the left and saw the NY Times logo on the front of the building. I had this overwhelming urge to hop out and scream " Norma! Where are you? It's me! " LOL Gladys -- Re: EXCELLENT doctors! Gladys, I am so glad to hear how much you liked this doctor and Beth Israel. I will certainly tell the person in our NY support group who suggested him. I will also let new people in our group know when they are looking for a doctor. Actually, I will let a current attendee know also--who isn't happy with the responses she's currently getting from a new doctor. I'm impressed with the video aspect as well. And, Gladys, the word " sadisfied " certainly resonates with all of us. Thank you, Norma " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject EXCELLENT doctors! 04/08/2008 09:51 PM Please respond to LBDcaregivers@yah oogroups.com We had our visit with the neurologist from Beth Israel today and I can NOT recommend he and his fellow highly enough. I have NEVER been treated with so much respect and spoken to so openly and honestly without condescension by any doctor in my LIFE. More importantly, they both spoke directly to Mom instead of talking about her like she wasn't in the room. My sister and I and Mom couldn't stop raving about them all the way home. It took three hours to get there (rush hour) and two hours to get home and spending time with these two doctors was worth every minute! We told them we learned about them from a referral from a member of this group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group. One of the doctors asked me to email her the link to the group and the information about it so she can refer other patients and their families here They were extremely knowledgeable about LBD and confirmed all you have all taught me and were amazed at how much I knew. I told them I learned it all from you. Basically, they confirmed that they believe Mom has LBD but, that they couldn't state it 100% without post mortem test results. I learned so much today. I finally understand what makes LBD different from Alzheimer's (not symptoms but the way the Lewy Body's act and are disbursed). They have recommended getting rid of the Lunesta and the Benedryl and introducing Seroquel, but they want to wait until the doctor gets Mom off her BP meds first because her BP was low (105/55) and they don't want to risk the Seroquel dropping it too low. They also warned us that, at first, the Seroquel might make things worse so we should do it over a weekend when we don't have to go to work. Also, they explained the cause of the " Post Nasal Drip " issue. It has to do with the slowed swallowing of our LBD loved ones. Apparently, along with the cognitive processes slowing, other things like blinking and swallowing also slow down dramatically. As the swallow less and less often the saliva and other stuff builds up in the back of the throat causing the build up of the mucus. The were unsure what to do about it since we have already tried what they recommended and it didn't help, but they are willing to refer Mom to a great ENT there are Beth Israel who might have some ideas. We came home feeling satisfied and " sad " isfied. I know you all know what I mean. I told the doctor that my goal is to keep Mom home until the end and he was very honest and told me that would be very hard to do. (That was before I told him I also have a disabled child.) I'm not sure what the future will bring, but I'm placing it all in God's hands and just praying He will give me the strength I need to care for both my Mom and my daughter. I can't thank you all enough for all you have taught me and continue to teach me. I pray that I'll be able to do the same for others one day. (Oh, one of the things I forgot to mention is that they videotaped Mom for their Wednesday morning " video rounds " . They present patients they have seen to the entire department staff and chair on Wednesday mornings for input and confirmation of diagnosis. Among those who will be viewing Mom's video is the department chair who is a member of the Board of Directors of the Fox Foundation. I feel she is really in the best of medical hands now.) Thank you all again! Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Yes, Gladys, that was my building! I may not have heard you since I work on the 16th floor, but you could have tried. " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject Re: EXCELLENT 04/10/2008 11:54 doctors! - Norma AM Please respond to LBDcaregivers@yah oogroups.com Norma - Is your office somewhere around 40th? I remember coming out of the Lincoln Tunnel and taking a right and getting stuck in traffic on a narrow street. I looked to the left and saw the NY Times logo on the front of the building. I had this overwhelming urge to hop out and scream " Norma! Where are you? It's me! " LOL Gladys -- Re: EXCELLENT doctors! Gladys, I am so glad to hear how much you liked this doctor and Beth Israel. I will certainly tell the person in our NY support group who suggested him. I will also let new people in our group know when they are looking for a doctor. Actually, I will let a current attendee know also--who isn't happy with the responses she's currently getting from a new doctor. I'm impressed with the video aspect as well. And, Gladys, the word " sadisfied " certainly resonates with all of us. Thank you, Norma " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject EXCELLENT doctors! 04/08/2008 09:51 PM Please respond to LBDcaregivers@yah oogroups.com We had our visit with the neurologist from Beth Israel today and I can NOT recommend he and his fellow highly enough. I have NEVER been treated with so much respect and spoken to so openly and honestly without condescension by any doctor in my LIFE. More importantly, they both spoke directly to Mom instead of talking about her like she wasn't in the room. My sister and I and Mom couldn't stop raving about them all the way home. It took three hours to get there (rush hour) and two hours to get home and spending time with these two doctors was worth every minute! We told them we learned about them from a referral from a member of this group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group. One of the doctors asked me to email her the link to the group and the information about it so she can refer other patients and their families here They were extremely knowledgeable about LBD and confirmed all you have all taught me and were amazed at how much I knew. I told them I learned it all from you. Basically, they confirmed that they believe Mom has LBD but, that they couldn't state it 100% without post mortem test results. I learned so much today. I finally understand what makes LBD different from Alzheimer's (not symptoms but the way the Lewy Body's act and are disbursed). They have recommended getting rid of the Lunesta and the Benedryl and introducing Seroquel, but they want to wait until the doctor gets Mom off her BP meds first because her BP was low (105/55) and they don't want to risk the Seroquel dropping it too low. They also warned us that, at first, the Seroquel might make things worse so we should do it over a weekend when we don't have to go to work. Also, they explained the cause of the " Post Nasal Drip " issue. It has to do with the slowed swallowing of our LBD loved ones. Apparently, along with the cognitive processes slowing, other things like blinking and swallowing also slow down dramatically. As the swallow less and less often the saliva and other stuff builds up in the back of the throat causing the build up of the mucus. The were unsure what to do about it since we have already tried what they recommended and it didn't help, but they are willing to refer Mom to a great ENT there are Beth Israel who might have some ideas. We came home feeling satisfied and " sad " isfied. I know you all know what I mean. I told the doctor that my goal is to keep Mom home until the end and he was very honest and told me that would be very hard to do. (That was before I told him I also have a disabled child.) I'm not sure what the future will bring, but I'm placing it all in God's hands and just praying He will give me the strength I need to care for both my Mom and my daughter. I can't thank you all enough for all you have taught me and continue to teach me. I pray that I'll be able to do the same for others one day. (Oh, one of the things I forgot to mention is that they videotaped Mom for their Wednesday morning " video rounds " . They present patients they have seen to the entire department staff and chair on Wednesday mornings for input and confirmation of diagnosis. Among those who will be viewing Mom's video is the department chair who is a member of the Board of Directors of the Fox Foundation. I feel she is really in the best of medical hands now.) Thank you all again! Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 LOL You know, one of these day I'm going to show up for that support group meeting and surprise you! LOL Where do you meet? Gladys -- Re: EXCELLENT doctors! Gladys, I am so glad to hear how much you liked this doctor and Beth Israel. I will certainly tell the person in our NY support group who suggested him. I will also let new people in our group know when they are looking for a doctor. Actually, I will let a current attendee know also--who isn't happy with the responses she's currently getting from a new doctor. I'm impressed with the video aspect as well. And, Gladys, the word " sadisfied " certainly resonates with all of us. Thank you, Norma " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject EXCELLENT doctors! 04/08/2008 09:51 PM Please respond to LBDcaregivers@yah oogroups.com We had our visit with the neurologist from Beth Israel today and I can NOT recommend he and his fellow highly enough. I have NEVER been treated with so much respect and spoken to so openly and honestly without condescension by any doctor in my LIFE. More importantly, they both spoke directly to Mom instead of talking about her like she wasn't in the room. My sister and I and Mom couldn't stop raving about them all the way home. It took three hours to get there (rush hour) and two hours to get home and spending time with these two doctors was worth every minute! We told them we learned about them from a referral from a member of this group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group. One of the doctors asked me to email her the link to the group and the information about it so she can refer other patients and their families here They were extremely knowledgeable about LBD and confirmed all you have all taught me and were amazed at how much I knew. I told them I learned it all from you. Basically, they confirmed that they believe Mom has LBD but, that they couldn't state it 100% without post mortem test results. I learned so much today. I finally understand what makes LBD different from Alzheimer's (not symptoms but the way the Lewy Body's act and are disbursed). They have recommended getting rid of the Lunesta and the Benedryl and introducing Seroquel, but they want to wait until the doctor gets Mom off her BP meds first because her BP was low (105/55) and they don't want to risk the Seroquel dropping it too low. They also warned us that, at first, the Seroquel might make things worse so we should do it over a weekend when we don't have to go to work. Also, they explained the cause of the " Post Nasal Drip " issue. It has to do with the slowed swallowing of our LBD loved ones. Apparently, along with the cognitive processes slowing, other things like blinking and swallowing also slow down dramatically. As the swallow less and less often the saliva and other stuff builds up in the back of the throat causing the build up of the mucus. The were unsure what to do about it since we have already tried what they recommended and it didn't help, but they are willing to refer Mom to a great ENT there are Beth Israel who might have some ideas. We came home feeling satisfied and " sad " isfied. I know you all know what I mean. I told the doctor that my goal is to keep Mom home until the end and he was very honest and told me that would be very hard to do. (That was before I told him I also have a disabled child.) I'm not sure what the future will bring, but I'm placing it all in God's hands and just praying He will give me the strength I need to care for both my Mom and my daughter. I can't thank you all enough for all you have taught me and continue to teach me. I pray that I'll be able to do the same for others one day. (Oh, one of the things I forgot to mention is that they videotaped Mom for their Wednesday morning " video rounds " . They present patients they have seen to the entire department staff and chair on Wednesday mornings for input and confirmation of diagnosis. Among those who will be viewing Mom's video is the department chair who is a member of the Board of Directors of the Fox Foundation. I feel she is really in the best of medical hands now.) Thank you all again! Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 right there " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject Re: EXCELLENT 04/10/2008 02:00 doctors! - Norma PM Please respond to LBDcaregivers@yah oogroups.com LOL You know, one of these day I'm going to show up for that support group meeting and surprise you! LOL Where do you meet? Gladys -- Re: EXCELLENT doctors! Gladys, I am so glad to hear how much you liked this doctor and Beth Israel. I will certainly tell the person in our NY support group who suggested him. I will also let new people in our group know when they are looking for a doctor. Actually, I will let a current attendee know also--who isn't happy with the responses she's currently getting from a new doctor. I'm impressed with the video aspect as well. And, Gladys, the word " sadisfied " certainly resonates with all of us. Thank you, Norma " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject EXCELLENT doctors! 04/08/2008 09:51 PM Please respond to LBDcaregivers@yah oogroups.com We had our visit with the neurologist from Beth Israel today and I can NOT recommend he and his fellow highly enough. I have NEVER been treated with so much respect and spoken to so openly and honestly without condescension by any doctor in my LIFE. More importantly, they both spoke directly to Mom instead of talking about her like she wasn't in the room. My sister and I and Mom couldn't stop raving about them all the way home. It took three hours to get there (rush hour) and two hours to get home and spending time with these two doctors was worth every minute! We told them we learned about them from a referral from a member of this group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group. One of the doctors asked me to email her the link to the group and the information about it so she can refer other patients and their families here They were extremely knowledgeable about LBD and confirmed all you have all taught me and were amazed at how much I knew. I told them I learned it all from you. Basically, they confirmed that they believe Mom has LBD but, that they couldn't state it 100% without post mortem test results. I learned so much today. I finally understand what makes LBD different from Alzheimer's (not symptoms but the way the Lewy Body's act and are disbursed). They have recommended getting rid of the Lunesta and the Benedryl and introducing Seroquel, but they want to wait until the doctor gets Mom off her BP meds first because her BP was low (105/55) and they don't want to risk the Seroquel dropping it too low. They also warned us that, at first, the Seroquel might make things worse so we should do it over a weekend when we don't have to go to work. Also, they explained the cause of the " Post Nasal Drip " issue. It has to do with the slowed swallowing of our LBD loved ones. Apparently, along with the cognitive processes slowing, other things like blinking and swallowing also slow down dramatically. As the swallow less and less often the saliva and other stuff builds up in the back of the throat causing the build up of the mucus. The were unsure what to do about it since we have already tried what they recommended and it didn't help, but they are willing to refer Mom to a great ENT there are Beth Israel who might have some ideas. We came home feeling satisfied and " sad " isfied. I know you all know what I mean. I told the doctor that my goal is to keep Mom home until the end and he was very honest and told me that would be very hard to do. (That was before I told him I also have a disabled child.) I'm not sure what the future will bring, but I'm placing it all in God's hands and just praying He will give me the strength I need to care for both my Mom and my daughter. I can't thank you all enough for all you have taught me and continue to teach me. I pray that I'll be able to do the same for others one day. (Oh, one of the things I forgot to mention is that they videotaped Mom for their Wednesday morning " video rounds " . They present patients they have seen to the entire department staff and chair on Wednesday mornings for input and confirmation of diagnosis. Among those who will be viewing Mom's video is the department chair who is a member of the Board of Directors of the Fox Foundation. I feel she is really in the best of medical hands now.) Thank you all again! Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 YEA!!! Now, we know I can find it! LOL I can park at Port Authority and walk Gladys -- Re: EXCELLENT doctors! Gladys, I am so glad to hear how much you liked this doctor and Beth Israel. I will certainly tell the person in our NY support group who suggested him. I will also let new people in our group know when they are looking for a doctor. Actually, I will let a current attendee know also--who isn't happy with the responses she's currently getting from a new doctor. I'm impressed with the video aspect as well. And, Gladys, the word " sadisfied " certainly resonates with all of us. Thank you, Norma " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject EXCELLENT doctors! 04/08/2008 09:51 PM Please respond to LBDcaregivers@yah oogroups.com We had our visit with the neurologist from Beth Israel today and I can NOT recommend he and his fellow highly enough. I have NEVER been treated with so much respect and spoken to so openly and honestly without condescension by any doctor in my LIFE. More importantly, they both spoke directly to Mom instead of talking about her like she wasn't in the room. My sister and I and Mom couldn't stop raving about them all the way home. It took three hours to get there (rush hour) and two hours to get home and spending time with these two doctors was worth every minute! We told them we learned about them from a referral from a member of this group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group. One of the doctors asked me to email her the link to the group and the information about it so she can refer other patients and their families here They were extremely knowledgeable about LBD and confirmed all you have all taught me and were amazed at how much I knew. I told them I learned it all from you. Basically, they confirmed that they believe Mom has LBD but, that they couldn't state it 100% without post mortem test results. I learned so much today. I finally understand what makes LBD different from Alzheimer's (not symptoms but the way the Lewy Body's act and are disbursed). They have recommended getting rid of the Lunesta and the Benedryl and introducing Seroquel, but they want to wait until the doctor gets Mom off her BP meds first because her BP was low (105/55) and they don't want to risk the Seroquel dropping it too low. They also warned us that, at first, the Seroquel might make things worse so we should do it over a weekend when we don't have to go to work. Also, they explained the cause of the " Post Nasal Drip " issue. It has to do with the slowed swallowing of our LBD loved ones. Apparently, along with the cognitive processes slowing, other things like blinking and swallowing also slow down dramatically. As the swallow less and less often the saliva and other stuff builds up in the back of the throat causing the build up of the mucus. The were unsure what to do about it since we have already tried what they recommended and it didn't help, but they are willing to refer Mom to a great ENT there are Beth Israel who might have some ideas. We came home feeling satisfied and " sad " isfied. I know you all know what I mean. I told the doctor that my goal is to keep Mom home until the end and he was very honest and told me that would be very hard to do. (That was before I told him I also have a disabled child.) I'm not sure what the future will bring, but I'm placing it all in God's hands and just praying He will give me the strength I need to care for both my Mom and my daughter. I can't thank you all enough for all you have taught me and continue to teach me. I pray that I'll be able to do the same for others one day. (Oh, one of the things I forgot to mention is that they videotaped Mom for their Wednesday morning " video rounds " . They present patients they have seen to the entire department staff and chair on Wednesday mornings for input and confirmation of diagnosis. Among those who will be viewing Mom's video is the department chair who is a member of the Board of Directors of the Fox Foundation. I feel she is really in the best of medical hands now.) Thank you all again! Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Yes, Gladys, it's very convenient. I hope it will work for you one of these months soon. " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject Re: EXCELLENT 04/10/2008 03:02 doctors! - Norma PM Please respond to LBDcaregivers@yah oogroups.com YEA!!! Now, we know I can find it! LOL I can park at Port Authority and walk Gladys -- Re: EXCELLENT doctors! Gladys, I am so glad to hear how much you liked this doctor and Beth Israel. I will certainly tell the person in our NY support group who suggested him. I will also let new people in our group know when they are looking for a doctor. Actually, I will let a current attendee know also--who isn't happy with the responses she's currently getting from a new doctor. I'm impressed with the video aspect as well. And, Gladys, the word " sadisfied " certainly resonates with all of us. Thank you, Norma " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject EXCELLENT doctors! 04/08/2008 09:51 PM Please respond to LBDcaregivers@yah oogroups.com We had our visit with the neurologist from Beth Israel today and I can NOT recommend he and his fellow highly enough. I have NEVER been treated with so much respect and spoken to so openly and honestly without condescension by any doctor in my LIFE. More importantly, they both spoke directly to Mom instead of talking about her like she wasn't in the room. My sister and I and Mom couldn't stop raving about them all the way home. It took three hours to get there (rush hour) and two hours to get home and spending time with these two doctors was worth every minute! We told them we learned about them from a referral from a member of this group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group. One of the doctors asked me to email her the link to the group and the information about it so she can refer other patients and their families here They were extremely knowledgeable about LBD and confirmed all you have all taught me and were amazed at how much I knew. I told them I learned it all from you. Basically, they confirmed that they believe Mom has LBD but, that they couldn't state it 100% without post mortem test results. I learned so much today. I finally understand what makes LBD different from Alzheimer's (not symptoms but the way the Lewy Body's act and are disbursed). They have recommended getting rid of the Lunesta and the Benedryl and introducing Seroquel, but they want to wait until the doctor gets Mom off her BP meds first because her BP was low (105/55) and they don't want to risk the Seroquel dropping it too low. They also warned us that, at first, the Seroquel might make things worse so we should do it over a weekend when we don't have to go to work. Also, they explained the cause of the " Post Nasal Drip " issue. It has to do with the slowed swallowing of our LBD loved ones. Apparently, along with the cognitive processes slowing, other things like blinking and swallowing also slow down dramatically. As the swallow less and less often the saliva and other stuff builds up in the back of the throat causing the build up of the mucus. The were unsure what to do about it since we have already tried what they recommended and it didn't help, but they are willing to refer Mom to a great ENT there are Beth Israel who might have some ideas. We came home feeling satisfied and " sad " isfied. I know you all know what I mean. I told the doctor that my goal is to keep Mom home until the end and he was very honest and told me that would be very hard to do. (That was before I told him I also have a disabled child.) I'm not sure what the future will bring, but I'm placing it all in God's hands and just praying He will give me the strength I need to care for both my Mom and my daughter. I can't thank you all enough for all you have taught me and continue to teach me. I pray that I'll be able to do the same for others one day. (Oh, one of the things I forgot to mention is that they videotaped Mom for their Wednesday morning " video rounds " . They present patients they have seen to the entire department staff and chair on Wednesday mornings for input and confirmation of diagnosis. Among those who will be viewing Mom's video is the department chair who is a member of the Board of Directors of the Fox Foundation. I feel she is really in the best of medical hands now.) Thank you all again! Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 I usually stay at a hotel on 42nd and I was there 3 times over the past 3 months. It never crossed my mind to stand in front the NY Times and yell for you Norma. I'll definitely do that when I have my next show .... which may not be too soon. > > > Yes, Gladys, that was my building! I may not have heard you since I work > on the 16th floor, but you could have tried. > Quote Link to comment Share on other sites More sharing options...
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