Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Welcome to the group and . This group has become a lifeline of information and friends in the short time that I joined which has only been a few months. These people have provided medical information and moral support for which I am very grateful and above all the humour you will find here is priceless and is just what one needs when we are having a bad day. I too am an only child and am going through a rough time with my Mom who is hospitalized with severe emphasema and pulmonary disease and I now have to address the fact that a Nursing Home may be in the near future for her. It is going to devastate her and be very tough on me so you can bet I will be drawing strength and support down the road from my PLS-friends. My thoughts are with you and your husband and am glad you have found the website. May the support of knowing others care help you through these difficult times. Sincerely, Jo (Thunder Bay, Ontario, Canada) Introduction > My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. > > Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! > > So, it's nice to " meet " you, and I hope to hear from you soon. > > Peace, and may all be auspicious, > > > > Ohm Ma Ni Pad Me Hum > " May all being be free from suffering and the causes of suffering " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Rita: Very well said! You are so wise! Hugs, Laurel Re: Introduction Hi : Welcome to the group, this is the place to be. I am 66 years old, live in New Hampshire. I was in my early 30's when things started to happen. Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones. For years my progression has been very slow, and I have been fortunate enough to have met at least 25 PLSer's in the past few years, and have learned at this disease strikes many people in different ways, some slower like myself, and other's get hit hard and fast as you will learn as you get to know us all better. We all have different approaches to how to handle having PLS and mine is eliminate as much stress as possible from your life, don't fight it as it can't be reversed, but can be controlled if you listen to your body. You as a caregiver have a big role in how he handles having PLS. Live life as normal as you can, don't make an invalid out of him. Let him do the things he can do, regardless if you think you can do it better or faster (like my dear husband does). If he needs you, be there, but don't coddle him, if you understand what I am saying. This is not a life threatening disease, just life changing. Just take it one day at a time. There is life after a PLS diagnosis. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Rita: Very well said! You are so wise! Hugs, Laurel Re: Introduction Hi : Welcome to the group, this is the place to be. I am 66 years old, live in New Hampshire. I was in my early 30's when things started to happen. Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones. For years my progression has been very slow, and I have been fortunate enough to have met at least 25 PLSer's in the past few years, and have learned at this disease strikes many people in different ways, some slower like myself, and other's get hit hard and fast as you will learn as you get to know us all better. We all have different approaches to how to handle having PLS and mine is eliminate as much stress as possible from your life, don't fight it as it can't be reversed, but can be controlled if you listen to your body. You as a caregiver have a big role in how he handles having PLS. Live life as normal as you can, don't make an invalid out of him. Let him do the things he can do, regardless if you think you can do it better or faster (like my dear husband does). If he needs you, be there, but don't coddle him, if you understand what I am saying. This is not a life threatening disease, just life changing. Just take it one day at a time. There is life after a PLS diagnosis. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Rita: Very well said! You are so wise! Hugs, Laurel Re: Introduction Hi : Welcome to the group, this is the place to be. I am 66 years old, live in New Hampshire. I was in my early 30's when things started to happen. Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones. For years my progression has been very slow, and I have been fortunate enough to have met at least 25 PLSer's in the past few years, and have learned at this disease strikes many people in different ways, some slower like myself, and other's get hit hard and fast as you will learn as you get to know us all better. We all have different approaches to how to handle having PLS and mine is eliminate as much stress as possible from your life, don't fight it as it can't be reversed, but can be controlled if you listen to your body. You as a caregiver have a big role in how he handles having PLS. Live life as normal as you can, don't make an invalid out of him. Let him do the things he can do, regardless if you think you can do it better or faster (like my dear husband does). If he needs you, be there, but don't coddle him, if you understand what I am saying. This is not a life threatening disease, just life changing. Just take it one day at a time. There is life after a PLS diagnosis. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi , Welcome to our group. You might find some interesting information about other PLSers at the PLS Awareness site: www.geocities.com/mdmfoo/pls.html Just click on PLSers Data. Also, the als-pls.org site has a research page that will show you some research that in now being done. I need to update the site to include Dr. Fink's work, but it has the Northwestern/Siddique blood marker study and the studies at NIH. How is your husband affected at this time? My first reaction to the PLS diagnosis was similar to yours. After a while you adjust and accept the diagnosis. Time is our best friend with PLS. But only if we do something valuable with the time we are given. So " Live the Day " and do whatever you can for research. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Introduction My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! So, it's nice to " meet " you, and I hope to hear from you soon. Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all being be free from suffering and the causes of suffering " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi , Welcome to our group. You might find some interesting information about other PLSers at the PLS Awareness site: www.geocities.com/mdmfoo/pls.html Just click on PLSers Data. Also, the als-pls.org site has a research page that will show you some research that in now being done. I need to update the site to include Dr. Fink's work, but it has the Northwestern/Siddique blood marker study and the studies at NIH. How is your husband affected at this time? My first reaction to the PLS diagnosis was similar to yours. After a while you adjust and accept the diagnosis. Time is our best friend with PLS. But only if we do something valuable with the time we are given. So " Live the Day " and do whatever you can for research. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Introduction My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! So, it's nice to " meet " you, and I hope to hear from you soon. Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all being be free from suffering and the causes of suffering " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 That " no coddling " advice is by far the hardest to take, but I'm learing. Only the second time he's hurt me in our almost 5 year marriage was when I called a doctor to ask about his cough. The doctor insisted he see , and had a complete hissy, saying he's already losing enough of his independence without me going " behind my back. " Ouch. I haven't made that mistake since. If he needs me, he'll ask. Other than that he's on his own, sister! Peace, and may all be auspicious Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering " Re: Introduction Hi : Welcome to the group, this is the place to be. I am 66 years old, live in New Hampshire. I was in my early 30's when things started to happen. Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones. For years my progression has been very slow, and I have been fortunate enough to have met at least 25 PLSer's in the past few years, and have learned at this disease strikes many people in different ways, some slower like myself, and other's get hit hard and fast as you will learn as you get to know us all better. We all have different approaches to how to handle having PLS and mine is eliminate as much stress as possible from your life, don't fight it as it can't be reversed, but can be controlled if you listen to your body. You as a caregiver have a big role in how he handles having PLS. Live life as normal as you can, don't make an invalid out of him. Let him do the things he can do, regardless if you think you can do it better or faster (like my dear husband does). If he needs you, be there, but don't coddle him, if you understand what I am saying. This is not a life threatening disease, just life changing. Just take it one day at a time. There is life after a PLS diagnosis. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 That " no coddling " advice is by far the hardest to take, but I'm learing. Only the second time he's hurt me in our almost 5 year marriage was when I called a doctor to ask about his cough. The doctor insisted he see , and had a complete hissy, saying he's already losing enough of his independence without me going " behind my back. " Ouch. I haven't made that mistake since. If he needs me, he'll ask. Other than that he's on his own, sister! Peace, and may all be auspicious Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering " Re: Introduction Hi : Welcome to the group, this is the place to be. I am 66 years old, live in New Hampshire. I was in my early 30's when things started to happen. Took me 2 1/2 years to get a diagnosis. I was one of the lucky ones. For years my progression has been very slow, and I have been fortunate enough to have met at least 25 PLSer's in the past few years, and have learned at this disease strikes many people in different ways, some slower like myself, and other's get hit hard and fast as you will learn as you get to know us all better. We all have different approaches to how to handle having PLS and mine is eliminate as much stress as possible from your life, don't fight it as it can't be reversed, but can be controlled if you listen to your body. You as a caregiver have a big role in how he handles having PLS. Live life as normal as you can, don't make an invalid out of him. Let him do the things he can do, regardless if you think you can do it better or faster (like my dear husband does). If he needs you, be there, but don't coddle him, if you understand what I am saying. This is not a life threatening disease, just life changing. Just take it one day at a time. There is life after a PLS diagnosis. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Thanks for the websites, ! As for 's condition, he believes he'll probably be wheelchair bound within the next year. It's his legs most affected. He also has a cough that won't go away. That drives him bananas. But we think right now it's post-nasal drip since he is the allergy king. His right arm is more affected than left, though both are weakening in grip for sure. His lifting ability is pretty much completely gone. He can't lift his own walker. Another thing that's getting on his nerves. Pretty much everything his body does is getting on his nerves lately, but it's understandable since he's a former Ai Ki Do student, police officer, and avid backpacker, cyclist and runner. This time last year he was on a trail marked " Moderate to Difficult " with a 60 pound pack on his back. I keep trying to remind him that sometime, someday, when he and I both are more accepting of the situation, we will learn to get enjoyment out of life just like before, just in different ways. Peace, and may all be auspicious Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering " Introduction My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! So, it's nice to " meet " you, and I hope to hear from you soon. Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all being be free from suffering and the causes of suffering " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Thanks for the websites, ! As for 's condition, he believes he'll probably be wheelchair bound within the next year. It's his legs most affected. He also has a cough that won't go away. That drives him bananas. But we think right now it's post-nasal drip since he is the allergy king. His right arm is more affected than left, though both are weakening in grip for sure. His lifting ability is pretty much completely gone. He can't lift his own walker. Another thing that's getting on his nerves. Pretty much everything his body does is getting on his nerves lately, but it's understandable since he's a former Ai Ki Do student, police officer, and avid backpacker, cyclist and runner. This time last year he was on a trail marked " Moderate to Difficult " with a 60 pound pack on his back. I keep trying to remind him that sometime, someday, when he and I both are more accepting of the situation, we will learn to get enjoyment out of life just like before, just in different ways. Peace, and may all be auspicious Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering " Introduction My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! So, it's nice to " meet " you, and I hope to hear from you soon. Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all being be free from suffering and the causes of suffering " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Thanks for the websites, ! As for 's condition, he believes he'll probably be wheelchair bound within the next year. It's his legs most affected. He also has a cough that won't go away. That drives him bananas. But we think right now it's post-nasal drip since he is the allergy king. His right arm is more affected than left, though both are weakening in grip for sure. His lifting ability is pretty much completely gone. He can't lift his own walker. Another thing that's getting on his nerves. Pretty much everything his body does is getting on his nerves lately, but it's understandable since he's a former Ai Ki Do student, police officer, and avid backpacker, cyclist and runner. This time last year he was on a trail marked " Moderate to Difficult " with a 60 pound pack on his back. I keep trying to remind him that sometime, someday, when he and I both are more accepting of the situation, we will learn to get enjoyment out of life just like before, just in different ways. Peace, and may all be auspicious Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering " Introduction My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! So, it's nice to " meet " you, and I hope to hear from you soon. Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all being be free from suffering and the causes of suffering " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi : Frustration is one of the biggest obstacles to overcome, not only for the person with PLS but also caregivers, family and friends. It must be extremely hard for being he was so active before this. My heart goes out to you both. I have been active all my life also, but the difference is I will soon be 60 years old and have had a relatively good life. When you are young you must feel as though you are being robbed of so much. The group is a great place to vent your frustrations as we are all in the same boat. Take care. Jo! (Thunder Bay, Ontario) Introduction > > > My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. > > Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! > > So, it's nice to " meet " you, and I hope to hear from you soon. > > Peace, and may all be auspicious, > > > > Ohm Ma Ni Pad Me Hum > " May all being be free from suffering and the causes of suffering " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi : Frustration is one of the biggest obstacles to overcome, not only for the person with PLS but also caregivers, family and friends. It must be extremely hard for being he was so active before this. My heart goes out to you both. I have been active all my life also, but the difference is I will soon be 60 years old and have had a relatively good life. When you are young you must feel as though you are being robbed of so much. The group is a great place to vent your frustrations as we are all in the same boat. Take care. Jo! (Thunder Bay, Ontario) Introduction > > > My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. > > Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! > > So, it's nice to " meet " you, and I hope to hear from you soon. > > Peace, and may all be auspicious, > > > > Ohm Ma Ni Pad Me Hum > " May all being be free from suffering and the causes of suffering " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi : Frustration is one of the biggest obstacles to overcome, not only for the person with PLS but also caregivers, family and friends. It must be extremely hard for being he was so active before this. My heart goes out to you both. I have been active all my life also, but the difference is I will soon be 60 years old and have had a relatively good life. When you are young you must feel as though you are being robbed of so much. The group is a great place to vent your frustrations as we are all in the same boat. Take care. Jo! (Thunder Bay, Ontario) Introduction > > > My name is , and my husband has just been diagnosed with PLS after a long long round of tests and a first diagnosis of ALS. We live in Tennessee, but we are seeking treatment at the Carolinas ALS institute. Our first visit was on the 28th of October, when Dr. Rosenfeld gave us the news that had PLS instead of ALS. We still haven't decided if it's good or bad news, frankly. But we are going to enroll in just about any study we find, and are going to try to make the best of things. is 34 and I am 35. We have no children, though we desperately wanted them. I went through many many infertility treatments. But now I guess it's a blessing. > > Anyway, I just wanted to say hello and hope that I will find some support. I'm sorely in need of it. My mother has terminal cancer and my father is slowly dying in a nursing home, and I am an only child. Feeling pretty isolated, to say the least! > > So, it's nice to " meet " you, and I hope to hear from you soon. > > Peace, and may all be auspicious, > > > > Ohm Ma Ni Pad Me Hum > " May all being be free from suffering and the causes of suffering " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Hi , I can understand Mike's feelings even though I am 64 years old. A little more than a year ago I was still hoping to make it back on to the Appalacian trail someday. I was not in great shape or anything - just someone who loved to walk and thought her legs would never fail her. Now I am waiting for approval of my request for an electric wheelchair. When I am sitting down sometimes I still find it hard to believe that I cannot get up and walk across the room. Jane from Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Hi , I can understand Mike's feelings even though I am 64 years old. A little more than a year ago I was still hoping to make it back on to the Appalacian trail someday. I was not in great shape or anything - just someone who loved to walk and thought her legs would never fail her. Now I am waiting for approval of my request for an electric wheelchair. When I am sitting down sometimes I still find it hard to believe that I cannot get up and walk across the room. Jane from Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Hi , I can understand Mike's feelings even though I am 64 years old. A little more than a year ago I was still hoping to make it back on to the Appalacian trail someday. I was not in great shape or anything - just someone who loved to walk and thought her legs would never fail her. Now I am waiting for approval of my request for an electric wheelchair. When I am sitting down sometimes I still find it hard to believe that I cannot get up and walk across the room. Jane from Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 That's biggest " mourning " I think. I guess right now it's all so new that we'll be vacillating between grief and panic. At least I know I am. I have never been very good at watching anyone suffer. It hurts me in my heart so very much that it's often to my detriment. Work has become extremely difficult because I can't seem to get my mind off of , my mom, my dad, and of course....me. I am so scared sometimes. I am scared that I'm going to have a nervous breakdown or something and be completely unable to help anyone at all. But it's all early in the process, so I'm sure I'll adjust day by day. I'm glad I found you guys, though. At least there are others who " get it. " I'm sorry there has to be others at all though. What a mean disease. Of course, what disease isn't?? Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering. " Re: Introduction Hi , I can understand Mike's feelings even though I am 64 years old. A little more than a year ago I was still hoping to make it back on to the Appalacian trail someday. I was not in great shape or anything - just someone who loved to walk and thought her legs would never fail her. Now I am waiting for approval of my request for an electric wheelchair. When I am sitting down sometimes I still find it hard to believe that I cannot get up and walk across the room. Jane from Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 That's biggest " mourning " I think. I guess right now it's all so new that we'll be vacillating between grief and panic. At least I know I am. I have never been very good at watching anyone suffer. It hurts me in my heart so very much that it's often to my detriment. Work has become extremely difficult because I can't seem to get my mind off of , my mom, my dad, and of course....me. I am so scared sometimes. I am scared that I'm going to have a nervous breakdown or something and be completely unable to help anyone at all. But it's all early in the process, so I'm sure I'll adjust day by day. I'm glad I found you guys, though. At least there are others who " get it. " I'm sorry there has to be others at all though. What a mean disease. Of course, what disease isn't?? Peace, and may all be auspicious, Ohm Ma Ni Pad Me Hum " May all beings be free from suffering and the causes of suffering. " Re: Introduction Hi , I can understand Mike's feelings even though I am 64 years old. A little more than a year ago I was still hoping to make it back on to the Appalacian trail someday. I was not in great shape or anything - just someone who loved to walk and thought her legs would never fail her. Now I am waiting for approval of my request for an electric wheelchair. When I am sitting down sometimes I still find it hard to believe that I cannot get up and walk across the room. Jane from Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 , This can be quite overwhelming but a friend wrote, " How do you eat an elephant? " The answer is ....one bite at a time. When I have a job that's too big to handle, I take small " bites " of it and do the best I can. I can no longer cut a cabbage head in half so I find a spot on it and just make small cuts. Eventually it all gets cut up! Silly way to relate to such an awsome reality of an illness but it works for me. Try to focus on the good things that are still in your life. Find some humor in everyday things. My husband and I have lots to live for and laugh about....ourselves in particular. He goes in for brain tumor surgery Nov. 29th and we are prepared for a long recovery. He and I still find joy in each day. (This is his second time around for this surgery.) Peace and blessings, Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 Patti, I was diagnosed with infiltrating ductal carcinoma in May 1990 and I am doing fine. You could call the American Cancer Society and they will send out lots of info. Komen Foundation may have some also. In the meantime go to www.webmd.com and type it in there. Also there is a good book call Choices by n Morra dn Eve Potts. If you go to www.half.com and type that in it should pull up the latest edition. Its the 3rd one I believe. I want to get it when I get a chance. It has ALL cancers but also explains everything in detail and has questions to ask the dr etc. I have the first two editions but they are becoming outdated with all the new treatments etc. May 6th does seem like a long time. Is there anyway you could get them to push the date up? If your aunt is stressed out I would call and let them know. Its the not knowing and waiting that is extremely hard. She is very lucky to have you. I will keep you both in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com introduction > Hi my name is Patti. Yesterday my aunt found out that she has > infiltrating duct carcinoma. I don't know that much about breast > cancer, so I was wondering if someone could please send me some > information on it. One thing that I am curious about is, she found > out yesterday and they can't get her into see a surgeon until May > 6th. Doesn't that seem like a long time to wait? Or am I just > emotional, would not be the first for me re: over re-acting. What > kinds of things should we expect. > > Thank you in advance for any help you can give. > > Patti > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 Patti, I was diagnosed with infiltrating ductal carcinoma in May 1990 and I am doing fine. You could call the American Cancer Society and they will send out lots of info. Komen Foundation may have some also. In the meantime go to www.webmd.com and type it in there. Also there is a good book call Choices by n Morra dn Eve Potts. If you go to www.half.com and type that in it should pull up the latest edition. Its the 3rd one I believe. I want to get it when I get a chance. It has ALL cancers but also explains everything in detail and has questions to ask the dr etc. I have the first two editions but they are becoming outdated with all the new treatments etc. May 6th does seem like a long time. Is there anyway you could get them to push the date up? If your aunt is stressed out I would call and let them know. Its the not knowing and waiting that is extremely hard. She is very lucky to have you. I will keep you both in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com introduction > Hi my name is Patti. Yesterday my aunt found out that she has > infiltrating duct carcinoma. I don't know that much about breast > cancer, so I was wondering if someone could please send me some > information on it. One thing that I am curious about is, she found > out yesterday and they can't get her into see a surgeon until May > 6th. Doesn't that seem like a long time to wait? Or am I just > emotional, would not be the first for me re: over re-acting. What > kinds of things should we expect. > > Thank you in advance for any help you can give. > > Patti > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 Patti, I was diagnosed with infiltrating ductal carcinoma in May 1990 and I am doing fine. You could call the American Cancer Society and they will send out lots of info. Komen Foundation may have some also. In the meantime go to www.webmd.com and type it in there. Also there is a good book call Choices by n Morra dn Eve Potts. If you go to www.half.com and type that in it should pull up the latest edition. Its the 3rd one I believe. I want to get it when I get a chance. It has ALL cancers but also explains everything in detail and has questions to ask the dr etc. I have the first two editions but they are becoming outdated with all the new treatments etc. May 6th does seem like a long time. Is there anyway you could get them to push the date up? If your aunt is stressed out I would call and let them know. Its the not knowing and waiting that is extremely hard. She is very lucky to have you. I will keep you both in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com introduction > Hi my name is Patti. Yesterday my aunt found out that she has > infiltrating duct carcinoma. I don't know that much about breast > cancer, so I was wondering if someone could please send me some > information on it. One thing that I am curious about is, she found > out yesterday and they can't get her into see a surgeon until May > 6th. Doesn't that seem like a long time to wait? Or am I just > emotional, would not be the first for me re: over re-acting. What > kinds of things should we expect. > > Thank you in advance for any help you can give. > > Patti > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 nne, sorry for the delayed response. Thank you for your info. I have spoken with my aunt and she went to the surgeon and sat and waited on an on-call basis. Good news, the tumor is only 1.2 centimeters big. So they are planning a lumpectomy and short treatment of radiation or chemo. Not sure when all of this is going to start, but thank you very much for your information. I will be forwarding all of this on to my aunt, and looking it up my self. My mother works in a hospital and they gave her two movies for us to watch and pass on to my aunt. 1. Between Us - A first Ai Kit for Your Heart & Soul 2. Beyond Flowers, What to Say and Do When Someone You Know Has Breast cancer. So I will be sitting down and watching a couple of movies tonight and getting them in the mail tomorrow. Again, thank you for your response. I am sure that I will have more questions as time goes on. Patti -- introduction> Hi my name is Patti. Yesterday my aunt found out that she has> infiltrating duct carcinoma. I don't know that much about breast> cancer, so I was wondering if someone could please send me some> information on it. One thing that I am curious about is, she found> out yesterday and they can't get her into see a surgeon until May> 6th. Doesn't that seem like a long time to wait? Or am I just> emotional, would not be the first for me re: over re-acting. What> kinds of things should we expect.>> Thank you in advance for any help you can give.>> Patti>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 nne, sorry for the delayed response. Thank you for your info. I have spoken with my aunt and she went to the surgeon and sat and waited on an on-call basis. Good news, the tumor is only 1.2 centimeters big. So they are planning a lumpectomy and short treatment of radiation or chemo. Not sure when all of this is going to start, but thank you very much for your information. I will be forwarding all of this on to my aunt, and looking it up my self. My mother works in a hospital and they gave her two movies for us to watch and pass on to my aunt. 1. Between Us - A first Ai Kit for Your Heart & Soul 2. Beyond Flowers, What to Say and Do When Someone You Know Has Breast cancer. So I will be sitting down and watching a couple of movies tonight and getting them in the mail tomorrow. Again, thank you for your response. I am sure that I will have more questions as time goes on. Patti -- introduction> Hi my name is Patti. Yesterday my aunt found out that she has> infiltrating duct carcinoma. I don't know that much about breast> cancer, so I was wondering if someone could please send me some> information on it. One thing that I am curious about is, she found> out yesterday and they can't get her into see a surgeon until May> 6th. Doesn't that seem like a long time to wait? Or am I just> emotional, would not be the first for me re: over re-acting. What> kinds of things should we expect.>> Thank you in advance for any help you can give.>> Patti>>>>>>> Quote Link to comment Share on other sites More sharing options...
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