Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! Simone -- This e-mail may contain confidential and/or privileged information. If you are not the intended recipient (or have received this e-mail in error) please notify the sender immediately and destroy this e-mail. Any unauthorized copying, disclosure or distribution of the material in this e-mail is strictly forbidden. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! Simone -- This e-mail may contain confidential and/or privileged information. If you are not the intended recipient (or have received this e-mail in error) please notify the sender immediately and destroy this e-mail. Any unauthorized copying, disclosure or distribution of the material in this e-mail is strictly forbidden. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Dear Simone: You write a very poignant message. Being a caretaker is a very difficult job, and it is terrible to see what is occurring with a loved one. Each day, it seems to me, there is something new, which I have found out through the group, is not unique for my husband. It would be easier to know what to anticipate, but that isn't always possible. Just when I am ready to " throw in the towel, " because things are so difficult, there is a respite of a few days of better health. Why, I wouldn't know. Now if we can just hang on to that thought--that things change from time to time; and either we have become used to coping with the symptoms, or the health is really better, even just temporarily. This group is a wonderful forum for information and encouragement. Do the best you can--no one can do more, and remember that you, like us all, have failings. Lou R.At 02:50 PM 6/3/2002 -0400, you wrote: >I don't quite know how to work this system yet. I spoke with Don Summers >who suggested that I sign up for the mail group. I just have not yet >figured out how to get into the loop and actually begin to talk with people. > >My father was diagnosed 3 years ago. His situation has been >progressively worsening - actually the degeneration is increasing >exponentially. And quite honestly he does not want to live...and I cannot >blame him. He is very very sad and feeling alone. I connected him to Don >once and he was grateful for the contact...he had thought that he was the >only one in the world afflicted with this illness. I am anticipating >increasing suffering on his part and wish that I knew more about the >progression of the illness in the abstract rather than >experientially. Although it is important to care about how he feels and >how others feel, as his caregiver I actually do not have the bandwidth to >care much about his feelings. I am trying desperately to build >infrastructure around his life so that he can be as independent as >possible. I am the one holding it all together - the sheer logistics of >daily life consume me....and then of course there is the whole emotional >component. > >What I really need is to have a catalogue (built around a time scale) of >how different people have displayed symptoms. Are there differences >between men and women, between races, between ages of onset.....so many >variables to take into account. What are the symptoms that are >universal....which have been uniquely experienced. Does such a composite >list exist? Have I just not learned to navigate this mechanism.....if it >does not exist, does anyone see merit in a consolidation of this type of >information....a high level database of sorts.....I can help design it >conceptually of folks like the idea..... > >This is all so very difficult....and when I get weary taking care of dad, >doing my job and missing having any life at all, I remind myself that my >complaints are inconsequential compared to his suffering. God I love him >so much....I wish I could just fix it!!! > >Simone > > >-- > >This e-mail may contain confidential and/or privileged information. If you >are not the intended recipient (or have received this e-mail in error) >please notify the sender immediately and destroy this e-mail. Any >unauthorized copying, disclosure or distribution of the material in this >e-mail is strictly forbidden. > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Dear Simone: You write a very poignant message. Being a caretaker is a very difficult job, and it is terrible to see what is occurring with a loved one. Each day, it seems to me, there is something new, which I have found out through the group, is not unique for my husband. It would be easier to know what to anticipate, but that isn't always possible. Just when I am ready to " throw in the towel, " because things are so difficult, there is a respite of a few days of better health. Why, I wouldn't know. Now if we can just hang on to that thought--that things change from time to time; and either we have become used to coping with the symptoms, or the health is really better, even just temporarily. This group is a wonderful forum for information and encouragement. Do the best you can--no one can do more, and remember that you, like us all, have failings. Lou R.At 02:50 PM 6/3/2002 -0400, you wrote: >I don't quite know how to work this system yet. I spoke with Don Summers >who suggested that I sign up for the mail group. I just have not yet >figured out how to get into the loop and actually begin to talk with people. > >My father was diagnosed 3 years ago. His situation has been >progressively worsening - actually the degeneration is increasing >exponentially. And quite honestly he does not want to live...and I cannot >blame him. He is very very sad and feeling alone. I connected him to Don >once and he was grateful for the contact...he had thought that he was the >only one in the world afflicted with this illness. I am anticipating >increasing suffering on his part and wish that I knew more about the >progression of the illness in the abstract rather than >experientially. Although it is important to care about how he feels and >how others feel, as his caregiver I actually do not have the bandwidth to >care much about his feelings. I am trying desperately to build >infrastructure around his life so that he can be as independent as >possible. I am the one holding it all together - the sheer logistics of >daily life consume me....and then of course there is the whole emotional >component. > >What I really need is to have a catalogue (built around a time scale) of >how different people have displayed symptoms. Are there differences >between men and women, between races, between ages of onset.....so many >variables to take into account. What are the symptoms that are >universal....which have been uniquely experienced. Does such a composite >list exist? Have I just not learned to navigate this mechanism.....if it >does not exist, does anyone see merit in a consolidation of this type of >information....a high level database of sorts.....I can help design it >conceptually of folks like the idea..... > >This is all so very difficult....and when I get weary taking care of dad, >doing my job and missing having any life at all, I remind myself that my >complaints are inconsequential compared to his suffering. God I love him >so much....I wish I could just fix it!!! > >Simone > > >-- > >This e-mail may contain confidential and/or privileged information. If you >are not the intended recipient (or have received this e-mail in error) >please notify the sender immediately and destroy this e-mail. Any >unauthorized copying, disclosure or distribution of the material in this >e-mail is strictly forbidden. > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Simone: I sent off a quick e-mail, and I just reread it. When I said that you, like the rest of us, have failings, I meant really that we are all human and cannot do everything perfectly. My previous words didn't reflect my true feelings--sorry. Lou ReynoldsAt 02:50 PM 6/3/2002 -0400, you wrote: >I don't quite know how to work this system yet. I spoke with Don Summers >who suggested that I sign up for the mail group. I just have not yet >figured out how to get into the loop and actually begin to talk with people. > >My father was diagnosed 3 years ago. His situation has been >progressively worsening - actually the degeneration is increasing >exponentially. And quite honestly he does not want to live...and I cannot >blame him. He is very very sad and feeling alone. I connected him to Don >once and he was grateful for the contact...he had thought that he was the >only one in the world afflicted with this illness. I am anticipating >increasing suffering on his part and wish that I knew more about the >progression of the illness in the abstract rather than >experientially. Although it is important to care about how he feels and >how others feel, as his caregiver I actually do not have the bandwidth to >care much about his feelings. I am trying desperately to build >infrastructure around his life so that he can be as independent as >possible. I am the one holding it all together - the sheer logistics of >daily life consume me....and then of course there is the whole emotional >component. > >What I really need is to have a catalogue (built around a time scale) of >how different people have displayed symptoms. Are there differences >between men and women, between races, between ages of onset.....so many >variables to take into account. What are the symptoms that are >universal....which have been uniquely experienced. Does such a composite >list exist? Have I just not learned to navigate this mechanism.....if it >does not exist, does anyone see merit in a consolidation of this type of >information....a high level database of sorts.....I can help design it >conceptually of folks like the idea..... > >This is all so very difficult....and when I get weary taking care of dad, >doing my job and missing having any life at all, I remind myself that my >complaints are inconsequential compared to his suffering. God I love him >so much....I wish I could just fix it!!! > >Simone > > >-- > >This e-mail may contain confidential and/or privileged information. If you >are not the intended recipient (or have received this e-mail in error) >please notify the sender immediately and destroy this e-mail. Any >unauthorized copying, disclosure or distribution of the material in this >e-mail is strictly forbidden. > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Simone: I sent off a quick e-mail, and I just reread it. When I said that you, like the rest of us, have failings, I meant really that we are all human and cannot do everything perfectly. My previous words didn't reflect my true feelings--sorry. Lou ReynoldsAt 02:50 PM 6/3/2002 -0400, you wrote: >I don't quite know how to work this system yet. I spoke with Don Summers >who suggested that I sign up for the mail group. I just have not yet >figured out how to get into the loop and actually begin to talk with people. > >My father was diagnosed 3 years ago. His situation has been >progressively worsening - actually the degeneration is increasing >exponentially. And quite honestly he does not want to live...and I cannot >blame him. He is very very sad and feeling alone. I connected him to Don >once and he was grateful for the contact...he had thought that he was the >only one in the world afflicted with this illness. I am anticipating >increasing suffering on his part and wish that I knew more about the >progression of the illness in the abstract rather than >experientially. Although it is important to care about how he feels and >how others feel, as his caregiver I actually do not have the bandwidth to >care much about his feelings. I am trying desperately to build >infrastructure around his life so that he can be as independent as >possible. I am the one holding it all together - the sheer logistics of >daily life consume me....and then of course there is the whole emotional >component. > >What I really need is to have a catalogue (built around a time scale) of >how different people have displayed symptoms. Are there differences >between men and women, between races, between ages of onset.....so many >variables to take into account. What are the symptoms that are >universal....which have been uniquely experienced. Does such a composite >list exist? Have I just not learned to navigate this mechanism.....if it >does not exist, does anyone see merit in a consolidation of this type of >information....a high level database of sorts.....I can help design it >conceptually of folks like the idea..... > >This is all so very difficult....and when I get weary taking care of dad, >doing my job and missing having any life at all, I remind myself that my >complaints are inconsequential compared to his suffering. God I love him >so much....I wish I could just fix it!!! > >Simone > > >-- > >This e-mail may contain confidential and/or privileged information. If you >are not the intended recipient (or have received this e-mail in error) >please notify the sender immediately and destroy this e-mail. Any >unauthorized copying, disclosure or distribution of the material in this >e-mail is strictly forbidden. > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Simone, I am sorry to hear that you have a need for this group. Reading your message it sounds like you are a graduate of computer science. I wish this disease responded like a computer but it doesn't. There are symptoms that everyone has and there are symptoms that only a few have. You can't unfortunately break this disease down into a pie chart or make a database from the symptoms. It is good that you are building an infrastructure to make his life as independant as it can be. This is also very important to him. We all need to feel that we can do something for ourselves as long as possible. It is unfortunate that you cannot fix this disease because no one can. This disease is terminal. You cannot put in data and have it come out to tell you how to fix it short term or long term. You can only be there for your father, and help him with the symptoms whatever they may be at the time. There are people on here who are very knowledgable with MSA and can help you. There are not any doctors in this group. If you are given a suggestion please ask your doctor first before doing anything that is suggested here. It may or may not be what is wrong with your father. Your father needs all the love and support that I know you are giving him. God bless, Belinda > > I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. > > My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. > > What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... > > This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! > > Simone > > > -- > > This e-mail may contain confidential and/or privileged information. If you are not the intended recipient (or have received this e-mail in error) please notify the sender immediately and destroy this e- mail. Any unauthorized copying, disclosure or distribution of the material in this e-mail is strictly forbidden. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Simone, I am sorry to hear that you have a need for this group. Reading your message it sounds like you are a graduate of computer science. I wish this disease responded like a computer but it doesn't. There are symptoms that everyone has and there are symptoms that only a few have. You can't unfortunately break this disease down into a pie chart or make a database from the symptoms. It is good that you are building an infrastructure to make his life as independant as it can be. This is also very important to him. We all need to feel that we can do something for ourselves as long as possible. It is unfortunate that you cannot fix this disease because no one can. This disease is terminal. You cannot put in data and have it come out to tell you how to fix it short term or long term. You can only be there for your father, and help him with the symptoms whatever they may be at the time. There are people on here who are very knowledgable with MSA and can help you. There are not any doctors in this group. If you are given a suggestion please ask your doctor first before doing anything that is suggested here. It may or may not be what is wrong with your father. Your father needs all the love and support that I know you are giving him. God bless, Belinda > > I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. > > My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. > > What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... > > This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! > > Simone > > > -- > > This e-mail may contain confidential and/or privileged information. If you are not the intended recipient (or have received this e-mail in error) please notify the sender immediately and destroy this e- mail. Any unauthorized copying, disclosure or distribution of the material in this e-mail is strictly forbidden. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Simone: I support completely Belinda's comments in " Message 1 " below. I am an engineer that has spent my professional career " solving problems. " After all, you get the data, define the problem, and find the solution. Right? WRONG for MSA! When Terry was Dxed with MSA, I said here is another problem to solve. Well, MSA is a mess that can only be managed; it is not a problem that can be solved. Believe me, it has taken a long time to get this through my engineering head. But the people on this list have helped in ways that you can not imagine. Learn as much as you can and pass it along to your loved ones. [You may even have to educate your doctors.] Welcome to Symptom Management 101. Sorry you have to be here; but together, we can manage the mess. Message: 1 Date: Tue, 04 Jun 2002 01:50:48 -0000 Subject: Re: Digest Number 1527 Simone, I am sorry to hear that you have a need for this group. Reading your message it sounds like you are a graduate of computer science. I wish this disease responded like a computer but it doesn't. There are symptoms that everyone has and there are symptoms that only a few have. You can't unfortunately break this disease down into a pie chart or make a database from the symptoms. It is good that you are building an infrastructure to make his life as independant as it can be. This is also very important to him. We all need to feel that we can do something for ourselves as long as possible. It is unfortunate that you cannot fix this disease because no one can. This disease is terminal. You cannot put in data and have it come out to tell you how to fix it short term or long term. You can only be there for your father, and help him with the symptoms whatever they may be at the time. There are people on here who are very knowledgable with MSA and can help you. There are not any doctors in this group. If you are given a suggestion please ask your doctor first before doing anything that is suggested here. It may or may not be what is wrong with your father. Your father needs all the love and support that I know you are giving him. God bless, Belinda Date: Mon, 3 Jun 2002 14:50:13 -0400 Subject: Re: Digest Number 1527 I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! Simone Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Simone: I support completely Belinda's comments in " Message 1 " below. I am an engineer that has spent my professional career " solving problems. " After all, you get the data, define the problem, and find the solution. Right? WRONG for MSA! When Terry was Dxed with MSA, I said here is another problem to solve. Well, MSA is a mess that can only be managed; it is not a problem that can be solved. Believe me, it has taken a long time to get this through my engineering head. But the people on this list have helped in ways that you can not imagine. Learn as much as you can and pass it along to your loved ones. [You may even have to educate your doctors.] Welcome to Symptom Management 101. Sorry you have to be here; but together, we can manage the mess. Message: 1 Date: Tue, 04 Jun 2002 01:50:48 -0000 Subject: Re: Digest Number 1527 Simone, I am sorry to hear that you have a need for this group. Reading your message it sounds like you are a graduate of computer science. I wish this disease responded like a computer but it doesn't. There are symptoms that everyone has and there are symptoms that only a few have. You can't unfortunately break this disease down into a pie chart or make a database from the symptoms. It is good that you are building an infrastructure to make his life as independant as it can be. This is also very important to him. We all need to feel that we can do something for ourselves as long as possible. It is unfortunate that you cannot fix this disease because no one can. This disease is terminal. You cannot put in data and have it come out to tell you how to fix it short term or long term. You can only be there for your father, and help him with the symptoms whatever they may be at the time. There are people on here who are very knowledgable with MSA and can help you. There are not any doctors in this group. If you are given a suggestion please ask your doctor first before doing anything that is suggested here. It may or may not be what is wrong with your father. Your father needs all the love and support that I know you are giving him. God bless, Belinda Date: Mon, 3 Jun 2002 14:50:13 -0400 Subject: Re: Digest Number 1527 I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! Simone Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Simone: I support completely Belinda's comments in " Message 1 " below. I am an engineer that has spent my professional career " solving problems. " After all, you get the data, define the problem, and find the solution. Right? WRONG for MSA! When Terry was Dxed with MSA, I said here is another problem to solve. Well, MSA is a mess that can only be managed; it is not a problem that can be solved. Believe me, it has taken a long time to get this through my engineering head. But the people on this list have helped in ways that you can not imagine. Learn as much as you can and pass it along to your loved ones. [You may even have to educate your doctors.] Welcome to Symptom Management 101. Sorry you have to be here; but together, we can manage the mess. Message: 1 Date: Tue, 04 Jun 2002 01:50:48 -0000 Subject: Re: Digest Number 1527 Simone, I am sorry to hear that you have a need for this group. Reading your message it sounds like you are a graduate of computer science. I wish this disease responded like a computer but it doesn't. There are symptoms that everyone has and there are symptoms that only a few have. You can't unfortunately break this disease down into a pie chart or make a database from the symptoms. It is good that you are building an infrastructure to make his life as independant as it can be. This is also very important to him. We all need to feel that we can do something for ourselves as long as possible. It is unfortunate that you cannot fix this disease because no one can. This disease is terminal. You cannot put in data and have it come out to tell you how to fix it short term or long term. You can only be there for your father, and help him with the symptoms whatever they may be at the time. There are people on here who are very knowledgable with MSA and can help you. There are not any doctors in this group. If you are given a suggestion please ask your doctor first before doing anything that is suggested here. It may or may not be what is wrong with your father. Your father needs all the love and support that I know you are giving him. God bless, Belinda Date: Mon, 3 Jun 2002 14:50:13 -0400 Subject: Re: Digest Number 1527 I don't quite know how to work this system yet. I spoke with Don Summers who suggested that I sign up for the mail group. I just have not yet figured out how to get into the loop and actually begin to talk with people. My father was diagnosed 3 years ago. His situation has been progressively worsening - actually the degeneration is increasing exponentially. And quite honestly he does not want to live...and I cannot blame him. He is very very sad and feeling alone. I connected him to Don once and he was grateful for the contact...he had thought that he was the only one in the world afflicted with this illness. I am anticipating increasing suffering on his part and wish that I knew more about the progression of the illness in the abstract rather than experientially. Although it is important to care about how he feels and how others feel, as his caregiver I actually do not have the bandwidth to care much about his feelings. I am trying desperately to build infrastructure around his life so that he can be as independent as possible. I am the one holding it all together - the sheer logistics of daily life consume me....and then of course there is the whole emotional component. What I really need is to have a catalogue (built around a time scale) of how different people have displayed symptoms. Are there differences between men and women, between races, between ages of onset.....so many variables to take into account. What are the symptoms that are universal....which have been uniquely experienced. Does such a composite list exist? Have I just not learned to navigate this mechanism.....if it does not exist, does anyone see merit in a consolidation of this type of information....a high level database of sorts.....I can help design it conceptually of folks like the idea..... This is all so very difficult....and when I get weary taking care of dad, doing my job and missing having any life at all, I remind myself that my complaints are inconsequential compared to his suffering. God I love him so much....I wish I could just fix it!!! Simone Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Simone & , Boy, you two have hit the nail right on the head as far as I'm concerned. I'm a problem solver too, and I've always had a " okay, brin it on! " attitude about difficult situations. This one is different though, because as says it can only be managed (with luck and skill) not fixed, and because it's not an abstract business problem but a life problem that affects someone I love very much. It's taken me nearly 4 years to learn that, but it's very true. Carol & Rob Lexington, MA > Simone: > > I support completely Belinda's comments in " Message 1 " below. I am an > engineer that has spent my professional career " solving problems. " After > all, you get the data, define the problem, and find the solution. Right? > WRONG for MSA! > > When Terry was Dxed with MSA, I said here is another problem to > solve. Well, MSA is a mess that can only be managed; it is not a problem > that can be solved. > > Believe me, it has taken a long time to get this through my engineering > head. But the people on this list have helped in ways that you can not > imagine. Learn as much as you can and pass it along to your loved ones. > [You may even have to educate your doctors.] Welcome to Symptom Management 101. > > Sorry you have to be here; but together, we can manage the mess. > > > Message: 1 > Date: Tue, 04 Jun 2002 01:50:48 -0000 > From: " belnorest " > Subject: Re: Digest Number 1527 > > > Simone, > I am sorry to hear that you have a need for this group. Reading your > message it sounds like you are a graduate of computer science. I wish > this disease responded like a computer but it doesn't. There are > symptoms that everyone has and there are symptoms that only a few > have. You can't unfortunately break this disease down into a pie > chart or make a database from the symptoms. It is good that you are > building an infrastructure to make his life as independant as it can > be. This is also very important to him. We all need to feel that we > can do something for ourselves as long as possible. It is unfortunate > that you cannot fix this disease because no one can. This disease is > terminal. You cannot put in data and have it come out to tell you how > to fix it short term or long term. You can only be there for your > father, and help him with the symptoms whatever they may be at the > time. There are people on here who are very knowledgable with MSA and > can help you. There are not any doctors in this group. If you are > given a suggestion please ask your doctor first before doing anything > that is suggested here. It may or may not be what is wrong with your > father. Your father needs all the love and support that I know you > are giving him. > God bless, > Belinda > > > > Date: Mon, 3 Jun 2002 14:50:13 -0400 > From: " Simone Seth " > Subject: Re: Digest Number 1527 > > > > I don't quite know how to work this system yet. I spoke with Don Summers > who suggested that I sign up for the mail group. I just have not yet > figured out how to get into the loop and actually begin to talk with people. > > > My father was diagnosed 3 years ago. His situation has been > progressively worsening - actually the degeneration is increasing > exponentially. And quite honestly he does not want to live...and I cannot > blame him. He is very very sad and feeling alone. I connected him to Don > once and he was grateful for the contact...he had thought that he was the > only one in the world afflicted with this illness. I am anticipating > increasing suffering on his part and wish that I knew more about the > progression of the illness in the abstract rather than experientially. > Although it is important to care about how he feels and how others feel, as > his caregiver I actually do not have the bandwidth to care much about his > feelings. I am trying desperately to build infrastructure around his life > so that he can be as independent as possible. I am the one holding it all > together - the sheer logistics of daily life consume me....and then of > course there is the whole emotional component. > > > What I really need is to have a catalogue (built around a time scale) of > how different people have displayed symptoms. Are there differences between > men and women, between races, between ages of onset.....so many variables > to take into account. What are the symptoms that are universal....which > have been uniquely experienced. Does such a composite list exist? Have I > just not learned to navigate this mechanism.....if it does not exist, does > anyone see merit in a consolidation of this type of information....a high > level database of sorts.....I can help design it conceptually of folks like > the idea..... > > > This is all so very difficult....and when I get weary taking care of dad, > doing my job and missing having any life at all, I remind myself that my > complaints are inconsequential compared to his suffering. God I love him so > much....I wish I could just fix it!!! > > > Simone > > > > Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 I started going gray in my early 20's and last year (age 44) I was diagnosed with hypo thyroid. Maybe there is a connection! Hankes Open RNY 10/06/04 SSF 347/223 I read somewhere that early gray is symptomatic of thyroid desease and guess what? I was diagnosed with hypo thyroid almost 20 years ago. I am 51 years old and I have to admit the early gray didn't bother be when I was 'too young to be gray " but now it really does! Yes, I have earned every one of the gray hairs, too. __________________________________ Discover Yahoo! Have fun online with music videos, cool games, IM and more. Check it out! http://discover.yahoo.com/online.html Quote Link to comment Share on other sites More sharing options...
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