Our Families Journey Caring for a Mom with FTLD-MND
It is important to know as you read this journal that this was Cathy's life post diagnosis...
To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.
Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)
Tuesday, February 5, 2013
4 years today
We Love You Mom
We Miss You Grandma
Wishing Heaven had visiting hours today...
5 comments:
Anonymous
said...
Hello_ I am a scientist doing stem cell research using cells from people who have donated their brains to science. I recently received a new round of samples and one of the diseases was FTLD. I came across this blog while researching the disease and read it from beginning to end. It really helps to put a human side to the research that we do. I just wanted to tell you that this blog helped do just that and you and your family's story was absolutely incredible, heart-wrenching, and beautiful. Please know that there are people out there working hard to find the reasons these diseases happen and hopefully one day there will be a treatment/cure. Until then know that you are the best DIL a MIL could have ever asked for, and Im sure that Cathy knew that, even in the end. God Bless You and your whole family.
Please hurry so my children will not have to endure any of this terrible disease. My husband is nearing the end of his journey and it has been hell on earth.
Hi my name is Laura and my mom passed away in April from FTD. She was formerly diagnosed in June 2010. At that time all I could find to help me learn about this horrible disease was your blog... And I wanted to thank you from the bottom of my heart that you posted all this! It was my bible. I can't tell you how many times over the last 3 years I would read your blogs. My mom was a carbon copy of Cathy in almost every way. I learned and prepared myself more from you than her own doctors... I would tell everyone in my family how "mom is now doing what Cathy did". Your descriptions and detail of the changes were so spot on to everything my mom did. This disease is the cruelest disease I have ever seen!! My dad and I were here caretakers until it got to be so difficult that we had to hire outside people to come in. My dad was so devoted to her that would not let her go to a nursing home and literally had a heart attack moving her to the commode. It was devastating!! Needless to say it has been an incredibly sad and difficult few years. But your blogs helped me so much!!! I don't know how I would have managed without it! You are a special person and Cathy was so very lucky to have you! I would love to be able to correspond with you sometime if possible. I have so many unanswered questions still.... But thank you again!!!
Hi my name is Laura and my mom passed away in April from FTD. She was formerly diagnosed in June 2010. At that time all I could find to help me learn about this horrible disease was your blog... And I wanted to thank you from the bottom of my heart that you posted all this! It was my bible. I can't tell you how many times over the last 3 years I would read your blogs. My mom was a carbon copy of Cathy in almost every way. I learned and prepared myself more from you than her own doctors... I would tell everyone in my family how "mom is now doing what Cathy did". Your descriptions and detail of the changes were so spot on to everything my mom did. This disease is the cruelest disease I have ever seen!! My dad and I were here caretakers until it got to be so difficult that we had to hire outside people to come in. My dad was so devoted to her that would not let her go to a nursing home and literally had a heart attack moving her to the commode. It was devastating!! Needless to say it has been an incredibly sad and difficult few years. But your blogs helped me so much!!! I don't know how I would have managed without it! You are a special person and Cathy was so very lucky to have you! I would love to be able to correspond with you sometime if possible. I have so many unanswered questions still.... But thank you again!!!
I just found your blog last night and have enjoyed reading it so much. I sent you an email at your hotmail account, thanking you for sharing your journey. God bless you and your family.
5 comments:
Hello_ I am a scientist doing stem cell research using cells from people who have donated their brains to science. I recently received a new round of samples and one of the diseases was FTLD. I came across this blog while researching the disease and read it from beginning to end. It really helps to put a human side to the research that we do. I just wanted to tell you that this blog helped do just that and you and your family's story was absolutely incredible, heart-wrenching, and beautiful. Please know that there are people out there working hard to find the reasons these diseases happen and hopefully one day there will be a treatment/cure. Until then know that you are the best DIL a MIL could have ever asked for, and Im sure that Cathy knew that, even in the end. God Bless You and your whole family.
Please hurry so my children will not have to endure any of this terrible disease. My husband is nearing the end of his journey and it has been hell on earth.
Hi my name is Laura and my mom passed away in April from FTD. She was formerly diagnosed in June 2010. At that time all I could find to help me learn about this horrible disease was your blog... And I wanted to thank you from the bottom of my heart that you posted all this! It was my bible. I can't tell you how many times over the last 3 years I would read your blogs. My mom was a carbon copy of Cathy in almost every way. I learned and prepared myself more from you than her own doctors... I would tell everyone in my family how "mom is now doing what Cathy did". Your descriptions and detail of the changes were so spot on to everything my mom did. This disease is the cruelest disease I have ever seen!! My dad and I were here caretakers until it got to be so difficult that we had to hire outside people to come in. My dad was so devoted to her that would not let her go to a nursing home and literally had a heart attack moving her to the commode. It was devastating!! Needless to say it has been an incredibly sad and difficult few years. But your blogs helped me so much!!! I don't know how I would have managed without it! You are a special person and Cathy was so very lucky to have you! I would love to be able to correspond with you sometime if possible. I have so many unanswered questions still.... But thank you again!!!
Hi my name is Laura and my mom passed away in April from FTD. She was formerly diagnosed in June 2010. At that time all I could find to help me learn about this horrible disease was your blog... And I wanted to thank you from the bottom of my heart that you posted all this! It was my bible. I can't tell you how many times over the last 3 years I would read your blogs. My mom was a carbon copy of Cathy in almost every way. I learned and prepared myself more from you than her own doctors... I would tell everyone in my family how "mom is now doing what Cathy did". Your descriptions and detail of the changes were so spot on to everything my mom did. This disease is the cruelest disease I have ever seen!! My dad and I were here caretakers until it got to be so difficult that we had to hire outside people to come in. My dad was so devoted to her that would not let her go to a nursing home and literally had a heart attack moving her to the commode. It was devastating!! Needless to say it has been an incredibly sad and difficult few years. But your blogs helped me so much!!! I don't know how I would have managed without it! You are a special person and Cathy was so very lucky to have you! I would love to be able to correspond with you sometime if possible. I have so many unanswered questions still.... But thank you again!!!
I just found your blog last night and have enjoyed reading it so much. I sent you an email at your hotmail account, thanking you for sharing your journey. God bless you and your family.
Jen Silverman
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