Interesting paper on case histories of those who get bad genetic news.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095442/
Case histories
Re: Case histories
Wow, compelling. My life will certainly never be the same. I think all 4/4s feel this way. There is this lost innocence (for lack of a better word) that I used to have before the "knowing." Most days I'm grateful for the knowledge and feel hopeful, but there are certainly days I'd love to go back to the "pre-knowing."
I totally get "Josh's" frustration. We are given very grim news with lots of conflicting information from the medical community.
I totally get "Josh's" frustration. We are given very grim news with lots of conflicting information from the medical community.
Re: Case histories
Hi Doc Lost -
100% wish I did not know. The news is always resting somewhere in my mind, ready to attack the good times.
The only positive is that my family treats me with tremendous love and kindness. I continually strive to be a good role model for them, because it is not all about me.
Thanks, Doc.
100% wish I did not know. The news is always resting somewhere in my mind, ready to attack the good times.
The only positive is that my family treats me with tremendous love and kindness. I continually strive to be a good role model for them, because it is not all about me.
Thanks, Doc.
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Gilgamesh
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Re: Case histories
I respect the "wish I didn't know" position. Myself, knowing I'm an ε4-carrier has changed my life. But I'm extremely glad I know.
This is also why I want to get a beta-amyloid scan, and do the olfactory test, and so on: I want to know. The more I know, the more I can fine-tune my choices about my health, and so much else connected to that (where I live, etc.).
But knowing has been hard, to be sure. I think about the faulty ApoE protein my brain is swimming in far too often. But once I feel more solid about my health choices, I'm assuming the concern will start fading. I certainly hope so.
GB
This is also why I want to get a beta-amyloid scan, and do the olfactory test, and so on: I want to know. The more I know, the more I can fine-tune my choices about my health, and so much else connected to that (where I live, etc.).
But knowing has been hard, to be sure. I think about the faulty ApoE protein my brain is swimming in far too often. But once I feel more solid about my health choices, I'm assuming the concern will start fading. I certainly hope so.
GB
Re: Case histories
Interesting to see the opposing responses.
Something to think about - there are still many other diseases besides AD that have no cure that people have to face every day.
My dearest friend was diagnosed with rare thymic cancer, which has only a 5% survival rate past 5 years. 5%! None beyond 10. Should he not have been told? There really was no cure. Of course, he was told, and did what he could to extend his life for 4 years past diagnosis. He spent those 4 years piling in as much as he could with his sons, wife and friends. He was 49 when he died, and did not live to see his oldest son graduate from high school.
We're all dealt hands that we don't necessarily want to deal with. The Buddha says we suffer because we get too attached to we want (long lives, good health?), or try to resist things we don't want (AD, other problems?). I hold my friend as an example of moving beyond that attachment and cultivating a certain spiritual detachment so he could focus on the higher, and really more important goals and purposes in his remaining life...being a great dad, husband and friend. It does not mean he didn't fight it - he did his research and went through many treatments. He just realized that he didn't know the outcome, so he decided to control what he could - his attitude and how he lived his life.
We have been given a gift of sorts - the clarity that we are not immortal. Now, that's not exactly a surprise, but most people just mostly choose to ignore it. So with our particular clarity, we can choose to live the lives we want NOW, and not get to those proverbial last thoughts of, geez I wish I had lived my life differently.
Something to think about - there are still many other diseases besides AD that have no cure that people have to face every day.
My dearest friend was diagnosed with rare thymic cancer, which has only a 5% survival rate past 5 years. 5%! None beyond 10. Should he not have been told? There really was no cure. Of course, he was told, and did what he could to extend his life for 4 years past diagnosis. He spent those 4 years piling in as much as he could with his sons, wife and friends. He was 49 when he died, and did not live to see his oldest son graduate from high school.
We're all dealt hands that we don't necessarily want to deal with. The Buddha says we suffer because we get too attached to we want (long lives, good health?), or try to resist things we don't want (AD, other problems?). I hold my friend as an example of moving beyond that attachment and cultivating a certain spiritual detachment so he could focus on the higher, and really more important goals and purposes in his remaining life...being a great dad, husband and friend. It does not mean he didn't fight it - he did his research and went through many treatments. He just realized that he didn't know the outcome, so he decided to control what he could - his attitude and how he lived his life.
We have been given a gift of sorts - the clarity that we are not immortal. Now, that's not exactly a surprise, but most people just mostly choose to ignore it. So with our particular clarity, we can choose to live the lives we want NOW, and not get to those proverbial last thoughts of, geez I wish I had lived my life differently.
Re: Case histories
Susan - You really hit the nail on the head here.
You know how Ive managed to get through all this? Was really accepting the outcome if that's what it comes down to. It was the only way for me. Do I have many bad moments where Im like, "if only I was a 3/3"....of course!
But thats why Im not prepared to do many of the things suggested that may or may not increase our lifespan by some mere years that I can probably count on one hand. Enjoy what you have now and use this as an opportunity that many others dont realize or want to face.....that none of us (2's, 3's or 4's) get out of this alive.
I've certainly come to appreciate so many things that I would have taken for granted before. And if theres one thing that I can hope for, is to never lose that appreciation for the NOW!
You know how Ive managed to get through all this? Was really accepting the outcome if that's what it comes down to. It was the only way for me. Do I have many bad moments where Im like, "if only I was a 3/3"....of course!
But thats why Im not prepared to do many of the things suggested that may or may not increase our lifespan by some mere years that I can probably count on one hand. Enjoy what you have now and use this as an opportunity that many others dont realize or want to face.....that none of us (2's, 3's or 4's) get out of this alive.
I've certainly come to appreciate so many things that I would have taken for granted before. And if theres one thing that I can hope for, is to never lose that appreciation for the NOW!
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Starfish77
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Re: Case histories
In reading the "case histories" I found a number of points in others replies that resonate with me.
Like @gilgamesh I am very glad I had the opportunity to learn my APOE status (e4/e4) through 23andme. I didn't think
knowing had an adverse effect on me. I asked my significant other if he noticed any difference in me. He thinks
I'm appearing a little more focused in not putting things off into the future as much. I can research things forever
and not make a decision. I'm really making an effort to improve on this.
Like @SusanJ I see the tendency we all have to believe we will be here forever. A reminder of our mortality
is a good inspiration to make the best of each day. I loved the story of her friend, who when diagnosed with a
terminal illness made the very best of his remaining days and didn't waste any feeling sorry for himself.
Like @Skibike, i'm willing to do some things to stay healthy or get healthier but I'm not going to do it to the extent
that i'm not enjoying my day to day life. I admire those who have the ability to stick to very spartan regimes, but
I'm not one of them.
I agree with @Gilgamesh in respecting people who do not want to know their status. We all come from different
experiences and react differently to things. One of my favorite things about this forum is the respect people have
for people with views that are different from theirs. Being in a group of people who are all dealing with their
APOE status gives us a sense of perspective. We see that we are not the center of the universe and can enjoy
each other's successes and give support when it is needed. I get so much out of reading the forum every day.
Like @gilgamesh I am very glad I had the opportunity to learn my APOE status (e4/e4) through 23andme. I didn't think
knowing had an adverse effect on me. I asked my significant other if he noticed any difference in me. He thinks
I'm appearing a little more focused in not putting things off into the future as much. I can research things forever
and not make a decision. I'm really making an effort to improve on this.
Like @SusanJ I see the tendency we all have to believe we will be here forever. A reminder of our mortality
is a good inspiration to make the best of each day. I loved the story of her friend, who when diagnosed with a
terminal illness made the very best of his remaining days and didn't waste any feeling sorry for himself.
Like @Skibike, i'm willing to do some things to stay healthy or get healthier but I'm not going to do it to the extent
that i'm not enjoying my day to day life. I admire those who have the ability to stick to very spartan regimes, but
I'm not one of them.
I agree with @Gilgamesh in respecting people who do not want to know their status. We all come from different
experiences and react differently to things. One of my favorite things about this forum is the respect people have
for people with views that are different from theirs. Being in a group of people who are all dealing with their
APOE status gives us a sense of perspective. We see that we are not the center of the universe and can enjoy
each other's successes and give support when it is needed. I get so much out of reading the forum every day.
Re: Case histories
Because of my 4/4 self, I have more empathy, compassion. I am not so quick to judge others.
I play on a bridge team. My partner and I were recently playing in a match, and our opponents were struggling. One woman was probably a great player in her earlier years, but she was having so much trouble remembering her cards, the bidding. Her partner was rude to her - she kept rolling her eyes and getting irritated. Like - I am stuck playing with this idiot? That is how she acted.
The only thing I cared about that day was that this woman who was having memory issues would not get upset, that she would feel valued. I just wanted to ease her embarrassment, her suffering. Six months ago I might have thought ... easy win. I have grown up. Winning really isn't everything.
Still, that doesn't mean I like knowing that I am 4/4. I am just trying to contribute another positive.
I play on a bridge team. My partner and I were recently playing in a match, and our opponents were struggling. One woman was probably a great player in her earlier years, but she was having so much trouble remembering her cards, the bidding. Her partner was rude to her - she kept rolling her eyes and getting irritated. Like - I am stuck playing with this idiot? That is how she acted.
The only thing I cared about that day was that this woman who was having memory issues would not get upset, that she would feel valued. I just wanted to ease her embarrassment, her suffering. Six months ago I might have thought ... easy win. I have grown up. Winning really isn't everything.
Still, that doesn't mean I like knowing that I am 4/4. I am just trying to contribute another positive.
