Genetic Testing & Progressive Illness & My family & Me
December 13, 2012 6:10 PM Subscribe
I can get tested to find out if I will die of a progressive neurological illness. Oh good, that is not tricky at all.
My grandfather has Huntington's Disease and will likely die of complications from it in the next couple years. The disease is an autosomal dominant disorder, so my mother is at risk. This year I've noticed symptoms in my mother for the first time (very subtle, but unmistakable if you've seen the disease), which is of course a bummer after 54+ years of reassuring each other that we were lucky so far.
This is a real mindfuck in terms of finding the right people to talk to, since talking about it with my family is so fucking heavy. We are an overly talk it out share all your feelings work through it type family, and have been through rough stuff together in the past, but this is insane. I would like to get my head wrappped around the issue as much as possible while there is still time to plausibly deny my mother's symptoms, which is a game we all seem to be playing while we figure out what to do.
I have wanted to get tested for a few years, and have the means to do so independently at this point. I would only do so if I felt I could allow my mother and my sister to remain blissfully ignorant of this decision. My mother has specifically stated that she does not want to get tested unless it is necessary for medical care or if my sister or I are making decisions about having children, and both of these scenarios are still very much in potential/hypothetical/years away territory for all of us. I have started the process of getting linked up with medical professionals and therapists and all that.
My questions:
1. Your family has problem genes. Do you have ground rules for talking about it? Best practices? Things to avoid?
2. You have decided to get tested to find out if you will die from a specific thing in the future: how did you prepare? Make peace with both possible results? Why did you pick getting tested over not knowing? How did knowing change your decisions?
3a. You are an insurance wizard. Tell me things about what I can do to help my parents establish the best set of circumstances for my mother since she has not yet been diagnosed.
3b. You are still an insurance wizard. Tell me things I should think about for myself, especially with regards to getting tested.
Stats just for reference:
- My parents are financially pretty a-ok, and there is a hope my mother could work until retirement (...maaaybe. fuck.)
- The extended family cannot handle talking about this, so they are not available to offer insight
- I'm 100% sure I am seeing symptoms. They are distinctive.
- I'm not religious, am single, am currently healthy, have plenty of savings, late twenties
Previously, not quite applicable.
[followup: HDmefi@gmail.com]
My grandfather has Huntington's Disease and will likely die of complications from it in the next couple years. The disease is an autosomal dominant disorder, so my mother is at risk. This year I've noticed symptoms in my mother for the first time (very subtle, but unmistakable if you've seen the disease), which is of course a bummer after 54+ years of reassuring each other that we were lucky so far.
This is a real mindfuck in terms of finding the right people to talk to, since talking about it with my family is so fucking heavy. We are an overly talk it out share all your feelings work through it type family, and have been through rough stuff together in the past, but this is insane. I would like to get my head wrappped around the issue as much as possible while there is still time to plausibly deny my mother's symptoms, which is a game we all seem to be playing while we figure out what to do.
I have wanted to get tested for a few years, and have the means to do so independently at this point. I would only do so if I felt I could allow my mother and my sister to remain blissfully ignorant of this decision. My mother has specifically stated that she does not want to get tested unless it is necessary for medical care or if my sister or I are making decisions about having children, and both of these scenarios are still very much in potential/hypothetical/years away territory for all of us. I have started the process of getting linked up with medical professionals and therapists and all that.
My questions:
1. Your family has problem genes. Do you have ground rules for talking about it? Best practices? Things to avoid?
2. You have decided to get tested to find out if you will die from a specific thing in the future: how did you prepare? Make peace with both possible results? Why did you pick getting tested over not knowing? How did knowing change your decisions?
3a. You are an insurance wizard. Tell me things about what I can do to help my parents establish the best set of circumstances for my mother since she has not yet been diagnosed.
3b. You are still an insurance wizard. Tell me things I should think about for myself, especially with regards to getting tested.
Stats just for reference:
- My parents are financially pretty a-ok, and there is a hope my mother could work until retirement (...maaaybe. fuck.)
- The extended family cannot handle talking about this, so they are not available to offer insight
- I'm 100% sure I am seeing symptoms. They are distinctive.
- I'm not religious, am single, am currently healthy, have plenty of savings, late twenties
Previously, not quite applicable.
[followup: HDmefi@gmail.com]
I have an heriditary nasty disease that has killed a few family members, and the ones it hasn't killed, the treatment has killed in the meantime.
My family has had genetic testing, but with that comes comprehensive genetic counselling. That is what you need to get, most importantly. In Australia, pretty much all genetic testing comes with the counselling. Not sure where you are, but ask your gp. Don't consider testing without the counselling, it's a very bad idea.
Absolutely happy to offer support and thoughts via meta-email if you're interested.
Massive hugs, possum. Seriously massive hugs.
posted by taff at 6:44 PM on December 13, 2012 [3 favorites]
My family has had genetic testing, but with that comes comprehensive genetic counselling. That is what you need to get, most importantly. In Australia, pretty much all genetic testing comes with the counselling. Not sure where you are, but ask your gp. Don't consider testing without the counselling, it's a very bad idea.
Absolutely happy to offer support and thoughts via meta-email if you're interested.
Massive hugs, possum. Seriously massive hugs.
posted by taff at 6:44 PM on December 13, 2012 [3 favorites]
I'd recommend meeting with a genetic counselor. They are trained to talk through exactly these issues and can help walk you through the pros and cons of deciding to pursue testing. The National Society of Genetic Counselors can point you toward someone in your area. I wish all the best for you and your family.
posted by goggie at 6:46 PM on December 13, 2012 [3 favorites]
posted by goggie at 6:46 PM on December 13, 2012 [3 favorites]
That "previously" was my question. If you read deeper into the comments, you'll see our situations are very close after all; my mother did get tested and does have Huntington's, as I'd come to fear. I had the presymptomatic test two years ago and luckily the results were negative; I don't have the gene. I'll go through your questions point by point, but if there's anything else you want to talk about, please MeMail me or write me at gerryblog@gmail.com.
I know very well how lonely this is and I really wish you weren't going through this.
1. Your family has problem genes. Do you have ground rules for talking about it? Best practices? Things to avoid?
There's a lot to say about this, but the major thing to think about is the way families divide between those who are at risk and those who aren't. I have found since I got the gene test that overnight people were no longer able to talk about HD with me in the same way. This includes my brother, who previously had been open about this and his fears about his own future.
Be ready for irrationality. People take their fears about their own genetics in unexpected directions. Be patient. Don't push too hard too fast.
2. You have decided to get tested to find out if you will die from a specific thing in the future: how did you prepare? Make peace with both possible results? Why did you pick getting tested over not knowing? How did knowing change your decisions?
I chose to get tested when I did because my wife and I were planning to get pregnant and I wanted to be sure the baby would be healthy. It is now possible to use IVF with PGD to insure that a baby will not inherit the gene, but it is extremely expensive, and quite difficult for the mother; I decided I couldn't go down that road unless it as absolutely necessary.
On a deeper level, I felt I had to know. After decades of uncertainty, I couldn't stand not knowing any more, or preparing for a happy and an unhappy future simultaneously. I felt like I was losing my mind. I was also manifesting phantom symptoms that went away immediately upon receiving my negative result; prior to that moment I had been more or less certain I was a carrier (as is also common).
Studies of people who have gone through presymptomatic testing reveal that they are generally all happier two years after the test, regardless of the results. There is a peace that coms with knowing. That said, it was extremely difficult, almost unbearably so. When my wife took me to the clinic to get the results I was in tears from the second we got in the car. It is not to be undertaken lightly, and please be sure you have the necessary support.
I'm glad I got tested, and I think I would feel the same way if my results had gone the other way. But it's so intensely personal; I can't possibly advise you whether or not to do it.
I'd be happier to answer more specific questions off the thread.
3a. You are an insurance wizard. Tell me things about what I can do to help my parents establish the best set of circumstances for my mother since she has not yet been diagnosed.
There's not much they can do at this point, honestly. She is getting symptoms late, which suggests her number is low, which means the symptoms will (probably) be lighter and the decline will (probably) not be as steep. But she may not be able to work for much longer; my mom became unemployable over the course of her 50s, and is now on disability at 61. She needs to make sure she has health insurance. Both your parents need to start thinking, now, about how much money can be made available for her care.
3b. You are still an insurance wizard. Tell me things I should think about for myself, especially with regards to getting tested.
You need to be fully insured with very long terms, both life insurance and long-term care/disability, before you consider taking the test. If your results are positive, you will not be able to get this kind of insurance after the fact.
Best of luck deciding what is right for you. Please know that whether or not you carry the gene you are worthy of love and happiness. And do some research into the current cutting-edge treatments; there are some very promising new lines that may be able to freeze the progression of the disease and thereby save future generations of people from suffering.
posted by gerryblog at 6:48 PM on December 13, 2012 [30 favorites]
I know very well how lonely this is and I really wish you weren't going through this.
1. Your family has problem genes. Do you have ground rules for talking about it? Best practices? Things to avoid?
There's a lot to say about this, but the major thing to think about is the way families divide between those who are at risk and those who aren't. I have found since I got the gene test that overnight people were no longer able to talk about HD with me in the same way. This includes my brother, who previously had been open about this and his fears about his own future.
Be ready for irrationality. People take their fears about their own genetics in unexpected directions. Be patient. Don't push too hard too fast.
2. You have decided to get tested to find out if you will die from a specific thing in the future: how did you prepare? Make peace with both possible results? Why did you pick getting tested over not knowing? How did knowing change your decisions?
I chose to get tested when I did because my wife and I were planning to get pregnant and I wanted to be sure the baby would be healthy. It is now possible to use IVF with PGD to insure that a baby will not inherit the gene, but it is extremely expensive, and quite difficult for the mother; I decided I couldn't go down that road unless it as absolutely necessary.
On a deeper level, I felt I had to know. After decades of uncertainty, I couldn't stand not knowing any more, or preparing for a happy and an unhappy future simultaneously. I felt like I was losing my mind. I was also manifesting phantom symptoms that went away immediately upon receiving my negative result; prior to that moment I had been more or less certain I was a carrier (as is also common).
Studies of people who have gone through presymptomatic testing reveal that they are generally all happier two years after the test, regardless of the results. There is a peace that coms with knowing. That said, it was extremely difficult, almost unbearably so. When my wife took me to the clinic to get the results I was in tears from the second we got in the car. It is not to be undertaken lightly, and please be sure you have the necessary support.
I'm glad I got tested, and I think I would feel the same way if my results had gone the other way. But it's so intensely personal; I can't possibly advise you whether or not to do it.
I'd be happier to answer more specific questions off the thread.
3a. You are an insurance wizard. Tell me things about what I can do to help my parents establish the best set of circumstances for my mother since she has not yet been diagnosed.
There's not much they can do at this point, honestly. She is getting symptoms late, which suggests her number is low, which means the symptoms will (probably) be lighter and the decline will (probably) not be as steep. But she may not be able to work for much longer; my mom became unemployable over the course of her 50s, and is now on disability at 61. She needs to make sure she has health insurance. Both your parents need to start thinking, now, about how much money can be made available for her care.
3b. You are still an insurance wizard. Tell me things I should think about for myself, especially with regards to getting tested.
You need to be fully insured with very long terms, both life insurance and long-term care/disability, before you consider taking the test. If your results are positive, you will not be able to get this kind of insurance after the fact.
Best of luck deciding what is right for you. Please know that whether or not you carry the gene you are worthy of love and happiness. And do some research into the current cutting-edge treatments; there are some very promising new lines that may be able to freeze the progression of the disease and thereby save future generations of people from suffering.
posted by gerryblog at 6:48 PM on December 13, 2012 [30 favorites]
1. Your family has problem genes. Do you have ground rules for talking about it? Best practices? Things to avoid?
My biological family members die overwhelmingly of stroke and/or heart attack. I'm working on the assumption that I'm going to go out that way as well. However, my mother-in-law-has Friedreich's ataxia, which is an autosomal recessive disorder. My husband does not have it, but he's a carrier. Children are unlikely for us for unrelated reasons, but we have discussed it and if we were going to try, I would first determine if I was a carrier, and if I was, we would not have biological children. My MIL is aware of this decision, and she supports it.
posted by crankylex at 6:49 PM on December 13, 2012
My biological family members die overwhelmingly of stroke and/or heart attack. I'm working on the assumption that I'm going to go out that way as well. However, my mother-in-law-has Friedreich's ataxia, which is an autosomal recessive disorder. My husband does not have it, but he's a carrier. Children are unlikely for us for unrelated reasons, but we have discussed it and if we were going to try, I would first determine if I was a carrier, and if I was, we would not have biological children. My MIL is aware of this decision, and she supports it.
posted by crankylex at 6:49 PM on December 13, 2012
I would get tested in hopes I could be part of a clinical trial, funded by a university or drug company.
This is not good advice for the specific case of Huntington's Disease at the present time; there are no clinical trials to speak of in the present that would be of benefit for a presymptomatic individual in their late twenties. I would call a chapter of the Huntington's Disease Society of America and ask if you can come in to speak with one of their social workers; ours was a living saint, a life-saver. They will help you figure out what getting tested may mean for you.
They will not allow anyone to get the test without rigorous genetic and psychological counseling, so this is more for the benefit of the room than for you personally. They make sure you understand the stakes before you go forward.
posted by gerryblog at 6:50 PM on December 13, 2012 [5 favorites]
This is not good advice for the specific case of Huntington's Disease at the present time; there are no clinical trials to speak of in the present that would be of benefit for a presymptomatic individual in their late twenties. I would call a chapter of the Huntington's Disease Society of America and ask if you can come in to speak with one of their social workers; ours was a living saint, a life-saver. They will help you figure out what getting tested may mean for you.
They will not allow anyone to get the test without rigorous genetic and psychological counseling, so this is more for the benefit of the room than for you personally. They make sure you understand the stakes before you go forward.
posted by gerryblog at 6:50 PM on December 13, 2012 [5 favorites]
My cousin died of Huntington's many years ago. He got it from his father, who married into my family, so I was not at risk. I would like to say that I'm very sorry for the pain that your family is going through, and hope that it will not continue to another generation. My aunt lived in Dallas when my cousin was sick, and I lived in Houston and was young. I think he was 45 or so, while I was 12 or so. I have no idea if my perspective is useful, but I hope so.
(1) I remember my parents talking about his condition freely with us, and I remember him speaking about it (perhaps prompted by my parents?). My brother and I were aware of the state of affairs and the gravity of the situation. I remember my cousin talking to my parents about it in a casual setting, but not understanding most of the details. My aunt spoke to my brother and I directly about it as well. I think overall my family treated it as a reality so that no one would be surprised at the eventual situation.
(2) My uncle died of Huntington's, which is how they found out that my cousin was at risk, and in turn found out he had it. He and my aunt had many years to prepare, such that when things started getting really bad they had a system in place long beforehand to deal with it. They knew what would happen and had planned ahead financially. There were no surprises, and his last months were as comfortable as possible in an assisted living home. I believe it is better to know longer, because you and your family can plan ahead longer.
I was too young to know about insurance stuff. PM me if any of this was helpful and you would like me to say something more. Again, I'm so sorry you're going through this.
posted by bessel functions seem unnecessarily complicated at 7:06 PM on December 13, 2012
(1) I remember my parents talking about his condition freely with us, and I remember him speaking about it (perhaps prompted by my parents?). My brother and I were aware of the state of affairs and the gravity of the situation. I remember my cousin talking to my parents about it in a casual setting, but not understanding most of the details. My aunt spoke to my brother and I directly about it as well. I think overall my family treated it as a reality so that no one would be surprised at the eventual situation.
(2) My uncle died of Huntington's, which is how they found out that my cousin was at risk, and in turn found out he had it. He and my aunt had many years to prepare, such that when things started getting really bad they had a system in place long beforehand to deal with it. They knew what would happen and had planned ahead financially. There were no surprises, and his last months were as comfortable as possible in an assisted living home. I believe it is better to know longer, because you and your family can plan ahead longer.
I was too young to know about insurance stuff. PM me if any of this was helpful and you would like me to say something more. Again, I'm so sorry you're going through this.
posted by bessel functions seem unnecessarily complicated at 7:06 PM on December 13, 2012
1. Your family has problem genes. Do you have ground rules for talking about it? Best practices? Things to avoid?
It's kind of a pick-and-choose sort of thing in my family. The problem genes (autosomal domininant kidney disease) are on my dad's side, and he's pretty stoic, even though his dad died of it at 34 and his grandmother died at 37. He spanned 16 years between diagnosis and dialysis and he didn't tell his own mother until he could hide it no longer -- she saw the needle marks and bruises on his arms from the treatments and burst into shocked tears, but he saved her 16 years of useless worry. He never regretted it.
My brother and I both have it. We talk pretty openly about it and it's been a comfort. I wouldn't wish this on anyone, but I feel like we're soldier buddies in the trenches of an uncertain war. Average life expectancy nowadays is 56, but we both have hopes for longer. We avoid talking about it in direct terms with Mom. She's a rock, but she's hopelessly positive, and that somehow makes me feel worse instead of better. You kind of have to weigh things carefully. But I treasure my time with my dad, even moved across the country to be closer, and I feel blessed he is still with us.
You don't mention if you have kids or a family of your own or if you are single. My brother has family, and he's sort of pacing out the information as our parents did. I'm dating occasionally, and after a few disastrous confessions I have learned that it's something I just can't tell people. And yet I do find myself surreptitiously sizing people up, squinting at them in the light and wondering if this particular person could handle my becoming sick in 10-20 years. Without exception, the answer in my heart is always no, not this one. It's a bit lonely.
There are likely support groups for you, but YMMV. I attended a charity event for my kidney disease and I left with mixed feelings -- I had this smug feeling of feeling I was more prepared or grounded than the others.
Insurance: I am a fanatic about full coverage, and I am still in a place where I can get life insurance through work. But my brother is holding off on having his young children tested so as not to burden them with the expense. There's no cure, and the only real expense is simple meds, so they wait for now.
One tip: I have found that my outlook became easier after I stopped saying I will die from this disease. It just made it feel so ominous. It's a big, crazy world -- I could slip on the trail and slide down a mountainside, I could get rammed by an errant stretch limo and die in an instant. It's a little morbid, sure, but removing the phrase I WILL DIE FROM THIS from your personal lexicon takes away a lot of its power.
Big hugs. And memail me if you want.
posted by mochapickle at 7:30 PM on December 13, 2012 [8 favorites]
It's kind of a pick-and-choose sort of thing in my family. The problem genes (autosomal domininant kidney disease) are on my dad's side, and he's pretty stoic, even though his dad died of it at 34 and his grandmother died at 37. He spanned 16 years between diagnosis and dialysis and he didn't tell his own mother until he could hide it no longer -- she saw the needle marks and bruises on his arms from the treatments and burst into shocked tears, but he saved her 16 years of useless worry. He never regretted it.
My brother and I both have it. We talk pretty openly about it and it's been a comfort. I wouldn't wish this on anyone, but I feel like we're soldier buddies in the trenches of an uncertain war. Average life expectancy nowadays is 56, but we both have hopes for longer. We avoid talking about it in direct terms with Mom. She's a rock, but she's hopelessly positive, and that somehow makes me feel worse instead of better. You kind of have to weigh things carefully. But I treasure my time with my dad, even moved across the country to be closer, and I feel blessed he is still with us.
You don't mention if you have kids or a family of your own or if you are single. My brother has family, and he's sort of pacing out the information as our parents did. I'm dating occasionally, and after a few disastrous confessions I have learned that it's something I just can't tell people. And yet I do find myself surreptitiously sizing people up, squinting at them in the light and wondering if this particular person could handle my becoming sick in 10-20 years. Without exception, the answer in my heart is always no, not this one. It's a bit lonely.
There are likely support groups for you, but YMMV. I attended a charity event for my kidney disease and I left with mixed feelings -- I had this smug feeling of feeling I was more prepared or grounded than the others.
Insurance: I am a fanatic about full coverage, and I am still in a place where I can get life insurance through work. But my brother is holding off on having his young children tested so as not to burden them with the expense. There's no cure, and the only real expense is simple meds, so they wait for now.
One tip: I have found that my outlook became easier after I stopped saying I will die from this disease. It just made it feel so ominous. It's a big, crazy world -- I could slip on the trail and slide down a mountainside, I could get rammed by an errant stretch limo and die in an instant. It's a little morbid, sure, but removing the phrase I WILL DIE FROM THIS from your personal lexicon takes away a lot of its power.
Big hugs. And memail me if you want.
posted by mochapickle at 7:30 PM on December 13, 2012 [8 favorites]
Ah, you do mention that you are single with no kids. I missed that part.
posted by mochapickle at 7:52 PM on December 13, 2012
posted by mochapickle at 7:52 PM on December 13, 2012
I would only do so if I felt I could allow my mother and my sister to remain blissfully ignorant of this decision.
To be honest, I don't know if this is possible. On one hand, you may find out that you are home free, and thus could live your life without a certain kind of worry. But your experience may come into play when you consider your sister's life, and thus you may be more likely to encourage (or discourage) her than you may have been if you remained untested.
On the other hand, if you're tested and find that you're affected, how could you possibly keep quiet about it without it affecting the way you act around your family?
Integration -- the lack of cognitive dissonance between the varied parts of your life -- is critical to keeping anyone on an even keel. When part of your life already involves the devastating influence of a disease like this, keeping silent about any aspect of it will probably add more stress to an already stressful situation.
I am not and have never been in your shoes, so my advice doesn't come from experience. You need to do what is best for your particular situation, and you have my deep support for any path you take towards dealing with this -- tested, disclosed, neither, whatever.
But you deserve to have the fullest complement of support and care possible, which most likely includes being up front with the people who know best what you're going through: the rest of your family.
Best of luck and care. Please update if you can.
posted by Madamina at 8:57 PM on December 13, 2012
To be honest, I don't know if this is possible. On one hand, you may find out that you are home free, and thus could live your life without a certain kind of worry. But your experience may come into play when you consider your sister's life, and thus you may be more likely to encourage (or discourage) her than you may have been if you remained untested.
On the other hand, if you're tested and find that you're affected, how could you possibly keep quiet about it without it affecting the way you act around your family?
Integration -- the lack of cognitive dissonance between the varied parts of your life -- is critical to keeping anyone on an even keel. When part of your life already involves the devastating influence of a disease like this, keeping silent about any aspect of it will probably add more stress to an already stressful situation.
I am not and have never been in your shoes, so my advice doesn't come from experience. You need to do what is best for your particular situation, and you have my deep support for any path you take towards dealing with this -- tested, disclosed, neither, whatever.
But you deserve to have the fullest complement of support and care possible, which most likely includes being up front with the people who know best what you're going through: the rest of your family.
Best of luck and care. Please update if you can.
posted by Madamina at 8:57 PM on December 13, 2012
Sent you a mail to the throwaway.
RE: insurance...
If she HAS NOT been diagnosed now, your father needs to purchase long-term care on his policy, for there will be astronomical nursing home costs.
This may be something that you might want to do prior to testing (although if you follow my recommendation to your throwaway, you may not have to do this quite yet).
posted by kuanes at 3:55 AM on December 14, 2012 [2 favorites]
RE: insurance...
If she HAS NOT been diagnosed now, your father needs to purchase long-term care on his policy, for there will be astronomical nursing home costs.
This may be something that you might want to do prior to testing (although if you follow my recommendation to your throwaway, you may not have to do this quite yet).
posted by kuanes at 3:55 AM on December 14, 2012 [2 favorites]
My sisters partner is likely to have Huntingtons as his mother has it (and long history on her side). I don't know how to respond to your questions but just wanted to share one thing with you.
He could be tested now but has decided not to. He has a few years yet before the doctors claim that any symptoms will begin. His decision is to simply enjoy life for now without carrying the weight of knowing what could happen.
Wish you luck.
posted by Under the Sea at 4:53 AM on December 14, 2012
He could be tested now but has decided not to. He has a few years yet before the doctors claim that any symptoms will begin. His decision is to simply enjoy life for now without carrying the weight of knowing what could happen.
Wish you luck.
posted by Under the Sea at 4:53 AM on December 14, 2012
3b. You are still an insurance wizard. Tell me things I should think about for myself, especially with regards to getting tested.
I'm not really an insurance wizard, but I feel like the main reason to get tested (other than puncturing the uncertainty balloon) would be to plan around a positive result -- that is, to inform any possible life partners, or to really sock away some savings/long-term care insurance to cover your decades of intensive health needs, be sure that your family will have the resources to get by when you can't hold up your end, etc. Not to live under a cloud of gloom to but to plan from a realistic point of view where retirement savings aren't for visiting the Greek Isles but are for covering your nursing home costs, where you need to do your "retirement" travel with your family in your 40s instead of later, etc.
Good luck with the decision, and with your mom's needs.
posted by acm at 7:07 AM on December 14, 2012
I'm not really an insurance wizard, but I feel like the main reason to get tested (other than puncturing the uncertainty balloon) would be to plan around a positive result -- that is, to inform any possible life partners, or to really sock away some savings/long-term care insurance to cover your decades of intensive health needs, be sure that your family will have the resources to get by when you can't hold up your end, etc. Not to live under a cloud of gloom to but to plan from a realistic point of view where retirement savings aren't for visiting the Greek Isles but are for covering your nursing home costs, where you need to do your "retirement" travel with your family in your 40s instead of later, etc.
Good luck with the decision, and with your mom's needs.
posted by acm at 7:07 AM on December 14, 2012
Here's a story from the NYTimes about a woman who chose to get tested and was positive.
posted by ShooBoo at 7:57 AM on December 14, 2012 [1 favorite]
posted by ShooBoo at 7:57 AM on December 14, 2012 [1 favorite]
I had posted in the 'previously' thread, and I sent you an email.
But like gerryblog, I decided to get tested, I also tested negative, and as gerryblog said in the previously link, it was life-changing to get out from under 20 years of worrying. The more I think about it, the more I think that I would feel relieved just to know, even if it had come up positive.
posted by MeiraV at 1:38 PM on December 15, 2012 [1 favorite]
But like gerryblog, I decided to get tested, I also tested negative, and as gerryblog said in the previously link, it was life-changing to get out from under 20 years of worrying. The more I think about it, the more I think that I would feel relieved just to know, even if it had come up positive.
posted by MeiraV at 1:38 PM on December 15, 2012 [1 favorite]
My niece's family has had her grandfather and father both having Huntingtons. She decided to totally deny that she might have it. She won't discuss it, and she married and had 2 children. I think it's horrible and insensitive since she probably will get it and has already shared it. When she was 21 we offered to pay for testing and she wouldn't...BUT I think you should be tested. My life opinion is find out now, then you can deal with it either way. Don't live in fear, don't live in doubt. Be the person in your family to be strong and get it checked out. Bon chance!!
posted by msleann at 11:53 PM on December 15, 2012
posted by msleann at 11:53 PM on December 15, 2012
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posted by roomthreeseventeen at 6:39 PM on December 13, 2012 [2 favorites]