Would You Want to Know? - Georgetown,TX

This is such a tough question and not one that I think I could answer honestly unless faced with it. There are merits to both sides. A classmate's mother did take the brave step of being diagnosed and as a result, is participating in a groundbreaking study. I think that the altruist in me would probably go for the diagnosis so that if it were something I carried, I could participate in studies that might lead to better understanding of the disease and how to halt or reverse its progress. I think I would get some satisfaction and relief, at least early on, by knowing that I was able to do something proactive and useful about this while asymptomatic. But that's me, and it's not a reality for me. I can certainly see the "ignorance is bliss" side of this too.

If you're interested, here is an article about my classmates mom:

http://www.prevention.com/health/alzheimers-disease-and-d...

Sitting around worrying is a waste of energy and time.

If there is a test available? Get 'er done! If you are going to sit around and worry about it? Spend the $$$$$ to get the test done so you can LIVE YOUR LIFE instead of wasting time worrying about it.

I would make sure that I have ALL of my affairs in order...
* living will
* funds for Alzheimer care
* life insurance - everything spelled out NOW while of "sound mind"

Stop wasting your life worrying. Seriously. I just can't see worrying about something I have NO CONTROL over. If I had the gene? Would I want to know - most likely. But either way?!?! I would NOT waste my life worrying about something I cannot change. I would spend it LIVING not worrying.

Participate in studies. GREAT IDEA!!
Worrying about it? WASTE of time.

Since there are drugs available that, in some patients, slow down the symptoms (though there is no cure) -- yes, I would want to know if it were possible I might get it, or if my husband were genetically likely to get it.

Knowing the risk could make you both more alert to the early-onset signs and therefore likelier to get him whatever treatments are available all the sooner.

If he is the type of person who would just say, "I don't want any interventions" and who would not want to try the available drugs, or who would not want to be part of a clinical trial that might (or might not) help him -- if he can say that for certain right now, then maybe he doesn't need to know the genetic testing outcome.

You wonder, would we worry all the time about when it was going to happen? If I were in your boat I would already be worrying about that even without his having done the test. Is HE the type to worry about it even without the test? If so, then would knowing for sure via the test mean he was more worried or less worried and more resigned? I'd rather know, myself, so I could be ready to leap onto whatever was out there when the signs began.

I do wish him and you well -- and I hope that whatever he decides to do about testing, you and he continue to live to the fullest, as we all should. Maybe he could talk to a genetic counselor -- there are such people, and they should be able to discuss the ins and outs of "knowing" with him before he decides yes or no on the test. A testing facility should have genetic counselors who have heard these worries before.

I heard a few minutes on this subject on the radio yesterday. They were talking about some $5000 test, so I don't know if this is the same one you're talking about. I remember the doctor they were interviewing say he didn't recommend the test because there's no treatment to stop it. I think I would agree if that's true. I wouldn't want to know if I was going to have a good chance of getting it, knowing I wouldn't be able to do anything to stop it or slow it down.

As far as I know if you get tested the results can and should be confidential and not open to others.

I would want to know simply so I could plan my finances. However, given the circumstances, I honestly think the decision of whether or not to know is your husband's. But, I, as a wife, would be planning my finances in case of his needing long term care and my days around enjoying every moment with him that I and my children had.

My best to you and your family.

I think rather then getting the test I would first get my things in order. Sorry if you have already done this.

But I would first talk to an elder are attorney to see what all the options recommendations are. From there I would get my finances in order and share my wishes for my existence should I not be able to decide.

I would take note of specific things for my family members (children).

I would probably get in contact with an association to find out what important things should be done, and even see if there is a support group for spouses that can maybe educate you.

My parents have always had health problems, specifically my father. So I have always lived my life with the expectation that I too will have them. So I have taken charge of what I can now to lessen the burden for the future.

I think I would be exploring more of these avenues first. A lot of things can happen before dementia sets in.

I wish I had more positive things to say.

I did want to know, and my mom, a two-time cancer survivor, was tested for genetic mutations that could be passed to us. We also have a long family history of cancers that fit a certain profile. If she had any of the genetic mutations, then we would be tested ourselves. Luckily, she didn't test positive for the known mutations, but more discoveries are made all the time.
One of the reasons she wanted to do the test was for my children. If there is a mutation that can be passed down through the generations, then they are at risk, their children are at risk, etc. Early cancer screenings would be needed and justified.
I think it would be worthwhile to speak to a genetic counselor to learn more about the types of genetic mutations it could be, and then make an informed decision on the test. I was glad she had it done, but I am the type of person that wants to know what I could be dealing with, instead of letting things lie in wait.

If it was a disorder that I could do something to prevent, then yes, I would want to know.
If it was a disorder that was going to happen or not happen, regardless of any action I took, I would just let the chips fall where they may.

Having gone through this with one of my inlaws, I will tell you that I would not have the test. You and your husband, with the family connection, need to plan accordingly. Sit down and put EVERYTHING to paper - all your accounts and account numbers so that nothing is forgotten. Write directions for everything in regards to anything that you would need to know that he wouldn't be able to tell you.

Do you have long-term care insurance? You should really consider that.

Once you have all your ducks in a row, then relax and live a little, Jane. Enjoy each other.

For this, no. I would not want to know. I would spend my time worrying about when and how. If I forgot my keys or something else, am I just forgetfull/stressed etc or is "it" starting? For a bleeding disorder, I was tested as a carrier when we started infertility treatments/discussions etc. There is a big difference. Once has a treatment and plan, the other does not.

We should always live life to the fullest since we never know what can happen at any time. Unfortunately, sometimes that is easier said than done.

I agree with Doris - plan like he will have it but live like he doesn't. So don't worry and fret - just live and love.

Best of luck!!

My first cousin has breast cancer and she had the genetic testing done. She wanted to know for her daughters and for me and my daughters.

Turned out she did not have the breast cancer genes and they classified hers as environmental.

I am glad that she was tested. I am not sure if she had tested positive if I would have gotten myself tested. But it would make me even more diligent about screenings (although I am already diligent).

My husband and I just try and live healthy lives and enjoy every moment we have...we could all go any day.

This advice wasn't very helpful...no probably would not get tested...live life everyday to the fullest.

Here's the thing to think about with any kind of genetic testing. What difference will knowing make?

With many diseases/conditions there are things you can do to help decrease your risks of developing the disease or minimizing complications from a condition. Unfortunately with Alzheimers that's not the case at this point in time, treatment/prevention is extremely limited at this point.

I agree with Doris. Get all your ducks in a row for the possibility he'll end up with it. Then live every day.

My DH and I both have various things in our family history that are concerning - prostate cancer, dementia of various kinds, cancer (lots of cancer). I would ask, what would you change if you knew it might be? I'd rather live life than worry about a timebomb...that may not go off. I don't have medical history for my paternal side at all so I really have no idea what I might face. DH's family recently lost a cousin, who had previously had the same cancer as her twin - and genetic testing said it was just an anomaly that they both had the same cancer. It was not genetic. So you might still get something worrying, with no warning.

I've chosen not to get tested for anything at this point in my life. I've seen too many curve balls to know that even with a test, you really don't know what direction your health will take.

DH and I have discussed what if...What if we get cancer. What if we get Alzheimer's. What if we need nursing care. And we have living wills and life insurance and hope for the best. Given your DH's family history, you should long term disability insurance and that's it.

Also, consider that these tests may exclude him from reasonable life insurance rates,so if he does get the test, get good insurance first.

Maybe it's because I've worked in the medical industry forever and have seen the huge progress that has been made...heck yea, I'll get every test I can!

There are things you can plan and anticipate. I have participated in clinical trials and I think it worked out great. I wouldn't want to wonder/worry...give me answers. What about the posters here that ask "what do you think is wrong, I've had a headache for three years".

Your husband is only 38...testing and treatment will only improve.