Hello All. I'm not sure how to start this except one of my son's called today and asked about testing. He and his wife are wanting to take the parenthood plunge since they aren't getting any younger. Both of my children have to this point chosen not to test and I don't blame them. They decided not knowing until there was reason was the approach for them.

I have mentioned some things to him in the past to be aware of and most importantly was the need (I hope) to test before conception. Today I briefly mentioned the need for LTD and Life insurance. I also mentioned ?"private testing"?. Does it have to be disclosed?

He has some medical training but CAG's and HD aren't part of it. He didn't quite understand how the medical profession can be so sure of who will or may never exhibit symptoms. Most of you probably know my CAG is 36 and I am the first in the family.

Another question is how would the military view a positive (pray it isn't) test result.

Can the group help me here. All of you have so much more knowledge and experience than I. It would help to have your inputs. I am sending him links and they will check replies as it is probably better than me trying to explain over the phone.

I know there have been a lot of past post but he doesn't get much time off so I'm trying to jump start his information search.

Thanks so much,

Mike



Edited 1 time(s). Last edit at 02/13/2013 05:50PM by mikee.

If he's in the Military then I'd say go do the test. If he is positive for HD and tested while in the service he will qualify for 100% disability. If he waits until he's discharged then he'll have to prove its service connected...very hard to do.
If we could go back and do things over we would in a minute.
My phd had early symptoms while in the service on Sub duty. Falls, lack of concentration, memory loss. He decided to not re-enlist instead of looking for a medical problem. Now we're in a 5+ year battle with the VA to get him benefits.

Any disability 80% or over and VA pays for a nursing home later and he would never have to worry about health insurance. This is huge. Plus he will get disability pay from the VA. That income is tax free and in addition to any Social Security or offset by other income. He wouldn't have to worry about LTC insurance.

I realize he doesn't have symptoms and IF he tests positive I have no idea how the military will view that. But, if they did give him a medical discharge he will have the disability payments every month and still be allowed to work as a civilian.
Getting the military to do the test without symptoms may be an issue. He might have to find a reason other then just wanting to start a family.

I realize that's probably not what he wants to hear but given what my phd and I have gone through I wouldn't hesitate. My phd had to go into a nursing home at age 45. I'm now a hostage to Medicaid. The nursing home is 6k a month, on medicaid its 4500/month. I still have to pay more then half of that bill each month. Its been a huge burden and made our lives a living hell. If I get any additional income, Medicaid takes it to pay the nursing home. All of this could have been avoided if my phd had just tested while in the service. Plus we would have had the additional income from VA to fall back on.

Good luck to both of you and I pray he won't need the VA disability!

mikee-

So im at risk, and not ready to test.

I did get Long Term Care and Life Insurance put in place in case i change my mind. I also upped the disability plan I have at work and made sure its portable (I can take it with me once I leave my current employer). The process on those took about 60 days, and I think its worth it to know that if I do test positive, my husband wont go completely broke.

Also, some people do IVF with PGD where they dont find out their results. We are also doing that, but for us the decision was easy, since we were on the road to IVF anyway when we found out that HD was a factor.

Best of luck to you and your family.

Thanks for the responses. It's good information.

I guess deciding to test or not is the first step before thinking about the methods. Hopefully that won't be necessary.

Where can you get anonymous testing performed and how is that kept private?

Mike

Hey Mikee,

I tested anonymously. Found the testing center link through the HDSA website, and started calling the ones nearest to me. The 3rd one I called does do anonymous. I'll PM you which it was.

Publicly I'll say that it sounds like testing is the SMARTest thing for your son to do (after getting Life, Disability & LTC insurance or being in a position to take advantage of military benefits), but that does not mean he's emotionally ready for it, or ever will be.

When I decided to test, myself, 3 years ago, I was SURE I wanted to. And I never understood those who felt differently. That is, until I got my positive result, and saw how that was even so much worst than the stress of not knowing. I still think it was a good choice for me, but I totally see why it's not a path for everyone.

If he doesn't want to know, that still leaves them the IVF PGD option, as mentioned above, or "the regular way" and taking their chances. I'm not a parent, and I personally think there will be a cure soon, but many people here have said they would not gamble with their children's health if they could help it.

Still, you'll have to continue to walk the tightrope between Advising & over-advising. Sounds like you're doing well so far, giving them some info. Hopefully he'll be receptive to your sharing a bit more of "forum advice", and then you'll have to be receptive to letting consider that info but make their own decisions.

Sounds like you have a close family. That is nice.



Edited 1 time(s). Last edit at 02/17/2013 01:17PM by smiling sara.

sara and others who face testing, all I can say is that my thoughts and prayers are with you today and always. Always. that is such a difficult thing to do. Someday, my teenage son will facing the same decision, and I loathe the day he makes such a decision. We all know the routine, you are going to worry the rest of your life if you don't take the test and you are going to worry-plus-more if you take the test and it comes back positive.

We need a cure for this disease, that is the bottom line! God bless all of you.