So I spoke with DH's dr. at the nursing home yesterday. DH has been more shaky again lately than he had been and the dr. wants to increase the chlozepan (sp?) dose. He is also saying now that he wants to look into whether DH may have a form of Huntington's Disease.
This latest hit me like a ton of bricks. I'm no medical expert, by any means, but I do know that Huntington's is about as hereditary as you can get. If a parent has it, there's a 50% chance that their children will get it. I immediately thought of our 3 boys. I was at work, so I couldn't go completely to pieces, but I felt like it.
Of course, neither of DH's parents had this or even dementia, which I pointed out to the dr., but his response was that it has to start somewhere and could be starting with DH.
Have you ever heard of such a thing? I suppose it's true, that it has to start somewhere, but to me it seems like a long shot. Still, now I'm waiting to hear back from him. He's going to consult with DH's neurologist and maybe the geneticist that ran tests for Alzheimer's (it appears that DH doesn't have that gene, which doesn't surprise me, since no one in his family had dementia as far as anyone knows.), to see if they should now test for Huntington's.
I am so p**ssd and confused. It seems like they're just stabbing at things, no one knows what DH has at this point. I feel like I need to know, but if it does turn out to be Huntington's, I truly don't know how I'll be able to handle it, knowing that any or all of our boys have a 50/50 chance of ending up like this. I don't feel strong enough to endure that. As it is, they're the only reason I get up in the morning and go on. To know that they may have no future is unbearable.
I wish I could crawl into a hole until this latest storm passes, but I can't. Last night I had to host a sleepover for the boys and appear at least reasonably cheerful. Thank God, I got through it.
I don't know how much more I can take of the not knowing and the worrying. Today, I feel like screaming!
I have said a prayer for you Kelly and of course your DH. I do hope the doctors can come to a conclusion and be able to help your husband. Hang on to the ever present rope. God Bless.
Kelly, I am so sorry you are going through this phase of the unknown diagnosis. I think not knowing is worse than knowing something, at least we can deal with what we know but the unknown we have no control over. Just think that if the boys have a 50% change of getting Huntington's disease they also have a 50% chance that they WILL NOT get it. It is just as likely that they won't, and will live a happy normal life.
No matter what, all we have is what we have today, none of us are promised tomorrow, try to enjoy them today, live each day as it comes Kelly. The Doctors are only guessing at this point.
Kelly...big hugs...remember that the symptoms of many of the neurodegenerative diseases are similar. Good news that AD genes were negative....now get to the bottom of new symptoms. Remember...given the ages of your little ones....hope for cure and altering some if not all of our current diseases is on the horizon.
Hopefully you have spoken to your neurologist re your concerns. Keep us posted.