Have just found out this week that my husband is indeed HD positive. He and his 3 siblings were all tested over the summer and he is the only one positive. I suspected it all along but the actual confirmation is still gut wrenching. I wanted to share with you all something I wrote when I began to suspect that he did have HD....

"Funny thing about a freight train, you can hear its approach by the distant rumble. You can judge the time you have before it is upon you to be safely out of its way. If you knew a freight train was coming you would get off the tracks or would you, could you?

And so it is with the freight train that has been running through my life! A horrible disease that has no cure and is always fatal. A disease that you or I may have heard about in passing, but didn't know anything about. A disease that was making an approach and was about to tear life as I knew it to shreds. A disease that all too soon I was going to know far too much about, a disease that would have me searching the internet for hours for more information. What I found left me feeling hopeless and helpless, scared and alone.

I can only write about this monster from my perspective. I am not the one that has this disease and I can only imagine what it is like for the one who is being consumed by it. I am not ill, but I am deeply affected by the course and inevitable outcome of this disease.

Having said that, my life has not always been a nightmare. He was (and is) the love of my life, we had so many good years together. We had the kind of love that others envied. We worked and played together like a fine tuned instrument. We each basked in the glow of the love of the other. Perhaps it was naive thinking on my part to believe that it would always be this way. Who could have seen the freight train that was approaching, far enough away not to be detected, but coming nonetheless. While the love is still there, it is different now. More like that of a protector without the expectations of anything in return.

It started in small ways, little things that seemed normal at the time. Things that in anyones life could be attributed to stress or a myriad of any of lifes challenges. Now in hindsight I can see that it was an early warning of what was yet to come. Knowing what I now know would I have done anything differently? Probably not! I thought then that love could conquer anything, that whatever the issue was, it was a small bump in the road.

And so we carried on...smug in the joy of each other, living our dream, oblivious to the freight train that was moving ever closer..."

Dolly, you have touched my heart with your writing. I am so sorry that your husband is HD+, looking back, it seems like my life is completely and irrevocably split into before we knew and after.
Just be easy with yourself and your husband during this time, things will change along this HD journey, that much is certain.

Take care,

Carla

I've read it over and over.

So sorry to hear this news...

So sorry to hear this, wishing you all the best.

Hi Dolly,so sorry to hear about your husbands diagnosis.
I too heard that train comming for years,one day hope ,one day fear,one day anger.
The day we got the actually diagnosis ,that he had it.I had already know, but the actually hearing it was gut wrenching.
I immediatly went to into getting all the info i could ,and back then was snail mail and we didnt have a computer.
I never really fully knew what lied ahead ,cause i never knew anyone with it ,his father but i saw him twice.
Only my imagination to fall apon,so thats what i did,i played secenarios over and over in my mind ,how i would handle
this or that.
I went into caregiver mode immedialty,my guard went up,depression set in.
I think we live as caregivers in a permanent state of high alert.

We slowly learn with HD there are at first some suttle changes we had to make,then we learned to keep it a secret from
the world,then we learned we have to lie to protect or loved ones.
We are on that train today it came along time ago,i got the ticket when my daughter took her first breath.
My husband got his ticket with his first breath ,now we are on that train ,it made a pit stop and let my one daughter off.
She never got the gene.
You are not alone dolly,seek help i didnt ,i didnt need help ,was so busy with i can handle it all,and i did.for 20 plus years.
Lived with the hope everyday that a cure would be found was so sure it would ,come on they had like 20 years to save my children.
Oh the train it may feel like it hit you,but it didnt ,it picked you up.
So hello nice to meet you ,you are still going to smile,you are still going to have happy days,you are still going to have
many good days ahead.
We may not be your typical families on the inside ,but yah we are still thriving in our on ways.
As a caregiver i also have had some very rewarding days.And yes for sure days where i just want to die.
Today im tired ever so tired ,im lonley,im scared,im still in that high state of alert and have been for so long it is exhausting.
But in about 10 min iam going to see my hubby and take him some breakfast ,and wipe his face and hands and tell him he is a pain in the ass lol again.
He will laugh at that ,he knows he is lol.
I will scan his body ,look into his eyes to see any sighns of sickness or pain for him cause he cant talk any more.
And then i will sit beside him one eye on tv and one eye on him ,but my mind will be on that train.
Cause it is still comming for us 50/ 50 two more children God help them.
After i see him it hurts for about an hour ,mixed feelings ,but then it also refuels me and makes my day ,he is my reward
in life his smile his smell,his memories are mine all safe and sound in me.
Would i have known all this years ago would i of not got on that train,yes i would all good one day at a time.

Thanks all for the encouragement! As soon as I suspected what he had I went looking for help. I joined an HD support group and they have been a godsend and wealth of information for me. His brother and sister-in-law have been coming to the group as of late. They are dealing with my husbands mother who also has HD. They also offer a lot of support for me, getting my husband to his appointments and just listening to me when I am so frustrated.

My husband still thinks he is perfectly fine even though we have the positive result. We have lost everything, the house, the business, drivers licence and almost each other. He has not worked for over a year now. He suffers greatly from delusions and paranoia. He acts very childlike a lot of the time. He has some chorea, but that is not too bad yet.

My/our life has been nothing short of a nightmare for the last 7-8 years. Now that we are 100% sure of the diagnosis I find it easier to accept his changed behaviours.

I know this isn't going to get any easier especially for him, but at least now we can head in the right direction and try to improve the quality of whatever life he has left.

I do write a lot about my experiences with him and the effect it has had on our marriage. I will try to share some of those writings with you from time to time.

Your husband may be able to get SSDI which could be a help to your family.