Hi everyone, not sure how many may remember me. It's been years since I've been on here. My husband is HD positive and our daughter Jordan JHD positve. Since my last post or I think only on chats...My husband was placed in nursing home February 2010 and Jordan passed away at age 12 July 29, 2011. Just wanted to reachout and say hi to some "old" friends and stress, what a long road this disease is..yet how much we learn about life, respect, love, and understanding...

OH How sorry I am to hear about Jordan's passing! I'm sure you miss him terribly. Please stay with us I know you'll be a huge help to others. Pat

I do remember you, Stacy. I am glad you stopped by to update us. I am sorry your husband has progressed so far and please accept my deepest sympathies in the loss of your beloved daughter, Jordan.

Hugs,
Marsha

Stacey are you in NJ? and maybe I worked where your husband worked?

I am sorry to hear you lost your daughter at such a young age. Prayers to you and your family.

I do remember you Stacy Remember there were 3 Stacy's, and i used to always ask you in the chat which Stacy this was Stacy, i'm so sorry to hear all the changes in your life, and so very sorry to hear about Jordan. I'm sure this is still not only heartbreaking, but very hard for you to get used to the changes in your life. I'm glad you are back...take it one day at a time

Stacey, thoughts and prayers coming your way.

I'm sure that before she left this world, Jordan touched many hearts. I am so sorry for your loss.

Carla

Welcome back, Stacy. Sorry to hear of all the sorrows you've gone through.

So sorry that your daughter passed!

Thank you.. It is nice to be remembered! Yes MRO & Barbara..that's me.

So heartbreaking, Stacy. I'm so sorry for the loss of your daughter and all you've had to endure because of Huntington's Disease. My thoughts and prayers are with you. How is your husband doing in the nursing home?

It took my husband over a year to adjust to the placement. It was a very difficult time. The reason for his placement was orignally based on the risk he was placing on our daughter, a form of dementia in which he thought we had all this money for him to buy a recording studio, applying for over 100 credit cards, oh and yes applying to colleges and intending to ride his bike to other states. Needless to say, he took off in anger one day (like a threat & I would come after hime) So I called the police, spoke with his doctor and then call the emergency psyciatric screening service. From there he was he was treated & then I "refused" to take him home for safety- had him screened for nursing home care and he was placed in a local nursing home that has an HD unit. His sister had resided there before she passed on from the disease, and he and his brother now reside there. Any way, he had to be screened and hospitalized in the psychiatric unit probably 10 times in the year for threats of suicide, aggressive behaivor, and obsessive behaviors. Needless to say from January to now he only had one incident and was hospitalized for less than 5 days. However, this adjustment appears to be focused on the fact that I can't visit often. The more I visit, the more incidents and behaviors he exhibits. The more I visit, the more he thinks I'll bring him home. So every two weeks to a month is all I can do without him having issues. How hard this is-but I need him in a safe environment and the experience of the nursing home is the best.

Wow, Stacey, That must be very hard for you. You are doing what is best to keep him comfortable and safe, though.

Stacy,
That definitely has to be so incredibly difficult for you! I'm glad, though, that they're able to keep him safe, that's what is important. And I really hope you have a support system to help keep you sane! As I keep reading "HD Journey," it is so true that it is a journey . . . unpredictable, humbling, scary, but also, like you said, something that has taught us all so much about life and love. It's only something that people who have lived it truly understand, because you can't even begin to explain the real impact or effect it has on all your thoughts, beliefs and actions. What's even more difficult is that no two people with HD are the same, the course of the disease effects people so different, some more psychiatric issues, some more movement difficulties, others cognitive issues, unpredictable to say the least. I guess what it's taught me the most is the resilience that people have to really face the unimaginable and still get up in the morning and keep going . . . how we adjust to changing circumstances and try so hard to be happy in the face of such despair. Since Raymond passed away in April, I've been contemplating all these things in my mind over and over again, all he'd been through, all our families have been through and yet we were able to remember happy times and feel such incredible love from family and community . . . life is really a mystery.