Comments on: Psychiatric Illness in Huntington’s Disease http://brainblogger.com/2009/01/16/psychiatric-illness-in-huntingtons-disease/ Topics from multidimensional biopsychosocial perspectives Thu, 09 Feb 2012 17:27:25 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: JOAN EVANShttp://brainblogger.com/2009/01/16/psychiatric-illness-in-huntingtons-disease/#comment-614172 JOAN EVANS Sat, 31 Dec 2011 12:39:34 +0000 http://brainblogger.com/?p=2095#comment-614172 MARYJANE, HD runs in my family. I have lost my dad, sister and recently, my brother. It's just me left and I was lucky enough to be tested a few years ago and do not carry the gene myself. My entire life i have been caring for someone with HD. It is only now that my brother is gone that i am realizing the psychological toll it has taken on me. My dad got sick when i was a little girl. When he died we thought that was it. But 2 years later my little sister started showing signs. When she passed i thought my big brother and i would be the lucky ones. But no such luck. 2 years after our sister passed he started showing signs. He lived nearly 20 years with the disease. I would imagine that your husband has had a very similar life. My entire life, until i got tested, that was always there in the back of my mind. I tried to ignore it but realize now that my life has gone by and i haven't enjoyed it. My time was spent feeling guilty about not having HD and cared for each of them the way i would have wanted to be cared for. It is a terrible disease. Your husband can't help what he does. No matter what drug they give them, i can't even imagine how i would feel if i had been diagnosed. I know i would have been very mad, and i'm sure that is what they feel. Their entire life is taken away and the horrible part is that they no doubt watched many a member of the family go through this and they know where it will lead. It is very sad, i am so sorry for you and your husband. The only advise i can give you is Be strong for him. Find something that makes you feel good and when things get tough, drown yourself in it. Find something that consumes your mind to take you away from that place you don't want to be. Keep in mind that no matter how bad things get, you can get up and walk in the fresh air and feel the sun on your face. He has been condemned to a long, drawn out life of suffering knowing that it is just leading to death and it's only going to get worse. Most of all, have faith that you are where you are for a reason. If he is lucky, you will stand by him. If he isn't, besides having this horrible disease, he will go through it alone. His friends will leave because they can't stand to see him decline. The famous saying is "I WANT TO REMEMBER HIM AS HE WAS". This attitude is what really hurts you because you have to watch as he goes down hill or you can walk away, just like they did. This has been my experience. My brother was lucky enough to have three good childhood friends that came to see him until the end. Only a couple times a year but it meant so much to my brother and I, especially me. I would love to hear back from you and see how you are doing. Be strong. MARYJANE, HD runs in my family. I have lost my dad, sister and recently, my brother. It’s just me left and I was lucky enough to be tested a few years ago and do not carry the gene myself. My entire life i have been caring for someone with HD. It is only now that my brother is gone that i am realizing the psychological toll it has taken on me. My dad got sick when i was a little girl. When he died we thought that was it. But 2 years later my little sister started showing signs. When she passed i thought my big brother and i would be the lucky ones. But no such luck. 2 years after our sister passed he started showing signs. He lived nearly 20 years with the disease. I would imagine that your husband has had a very similar life. My entire life, until i got tested, that was always there in the back of my mind. I tried to ignore it but realize now that my life has gone by and i haven’t enjoyed it. My time was spent feeling guilty about not having HD and cared for each of them the way i would have wanted to be cared for. It is a terrible disease. Your husband can’t help what he does. No matter what drug they give them, i can’t even imagine how i would feel if i had been diagnosed. I know i would have been very mad, and i’m sure that is what they feel. Their entire life is taken away and the horrible part is that they no doubt watched many a member of the family go through this and they know where it will lead. It is very sad, i am so sorry for you and your husband. The only advise i can give you is Be strong for him. Find something that makes you feel good and when things get tough, drown yourself in it. Find something that consumes your mind to take you away from that place you don’t want to be. Keep in mind that no matter how bad things get, you can get up and walk in the fresh air and feel the sun on your face. He has been condemned to a long, drawn out life of suffering knowing that it is just leading to death and it’s only going to get worse. Most of all, have faith that you are where you are for a reason. If he is lucky, you will stand by him. If he isn’t, besides having this horrible disease, he will go through it alone. His friends will leave because they can’t stand to see him decline. The famous saying is “I WANT TO REMEMBER HIM AS HE WAS”. This attitude is what really hurts you because you have to watch as he goes down hill or you can walk away, just like they did. This has been my experience. My brother was lucky enough to have three good childhood friends that came to see him until the end. Only a couple times a year but it meant so much to my brother and I, especially me. I would love to hear back from you and see how you are doing. Be strong.

]]> By: maryjanehttp://brainblogger.com/2009/01/16/psychiatric-illness-in-huntingtons-disease/#comment-534169 maryjane Mon, 11 May 2009 03:49:03 +0000 http://brainblogger.com/?p=2095#comment-534169 Hi my name is Maryjane Roberts and I have a husband who has HD. We have been together for 13 yrs and he is driving me insane and others around me. I am looking for support to help us both through this. Hi my name is Maryjane Roberts and I have a husband who has HD. We have been together for 13 yrs and he is driving me insane and others around me. I am looking for support to help us both through this.

]]> By: Tammyhttp://brainblogger.com/2009/01/16/psychiatric-illness-in-huntingtons-disease/#comment-415926 Tammy Fri, 23 Jan 2009 05:27:12 +0000 http://brainblogger.com/?p=2095#comment-415926 Hi,I am a caregiver for my best friend Nola. Nola has not received any neurological attention for nearly 8 years. She seems to thrive with much social stimuli. If there are time-lines you want for the progression of Nola's disease, I would be happy to help. I have known Nola since 1987. Her first sign of HD was in February 1989. Nola is nearly in her 20th year of HD, and I have been around for nearly all of it. I have also been around her daughter since she was 3 1/2, and feel certain she has the gene. I've known her son since he was born 15 years ago. I've so far not sensed HD in him, the way I sense it in Nola's daughter.Sincerely, T. Fortner Hi,

I am a caregiver for my best friend Nola. Nola has not received any neurological attention for nearly 8 years. She seems to thrive with much social stimuli. If there are time-lines you want for the progression of Nola’s disease, I would be happy to help. I have known Nola since 1987. Her first sign of HD was in February 1989. Nola is nearly in her 20th year of HD, and I have been around for nearly all of it. I have also been around her daughter since she was 3 1/2, and feel certain she has the gene. I’ve known her son since he was born 15 years ago. I’ve so far not sensed HD in him, the way I sense it in Nola’s daughter.

Sincerely,
T. Fortner

]]>