Huntington's Disease Caregiver

Huntington's disease ( HD ).

I have a woman who comes in 5 days/week 8 hours/day Mon. thru Fri. to help with the care ,which is always 24/7. I have been doing this since the beginning of 2001 and cannot find a support group in my area.  I need to be able to speak with other HD caregivers to share experiences, ideas, care and thoughts.

Any assistance in this matter would be greatly appreciated.

swift621 swift621
61-65
5 Responses Mar 20, 2009

i feel for you, my wife and best freind has been sick for 12 years started at 36 now 48, we watch them suffer , they may make you feel like you do not want to even be there any more it is not there fault,, they still love you they focus on one person and take out all that frustration they have in side, they need us , we will never give up and must let them know today , next month , next year , will be there and they are still important and loved , as far as care goes do your best talk to your doctor and county , i only know iam lucky to have family which helps me out with out them i could not do it, never let your self get down and out , it is hard but if you cant help your self and get through a day as hard as it is we take that out on our loved one and that is not fair ,,,,keep your self healthy so you can take what comes ,there is so much more i could talk about some you may want to hear some you would not , after a long time dealing with this and the fear of watching my kids like a possible time bomb could go off best advise take it day by day to much thought about it beyond that will drive you crazy

I know what you are going through cause I'm also caring for my wife that has HD so I know how hard it is seeing her go downhill a day at a time. So just keep your strenth and cherish every moment you have with her. May God bless you both.

I was a caregiver for 4 years for my wife who died of cancer a few years back, I know how hard it can be man. This is the first i've heard of this disease, I wish you and your wife luck and better times ahead in the future.

You are going straight to heaven! I am 41 and I have been dating a wonderful man for 2 months. We are in love. He just told me that he has huntingtons. He said he would understand if I wanted to break up due to what lies ahead. I'm not going anywhere.

I had heard of HD but just went to NINDS to read about it which is where you can find my disease of Charcot-Marie-Tooth. I did not have a support group close to me either but I found a nice one online. There are groups on this site you can talk to, it's;<br />
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http://www.ninds.nih.gov/disorders/huntington/huntington.htm <br />
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(copy and paste to browser)<br />
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If you'd like I'll try to look more into it and help you. God Bless you and Take care.