Huntington Disease Lighthouse Families

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Help.... Is it HD?????

Posted by karlat 
Help.... Is it HD?????
May 30, 2013 02:12AM
Hi... My Husband has a CAG of 42 we found out 2yrs ago hes nearly 46... His mother is 62 her CAG was 44 her mother also passed of huntingtons, I am my mother n laws care giver and she is really easy but is in the last stages, its my father n law i find is a problem, hes a chronic alcoholic. My husband has always been hard work but recently hes becoming a nightmare i always feel im walking on egg shells hes rude, talks to me like im an idiot, everything that goes wrong is my fault, but more than that he flipped out one night and the police were called... I dont know if its HD but im always tired and never the happy person i used to be.. I dont laugh much anymore and worry constantly about our kids especially our son my husband can be very nasty towards him as he has dyslexia and our daughter is the apple of his eye...

Karla
Re: Help.... Is it HD?????
May 30, 2013 10:43AM
Sad to say, but it sounds like the symptoms my husband displayed in the early onset of the disease. It's time for him to seek help from a neurologist or psychiatrist for meds to regulate his mood. It takes time to find the right combination, and even then, the disease will continue to alter his brain chemistry, so meds will need to be adjusted too.
Try to keep a journal of his behaviors and what seems to trigger them. I can tell when it's time to see the neurologist again by my husband's reaction to sports on TV. When he starts getting more and more agitated at the coaches and referee's, screaming at them while he paces around the house, I know that it won't be long before he's unable to calm himself down, then start turning his anger towards me or our kids.
I also know he does not do well around the holidays or any situation where his daily routine is interrupted. Travel outside of state is kept to an absolute minimum (learned that one the hard way after attempting a Christmas trip to CA).
Be prepared for totally irrational behavior at times. One time my husband turned our family room into his personal man cave (ping pong table and bicycles on the wall, etc...). He moved all our living room furniture into a small room in the front of the house and shoved the piano and wall art in the garage. I was so upset I moved out for a few weeks. I had to come to peace that my idea of marriage was over. I was to become his caregiver, and find a new way to love and care for him. There have been many ups and downs, but I have the support of my family and a renewed relationship with God.
I know it's extremely difficult to have a sense of humor, but please try to get one asap, because you will definitely need it in the years to come. If I didn't have such stage fright, I think I could be a comedian based off of some of the ridiculous situations my husband has gotten himself into, and that I've had to explain our way out of. Gotta laugh, because crying gives me a headache and makes my face red and puffy.
P.S. If you're able, try to schedule a massage, pedicure, facial, etc... once a month. If you can't afford it, ask a friend or family to give you a home made one. I bet they won't turn you down and will be happy that they are helping you in some way.
May God bless you and give you and your family strength.
djc
Re: Help.... Is it HD?????
May 30, 2013 02:49PM
Thank you... Any advise is helpful....
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