The road of the caregiving spouse is very difficult. Sometimes just overwhelming. You are only human trying to manage in a very difficult situation. Caregivers are only people, we are not Saints. Forgive yourself often.by Concerned partner - Huntington's Disease Support Center
eve Wrote: ------------------------------------------------------- > Liz, you are not weak, you are wise. You have to > take care of yourself and getting on some > medication is worth a try. I'm on something and > it didn't work overnight and it's not like a > miracle happy pill, but it has taken the edge off > my anxiety and depression. I urge you to give it > someby Concerned partner - Huntington's Disease Support Center
Yes , in my experience as an ex-spouse the movement symptoms can come much later. My ex has a count of 41 but not a lot as far as movement symptoms. However the emotionally, anger, psychological, brain processing speed symptoms have been there for a long time. HD is diagnosed as a movement disease but the other symptoms can appear long before. This depends on the areas of the brain that the diseaby Concerned partner - Huntington's Disease Support Center
Welcome to the site, I am only a spouse, but it seems reasonable that other diseases can exist in the same brain as HD. My ex has the same CAG of 41, plus a diagnosed learning disability from early years. Tested gene positive at age 52, diagnosed with clinical HD at 55.Left the workforce at 54. Living independently and still driving at 60. The HD assessments indicate that the cognitivby Concerned partner - Huntington's Disease Support Center
I am so sorry. It is the everyday losses that are so hard. CPby Concerned partner - Huntington's Disease Support Center
I will speak from the perspective of the ex-spouse who married into an HD family. The family knew but was in severe denial. A neighbour of the family told me I should ask what was wrong with the health of my future mother-in-law. When I broached the subject, the family denied a problem even though I learned later a doctor had suggested it was HD (this was prior to the availability of testing)by Concerned partner - Huntington's Disease Support Center
I have been very troubled by this thread and have delayed perhaps too long in putting my comments forward. I have been on this message board for seven years since my ex-husband received a positive blood test for HD. I have learned a tremendous amount from Barb over the years about what it is like to be a person with HD. For that I will be eternally grateful. Barb was one of the first individuaby Concerned partner - Huntington's Disease Support Center
yes, he does live in Ireland.by Concerned partner - Huntington's Disease Support Center
I would concur with Marsha's message that cognitive, psychiatric symptoms can present themselves long before the movement symptoms. The research supports this. Unfortunately it is the movement symptoms that largely define the threshold of the disease. In my experience, now an ex-spouse with a lower CAG count (41), it was the cognitive/psychiatric that became very problematic in our marriage.by Concerned partner - Huntington's Disease Support Center
Contact me through private messaging. I am happy to help you.by Concerned partner - Huntington's Disease Support Center
Yes, my ex-husband told our adult children terrible lies about me after I had left him. I left because he was abusive would rage and threaten me. I didn't feel safe, and I had no family to call on to help me. He told my kids I had multiple long term affairs (which just wasn't true), that I had run-up credit cards which he couldn't pay (in fact it was him who ran up the cards), told one of myby Concerned partner - Huntington's Disease Support Center
Shar, Did you not read this statement in the original post? "I have chosen not to get tested at this time and we have decided to get CVS testing during week 10 of pregnancy and to terminate if HD positive. (this is not an abortion debate---we are comfortable with this choice and cannot afford the 15K price tag of selective IVF. Which is NOT to say we can't afford a child, so, please,by Concerned partner - Huntington's Disease Support Center
Hi Janigirl, Ask the dentist to send her for a cone CAT scan. I had terrible jaw pain that no one seems to be able to figure out why. Turned out that I had infected cracks in the roots of a few teeth from grinding. This resulted in infected bone. Nothing showed on many different kinds of X-rays. It was so painful. It wasn't until someone finally sent me for the cone CAT scan that something turby Concerned partner - Huntington's Disease Support Center
I thought that some of you may find this website interesting. It is a online data base of doctors' prescribing habits for Medicare patients. It appears that if you have your doctor's name (assuming this would work for specialists too) you can learn the most commonly prescribed drugs. It looks like a reliable source. I found it through a fibromyalgia message board. CPby Concerned partner - Huntington's Disease Support Center
Hi Ken, Welcome to the site. I am in Ontario and went through the diagnostic process with my spouse so I could offer some guidance on the Ontario HD experience. It probably is not much different that anywhere else in Canada. My spouses first symptoms were difficulty sleeping, slower mental processing, and irritability. He would twitch his fingers as though he was playing the piano, and couldby Concerned partner - Huntington's Disease Support Center
I know that what I am going to say that I except is not going to be very popular. There is more to parenting than just having an HD free child. Having a child also means being able to parent that child throughout his/her life. I grew up in a home with a really ill parent (not HD) and it is not a nice childhood. My spouse has HD and my at-risk adult children have decided not to have children ofby Concerned partner - Huntington's Disease Support Center
I know I am not of much help because I am in Canada. But have you tried contacting the Huntington's Disease Association of Ireland. They do have a website with contact information. I hope they can point you in the direction of getting some help. The cognitive psychiatric symptoms of the disease are certainly difficult to deal with. There are many of us who have been here who have experiencedby Concerned partner - Huntington's Disease Support Center
Thank you for raising this topic.by Concerned partner - Huntington's Disease Support Center
When my kids were little they both had exzema bad. My doctor gave them prednisone but it didn't really work that great. Then I discovered coconut oil from the health food store. I spread it on the rash thickly twice a day and the exzema disappeared. My doctor was amazed and told me to keep using it. I still use it for rashes.by Concerned partner - Huntington's Disease Support Center
Barb, so nice to see you posting again. I missed your wisdom.by Concerned partner - Huntington's Disease Support Center
Go to Wikipedia and read what is there. It looks like it is just good promotion through a multi-level marketting scheme. Appears there have been no double-blind human studies done. Not good enough science for me.by Concerned partner - Huntington's Disease Support Center
My ex-husband and his brother both did that toe curling thing. Both were diagnoised HD over a period of time. The other thing in retrospect I remember is my ex- not being able to keep steady pressure on the gas pedal of a car he was driving. That started really early. The other things he started was a hand waving over his head or scratching motion, and asking others to repeat what was said. I camby Concerned partner - Huntington's Disease Support Center
I feel badly even suggesting this, but my father had congestion and constant coughing prior to be being diagnoised with lung cancer. His doctor had him on three rounds of different antibiotics and when they did nothing, sent him for a chest X-ray. Maybe a chest X-ray would be useful just to rule out anything more serious.by Concerned partner - Huntington's Disease Support Center
My ex-husband's sense of smell was affected early. He became particularly sensitive to perfumes, hair products, etc., and would rant about how he couldn't stand the smell of any kind of product including unscented soap. Food smells didn't seem to bother him, but I don't know how he is now three years later after our separation. CPby Concerned partner - Huntington's Disease Support Center
Bob, I am really sorry for the loss of your daughter. My young women are so precious to me, I cannot imagine losing one of them. CPby Concerned partner - Huntington's Disease Support Center
Yes Marsha, I like your comments and interpretation, and then a link to read more. Your comments help me read through the science that I don't always understand. I pray daily for my two adult daughters that science can give them the opportunity to dodge to HD bullet. CPby Concerned partner - Huntington's Disease Support Center
I wish I did not have to worry about my adult daughters and their at risk status. They are young adults with their lives ahead of them. My ex-husband refuses any support from me and tries so hard to be independent. I feel that my daughters carry a heavy load with seeing their father's disease progression, trying to support him, seeing the flaws in judgement that he makes, and worrying about theirby Concerned partner - Huntington's Disease Support Center
Let me start me start by saying that I am in Canada. So far my family, ex-spouse diagnoised with CAG 41 (age 58) and living on his own successfully but not working for a few years now, and my two daughters in their late twenties. I have decided that in replacement of Christmas gifts I would like to donate to research for HD and Breast Cancer ( I am a BC survivor). My daughters are at risk forby Concerned partner - Huntington's Disease Support Center
I noticed finger twitching, toes that looked like they were playing scales on a piano, irritability so that I felt that I was walking on egg shells a lot, slow mental processing speeds because I wondered if he was going deaf but eventually he would respond to what was said, very light sleeping and easily being wakened, then evolving into anger outbursts and threats when he was tired. Obsessing abby Concerned partner - Huntington's Disease Support Center