My ex-husband has Huntington's and my 35-year-old son is now showing symptoms of at least early stage. My son had the genetic testing as soon as it was available, so we knew he had inherited it before his father ever admitted that HE had inherited it.
My son has had disrupted sleep patterns, deep depression, social anxiety, and negative-cyclical thinking for some time. He makes strange decisions about his living situation and has twice been voluntarily homeless, living in his car, rather than come live with me (although we get along well). In both homelessness cases, I managed to get him off the street. In the first case he eventually got back into a rent-share with other young men and did all right for several years. The last time he went to live with my brother because I was working clear across the state, but simply declined from there until I quit my job and came back and worked out a new situation where he lives with me. For the last three years he seems unable to keep a job because of depression. The slightest things send him down into a deep depression. He is convinced that no one will hire him and won't apply for jobs. I finally just dropped him off at a day-labor temp service and told him to sign up. He was furious with me and felt it was a complete waste of time, but of course they immediately hired him and he rapidly became one of their favored employees and contractors called to request him and so on. The fact is he is usually highly valued as an employee, his bosses want to promote him to management positions quickly, and he works hard and needs no supervision. Until he suddenly dips into a depression and can't show up for weeks. Even then, they seem happy to have him back when he bounces back.
Recently, I helped him find a job with a friend of a friend who is familiar with mental health issues and gives him tons of leeway. It's a great job and my son loves having money again, and has been almost cheerful from time to time. Still, when he begins to get depressed and miss work he cannot seem to call his boss and explain the situation and instead adds his shame and negativity to the issue and dives further down until I eventually end up calling the boss to explain. He's not going to get fired. HIs boss just says, "Feel better soon. We want YOU not someone else."
Just yesterday my son finally went to the doc, and admitted he needed antidepressants. HUGE step. I also began going to a therapist, because I need someone to talk to, and my therapist suggested that given the history of Asperger's in the family (particularly my siblings) I look at the possibility that my son has Asperger's in addition to Huntington's. I at first rejected the notion, but it took me about four seconds of hesitation after the initial rejection to think, "Wow, that would explain a lot."
Anybody else thinking about dual diagnosis?

Hi. Sorry to hear your situation but glad to see how you are dealing with it. I'm sorry about your son. I too have a son that is HD risk. He is 21. His father was diagnosed last august and his grandpa and great grand pa both died with the disease. My son was tested in April and told me he tested negative but will not let me see the results and refuses to let the dr talk to me about it...so my suspecisions are that he wasnt negative at all but just don't want us to know....time will tell. I have a post on here called "my story" it will give you more of an understading of my situation. My heart breaks for you. It is hard enough watching my husband but to have to watch my son suffer with this will be a whole different story. I'm sure the medication will help him greatly.
It's good that you found this website cause it is a wonderful support system for me.
Hang in there and feel free to pm me if you'd like.
Liz

Thanks, Liz. Actually, we didn't see my son's Dad's decline. I divorced him earlier in our marriage and (by his choice, not mine) we have not seen him in more than 18 years. I sometimes hear from extended family about him, but he doesn't contact us. We did see my son's Grand-dad progress up until he chose to enter a state hospital, but his situation was very, very controlled and he voluntarily checked himself into the hospital when he began having emotional difficulties (jealousy over wife/other disorganized thought/advanced chorea.
I'm not much of a crier, more of an "all right, let's get busy and work with this" sort. I certainly worked on a more Zen attitude throughout my life because of the amount of untreated mental illness in my own family of origin and growing up with that. I read widely and studied psychology (even before university) and eventually got into therapy myself to figure out "why people did the things they did" and that's when I learned my family wasn't just 'crazy' by my standard, but there was some mental illness evident by professional standards. I was an adult by then and began getting my siblings into therapy and that's when they got their various diagnoses.
Both of my siblings are doing remarkably well now that they have accepted their diagnoses and worked to deal with what is.
Which is not to say that I expect the future to be "easy" to deal with. But that whole Zen "accepting what is" thing does seem to help.
Kathleen

My son is on the autism spectrum and is also at risk for HD. He was very young when we found out it was in the family (late onset in his grandfather who had no known history). I truly hope he isn't HD positive because he already has enough things to deal with. He is young (still in elementary) but also has a lot of negative thinking. We have had some medication changes that have helped (some meds have made things worse...everyone reacts differently). I'd like to think my husband has no symptoms, but in reality there are probably some soft signs. He has some anger issues and also has become a bit of a germaphobe. Also he seems depressed. I'm so happy your son is getting help. Remind him that everyone reacts differently to meds plus some that work for awhile might not work as well after long term. I like your Zen approach. I will try to problem solve, but sometimes a person does have to accept.

Eve,
you are soooo right about "sometimes a person does have to accept"!!! It has been three years of my working on this without being "pushy" to get to this point. I decided that while I wouldn't give up solving my son's problems as much as possible, I needed to have a life of my own as well. I got into therapy because of that gap between my desire to be problem solving and the reality pushing the rock up the hill like old Sisyphus with regard to my son. Have to figure out how my own life goes forward while managing my son's life as much as he needs. Spinning more plates.
Best,
Kathleen

I'm thinking that your son is very eager when he works, and it sounds like he puts in more than 100%, and then he burns out. He could be bi-polar, which is a symptom of hd too, and that could explain why he works so hard, and then burns out. Wait and see how his anti-depressant works for him, but i would suggest actually something called Seroquel. It is both an anti depressant, and a mood stabilizer, which might really help him level out a bit



Edited 1 time(s). Last edit at 06/27/2014 04:53AM by Barb.