Now I know this disease is unpredictable but I wonder what your thoughts are on my thinking - my husband is at risk of HD. He does not have any symptoms, he is good at his job and very outgoing and likeable. His dad started with paranoia around 35 at the latest and in my mother in law's words was "acting up" before that. Now, based on the evidence, does that mean there is a good chance if my husband has HD he likely to start to show signs (coming down the father's line) at or before age 35? He is 31 now. i.e. if we can get past 35 without symptoms that is a good sign....

I find it so hard to believe that my husband could just change....

I think that you are trying to do something that I have done a thousand times---control the uncontrollable. My husband is a pHD and has beed diagnosed as "pre-motor" HD at this point. I have a million times looked at the history of my FIL who had the disease to try and get a handle on what to expect. My FIL was symptommatic for about 11 years before being diagnosed. He was violent---something I fear. However, he was also unmedicated. That being said, there are similarities....my husband is now 40...so he is about the same age as his dad. My husband knows he has HD and is on Celexa right now. we are seen at the COE every six months and he is "doing well"...my husband is not violent, never has been. His father was violent from his youth (15/16) so another difference. I can go on and on.....My SIL's both have HD are symptommatic and are identical twins...both manifesting differently. They're 4 years younger than my husband and progessing a little faster with a higher CAG (43 vs my husbands 42). The point is....you can trying a figure it out, but it sometimes defies the plan. I have often worked myself into such a frenzy worrying about the future that I forget today. Somedays it is harder than others. My therapist is very good at getting me to put it in perspective. If you are not in counseling...try it...or a support group. It doesn't remove the worry, but it helps manage it.

I had a friend, whose father and sister both started with symptoms in their mid-thirties, so when she was in her forties, she was sure she was not going to get the disease. She started with symptoms about a year before her fiftieth birthday. You really can not second guess this disease. If your husband gets the genetic test, you'll know whether or not he has the gene. If he is gene positive, you still won't know when symptoms will start. My brother's started in his mid-thirties, my dad's and grandmother's started in their mid-sixties. Also types of symtoms vary from individual to individual in the same family. I think the best advice is to live one day at a time, as another writer suggested.

I too drive myself crazy "trying to control the uncontrollable" and figure things out. I agree that it is probably impossible. There have been people on this site like Barb whose dad got symtoms after her. Also Will has a brother who has the symptoms but Will doesn't. Could it be because Will is very much into exercise, supplements and healthy lifestyle? People with the same CAG can have very different presentations. I think there are several variables. Some have said maybe the second "normal" huntington's gene from the unaffected parent can have some influence. Some think lifestyle such as stress, eating habits, exercise amounts, supplements etc might also play a factor. It's really hard to know with out the test and even then you still really won't know how things will exactly go. I don't want to rain on your parade, but my FIL wasn't diagnosed until he was in his 70's (first in family). Looking back, he had many symptoms, but everyone missed it for several years. This is not common, but my point is you can't go by age alone.



Edited 1 time(s). Last edit at 07/18/2011 01:52PM by eve.

It is a crazy disease that is completely unpredictable on an individual basis... there are statistical trends in terms of CAG but they don't help what will happen with an individual or family. Plus there are other factors that play into the equation... meds, awareness of the illness, head trauma etc. Unfortunately trying to figure that which can not be figured out will make you crazy... Before we understood HD better we were sure that there was no way my husband could have it because he was a star at work, so smart, great athlete with amazing coordination etc. His dad started to get symptomatic in his mid to late 50s. It is hard to tell with my husband because when he started to suspect he was sick he started to drink heavily which may have altered the course of his HD. He is now early symptoms and 49 years old.

We decided to test when the "does he or doesn't he" became all consuming. It is such a difficult disease to have to deal with in every way!

My father died of cancer at age 58. There were no motor syptoms of HD, but he probably had psychological symptoms for years. He was an occasionally abusive alcoholic, which the family always put down to his experiences as a Marine in WWII. We didn't know HD was in the family until my younger brother tested positive. By process of elimination, the gene had to have come from my father. My mother died in her mid-80s with no symptoms of HD.

My brother's CAG is 43 and mine is 40. He has had symptoms for years and I would say he's in mid stage at age 62. I'm still symptom free and will turn 65 in a couple of weeks. He has never exercised or taken a serious regimen of supplements. I would guess that the CAG and life style differences are equally responsible.

For LJH - one way to stop all this worrying about the unknown is to have him test. If he's negative, your worries are over. If he's positive, at least the uncertainty has been removed. He can then do all the proactive things that I and others are successfully fighting the disease with.

Will

Thanks for your posts. I think one thing about this disease that really gets me is how unpredictable it is. But then again maybe that's a good thing rather than knowing exactly when everything will happen. My FIL started in his 30s, he is 53 now and not got the chorea element at the moment. You're right Will that one way to stop this is to get tested but we are so scared of a positive result confirmed and no way of hiding from it. On the other hand we are desperate for a negative result. My husband has a very active and healthy lifestyle - he exercises 5 days a week most weeks, he doesn't eat fast food, he takes fish oil supplements. I think he is acting like he has it but trying to live like he dosn't.