My story begins a few years ago when my I found out that my fiance's (JR) mother was diagnosed with Huntington's disease several years before she passed away. JR and his mother had a very troubled past because of her instability, therefore they did not have a relationship at all really. When I found out, I read about Huntington's a bit online, but nothing major and did not appreciate the severity of this disease.
Fast forward... I did a research paper for my anatomy class on Huntington's disease. The more I learned about this disease, the more concerned I have become. I would like to share some of my thoughts and appreciate any feedback offered. I do not feel like I can share my concerns with JR or his family because they will not talk about it. I understand that I could be over-thinking the symptoms I believe he has, which is why I am hoping this forum may give me some guidance.
JR is 35 years old, a bit overweight but not obese. In his late 20's he began to find it difficult to maintain an erection (this was a previous relationship). After we were together a few years, the issue resurfaced. This has been discussed with his doctor. Blood tests and evaluations found no real cause. We have struggled with this for at least four years. Doctor prescribed Viagra which does not really help. It seems to me that a 31 year old who is having such an issue, the doctor would want to find out why. I moved beyond thinking that it is me a while ago.

He often gets choked while eating for no reason. He says it feels like food is stuck in his throat. He runs to the restroom and typically does not finish eating. Doctor's diagnosis was GERD and medication was prescribed a couple of years ago.

He has no energy anymore. He sits at a desk most of the day and is exhausted when he gets home. Unless he is practicing baseball with my son, he is on the couch or in bed. He would sleep all of the time if he could. Recently, there are many mornings that he goes in late to work because he cannot make himself get out of bed. He does not want to go out and we have pretty much stopped hanging out with friends. I encourage him to exercise, but he has no drive at all anymore. He seems withdrawn sometimes and I honestly do not know how to act or help.

He has become a different person and I just do not understand. When I did the research on Huntington's disease and began to read other discussion forums, I began to feel like it made some sense. I hope that it is not the case. I know that he is young, and that it is too early for symptoms (I guess). Any input would be greatly appreciated. Thank you for taking the time to read my post.

Have him test for low testosterone. Viagra doesn't help with that. Replacement therapy like AndroGel could help his energy level, which could help with a lot of those symptoms.

Will

That was my first guess. His testosterone levels are normal.

Also, he has not shared with his doctor that his mother had HD.



Edited 1 time(s). Last edit at 05/15/2012 08:54AM by HeatherDawn.

For my former husband viagara did not help either, he has HD. Also his choking symptoms could be HD, however I have gerd and the same thing happens, there is medication that can help, and it has helped me tremendously. My former husband also lost all interest in socializing or even leaving the house. He COULD feel uncomfortable about eating in public tho too. I vote for an HD test to help with all questions.

He does not like to eat in public. If he has a meeting for work where lunch is served, he ususally will not eat and waits until he gets back to the office. He gets very defensive when I try to bring up his medical history and how important it is to tell his doctor everything. I would respect his decision to not be tested if he made that choice. He used to be this outgoing guy, the life of the party. It is hard to explain, but he is just different. If it were not for my son (who is 8), he would not leave the house. I become frustrated, which I hate because I am worried that he just cannot help it.

It's not too early for him to be experiencing symptoms. The average age of onset as defined by noticeable motor symptoms is 39.5 years of age and cognitive and psychiatric symptoms can be evident years earlier than that.

It would be unusual for choking to be a problem early in the disease process although not unheard of. I don't know of any connection between HD and erectile dysfunction. Has he been checked for diabetes?

The exhaustion and apathy do concern me however. I'm wondering about other early symptoms. Is he unusually irritable about trivia these days?

He has been checked for diabetes and it is not prevelant in his family history. While doing my research on HD, the mention of ED is what really made me worrry. He is easily irritated and often loses his temper for reason that seem completely irrational to me. He plays video games and his reaction to doing poorly is over the top. It has gotten to the point where his behavior and language is so bad that I discourage him from playing when others are around (even my son). He used to play softball and basketball with friends, however he gets so angry and upset. He has always been competitive, but even his friends that have known him most of his life do not want to play with him because of his actions (I feel like I am talking about a child). He helps coach my son's basesball team and was beginning to have these same reactions. I told him he would have to stop coaching if he cannot control his anger.