Hi there,

Just recently my boyfriend of two months told me that he tested pos. for the HD gene when he was 22 years old (he is now 29 years old). He doesn't know his CAG count; I think he was more shocked than anything when his doctor told him that he has the HD gene. I do know that his mother who is 46 and in the later stages of HD began having symptoms when she was 38. Out of his grandparent's 6 children 5 have/had HD. I guess my question is if my boyfriend will have the symptoms of HD around the same age his mother began to have symptoms and whether the HD will progress as fast as his mothers...? I know his mother is in a wheel chair and cannot eat and can barely talk. Before my boyfriend told me about HD I had never heard of it. I have done alot of research about the disease, but my boyfriend rarely ever talks about it. I just have so many questions, such as if he knows his CAG count (also how much info. can get gained by knowing the CAG count), but I'm also not sure if I should bring it up...I appreciate any advice offered and am praying for those affected by HD that there is a cure or some way to slow/stop the progression soon. Thank you for taking the time to read my post.

Jacquie

Jacquie,

Welcome to the forum. It's very important for him to know his CAG count. It is very closely related to the age of onset and can be an indicator of the severity of symptoms. A person his age might make different life and treatment decisions if it's on the high side. For example, I'm 65 with no symptoms, but my CAG is on the low side of disease penetration (40). I decided not to purchase long term care insurance when I tested positive in 2003. If my CAG had been higher I probably would have.

Having the HD gene is not the end of the world. Many of us are living fulfilling lives with it while waiting for the cure. I'd suggest you encourage your boyfriend to read some of our stories on this site.

Will

How do you feel about it Jacquie ? Is it affecting your relationship?

Thank you for your replies! I don't know how to go about talking about HD with my boyfriend-he doesn't really ever bring it up unless he talks about his mom and then it's very emotional for him. In regards to treatment decisions, what is out there as of right now?? My b/f's mindset is that he won't get the symptoms until he reaches 38 years of age, which is when his mother began to get sick and I believe that he thinks he is going to be as bad as she is. I saw that there was a medication approved for use in HD that helps with movement problems; Does that somewhat slow progression? I believe I saw somewhere that most people die from HD due to pneumonia. Is it the movement issues that can cause pneumonia/fatal problems??

My b/f was very upfront about having the gene, which I believe is not always the easiest thing. I mean when really is the perfect time to tell a significant other that you don't want to have kids due to HD or that you may be wheelchair bound, etc.? What bothers me most is that I can't protect him from getting sick. I understand down the road that things may not be easy if he does get as sick as his mother, but that doesn't mean I am going to run away from someone I care for. I am trying to learn to live for today and hope for tomorrow. Some of the clinical research seems promising, I just hope time is on our side...

Jacquie,

It's a little different from what you have pictured. This isn't really as simple as "wheel chair bound". And the family issues are complex.I think you should maybe go back and read some of the older posts from people who are caregivers. Get a better feel for it.

Today is your first day on the forum, so spend some time going back and finding some of the threads and you can get a better feel for how spouses deal with this. So please go back into the archive (maybe up to 50 pages) and dig into it a little.

You can see after a while you may have some more ideas on the situation.

Jacquie-

You sound like a very compassionate caring person. Fred has a good idea in going through previous posts to get a better grip on what HD
actually entails.

My situation is that I married a man who has HD in his family. We have been married 42 years. He has had symptoms/HD for approximately
17 years. He did not know of HD when we married but we found out sometime later. We do have two children and grandchildren who are
the loves of our lives. I do hope and pray a cure or something that can keep the disease at bay comes quickly. There are medications
for HD that were not out there even 2, 3 or 10 years ago which have been a great help to us and many others. There are many studies and
trials ongoing right now.

In my life had I known that HD was in his family would I have married him anyway? The answer is yes. I fell in love with what he was and who
he was. Our lives have changed in the past few years with HD but we adjust and go on. Yes, there are some things I wish he could do but he
still can do many and I still enjoy just being with him. The way I have always looked at life is that anything can happen to any of us and I know
he would have been there if the tables were reversed.

I do give your boyfriend credit for letting you know at the beginning rather than waiting until you had been together for very long period of time
at which time it would have been hard for you to get out if that is what you choose to do. He took a chance telling you about HD and he knew
that but he is a very good person who felt it was only right that he leveled with you.

Good luck to both of you.

Sharon

If you ask HD families about their experiences and if they would "do it again" the answer usually correlates with age of onset. Those with late onset usually cite their many good years and often mention that "anyone could get hit by a bus." Those who have experienced early onset are usually more pessimistic and urge greater caution. I know that we all hope that lifestyle can deter onset, but let's be honest, age of onset is almost always predicted by CAG count and the parents age of symptoms. If your loved one has a low CAG count (i.e. around 40-42) there is a good chance that you will have many good years together and, yes, that old bus (or something else) might even get them first. If, however, they have a high CAG count (my daughter's is 60) you are probably in for a lot of misery in the prime of your life. In my case my wife was adopted and we had no idea that there was such a thing as HD. She was dead by age 33. My daughter became symptomatic at about age 17 and because of her and my dogged determination, is still going at age 29. We have made the best of her life and still have good times. I would not, however, wish our experiences, on our worst enemy. So, when deciding whether to spend your life in the world of HD (and Fred was right, it is much worse than simply being wheelchair bound), look at the parent with HD. There are exceptions (but very few) but most likely the child will follow a path quite similar to his parent. If I had had the chance to avoid HD, of course I would have. But I did not get that chance. Most honest people (especially those afflicted by early onset) would say the same.

We have only known about HD for about 3 1/2 years so it was never something I had witnessed or so I thought. Now when I think back I really believe that my husbands mother had HD, along with an Uncle and grandmother. His Mom though, was in early stages (if she did indeed have it) when she passed at 73 from something unrelated. The other relatives were also in there 70's I think, but my husband was diagnosed at 41 with more advanced symptoms than his mom. The difference? My husband suffered a traumatic brain injury a few years prior and had symptoms that seemed to advance rather quickly. I have no idea what his CAG count is and not sure I want to know.

I'm not sure if I knew then what I know now I would have followed the same path. Life is extremely hard. My kids are what keep me going, but I feel guilty everyday that HD may be their future also. I know I shouldn't because we didn't know it existed until after they were all born. I will never regret having them, they are my life. The advice about reading previous posts is a good idea, it's not an easy life.

Jacquie,

I am in the same boat as you. My boyfriend recently told me that he has HD. He's had it for about 10 years now and is showing the early signs of it. I didn't know a thing about HD until now. Reading about it makes me sick knowing the man I love will have to go through this. He was very upfront with me about it bc he didn't want me to get into somehting I couldn't or didn't want to deal with. ( His ex wife left him bc of HD) I told him I wasn;t going anywhere and that I would be by his side no matter what. And I intend to do so. I just have so many questions..and everytime I read more about HD, the more scared I get. My bf doesn't talk about HD a lot. He will answer questions if I have them. But I don't like bringing it up.

Once I told my family he had HD, they keep asking me if I really want to be with him and if I know what I am getting myself into. Not very supportive at all. I am so glad I found this site!

Jacquie I hope you are getting the answers you need

Hollie

Hi Jacquie,

It's normal when faced with a disease that's new to you to ask questions about medication, cures, life expectancy, age of onset etc. But I don't think there are too many easy ways to paint a picture for you that truly explains what living with or living in an HD family involves. The advice to read back through lots of lots of different posts on this board is probably the only way you'll get an idea of what you're facing. And even then everyone has had different experiences. Of my HD relatives we have children under 10 who have developed HD and died in their teens. And we also have family members who had the disease very late in life, in their 80s, and who we only know had HD because their children developed it. I have two relatives who both developed HD symptoms in their early 40s. One lived to be 45. The other is still alive in her 60s. I have relatives who have coped amazingly with their HD spouses, parents and children. Then there are relations where the non-HD spouse committed suicide because they couldn't bear to see their HD spouse, children and grandchildren developing the disease. Unbearably sad. Unfortunately there are no absolute concrete rules about how this disease will progress or how any individual or family will cope when it does take hold.

HD is so much more than a physical disease too. I think that's the hard part to explain to people. Nobody thinks their loved one's personality will change. Nobody thinks that their loved one might do a whole heap of research about HD and then not take their medication when they finally need it. Nobody thinks that their loved one could ever threaten or become violent towards their family. And nobody thinks that after doing research about HD that when the symptoms finally start to show up that their loved one will be in denial about having HD. Sometimes it goes as expected, but many times it goes down a path least planned for.

You've only been dating for two months. It's a really really short time. You might find after another month that you want to end the relationship and it will have nothing to do with HD. Or love might blossom and you decide to give it a go. But please take the advice others have given and read as many personal accounts here as possible. All the stories are relevant, all the stories involve HD. Some are tragic and some are uplifting. Try to take in all of them before you decide where you want your relationship to go.

I met my husband when I was 21. He told me he was gene positive a few weeks into our relationship. He said he wanted to be honest with me and to give me a chance to walk away if I wanted to. My husband doesn't know his cag repeats but did know that it would be early onset. Three years into our relationship we became husband and wife. I began noticing things even before we were married. First it was poor balance and a hard time concentrating. It affected his work and he was often unemployed. The first few years of our marriage and even part of our dating life he was unemployed. By the time I was 26 I was the sole supporter in our relationship. My life was quite different then my friends who were the same age. They were planning and worrying about starting families, who was going to pick up which child from a sporting event. I was balancing work, a huge financial responsibility of caring for my husband but also his medical needs, and dealing with every curve ball the disease threw my way. The most challenging symptom that required a lot of patience and understanding and tons of work was the behavioural changes. The sweetest man I knew became the exact opposite. He became angry and explosive. He poor judgement and quickly progressed to where it wasn't safe for him to be left alone. It was a huge commitment. My life was changed forever.

There were times (even years) that were very hard but there was also some very great times as well. My husband is now in the more advanced stages and has been residing in a nursing home for a year now. I see him daily and sometimes bring him home for a night. I miss the man he was. I see less and less of "him" and more and more of this disease. Knowing what I know now and if I had a chance to redo it, would I choose to go through all of this again. YES, I know I would.
There were lots of hard times, lots of tears, lots of sadness but there still was love. We had a very short time together but I loved that time.

Life is so uncertain. Life has proven that to me. I knew my husbands fate and consciously made the choice to live that life with him. But sometimes we don't know the fate of a loved one and we get dealt a rough hand as well. I've lost so many loved ones in the last few years. Some who took me by complete surprise. I'm glad I let myself choose to love my husband because I can't imagine my life without that kind of love.

Lisa,
Your story is beautiful and inspiring. I feel like I am looking in a mirror. Good luck with the upcoming years. Try to find something each day to enjoy with him.

Patty