Hi everyone. This site has helped me through the last month and I have thought fondly of you all of how strong you are. Sadly we found out Thursday that my boyfriend of 4 months has inherited the HD gene. His count was 44, the doctor says it is lower than his fathers although we are unsure what his fathers was. What I wanted to know was whether there is an average age of things starting to happen. He believes he has already had symptoms but I put this down to drink. He is only 28 and I think 44 is quite low for it all to be starting now.
I want to stay with him, I have thought long and hard about it and I know we can be happy together, even when HD takes over, I know I can handle what comes as Im doing a psychology degree and I spend time with his father. I have looked really indepth at what I should expect and know that the time we have together before hand will be amazing and happy and I care enough about him that we can cope with whatever comes our way in the future. The thing is, he is obviously down in the dumps right now but he is already pushing me away. His Aunt who came to the results with us said 'If you're going to leave him leave him now', and then about an hour later he said 'I know you're going to leave me'. It didnt enter my head to leave him as I've had the chance before now as he has told me from the beginning it was a possibility. I just don't know what to do. When he was crying last night I was comforting him as best I could, at first he was pushing me away, wouldn't hug or touch me and pushed me off when I tried touching and hugging him. After about 5 more beers he loosened up, really open his heart and finally admitted how affected he is by it all and eventually allowed me to hug him and he hugged me back.
I'm sorry about the long message, I guess my questions are:
1. With his gene count at 44, do we know a rough age of onset?
2. Will he keep trying to push me away, and if he does do I stay or go?
Any help or advice would be of great help to me. Thank you again for the help already given from googling about HD. This site is amazing and so are the people who write and comment. Much love x

So sorry for what you and your boyfriend are going through. Here is a website with a chart that easily displays a likelihood of onset age corresponding to CAG numbers. Please note that it says it is the age range in which 50% of HD persons will begin seeing symptoms. Half of people with HD defy those ages. Earlier or later. Maybe you could attempt to inspire your boyfriend to "fight" by lifestyle choices? Check out Will's supplement program, eat brain foods, exercise, etc... I truly beleive that the damage from HD can be put at bay for a time period as a result of a truly healthy diet. Coconut oil is amazing for brain health please do some research on it. You can buy it in its pure form at Meijers. Blueberries are good and other things.

I have also read that it takes at least one year to adjust to HD test results (positive or negative). Your boyfriend has a greiving process to go through. If you are set to stay with him: be prepared for this rollercoaster ride just adjusting to his fate. That alone could cause relationship issues even if he is not symptomatic.

Lastly, when I was convinced I was HD positive I pushed some away that probably would have stayed. But as the person with HD as a possibility, I wasn't gonna put anyone through that. So I ended it. So if you are gonna stay awesome, but understand for a relationship to get through a diagnosis is a major obstacle. Escpecially a relationship in its beginning. Start with showing him the fun side of life still exists, enjoy it. Praying for you and your boyfriend.

CAG and Age Chart

Hi, it is so sad to think about what is happening here. He has just received his diagnose and is still coming to learn to accept his fate. He can do much with his life and it can be ok for a while. However there is no changing whats ahead at least for now. So please forgive me if I say that I am going to be a devils advocate.
You are both still so young and there are no guarantees in any relationship. There are so many broken marriages which have no health issues. So it is a double whammy for you and it is almost impossible to know what will happen and the complications which will arise. Loving him may not be enough and you must be realistic. The only advise I can give you is to take it one day at a time and understand that that is how you will be living your life. It is difficult to plan ahead you have to live in the moment all the time.
He needs a strong support system and people who can encourage and nurse him and also provide him with financial and social support . As the years go by friends will come and go as some will not be able to deal with his overt problems. Even best friends shy away. However people who are caring come from nowhere and do provide support. Many people are able to do this but at some point even with all the help, he may need to be in a nursing home. I have been visiting a family member for ten years in a nursing home. It will not get better. You have to understand that. If you are a person who could have been a good nurse then your chance of going thru this improves.
There is no way to guarantee success or committment to this over the long haul but you can commit a day at a time and it can be a rewarding life but honestly very different from most of your friends.

Hi. Thank you both for your replies. I understand that it will take a while to getting used to. I think I thought too lightly of it. I will stand by him and take each day as it comes but I don't think I'm strong enough to keep fighting if he's pushing away so much.
Both of you responses has helped me and I will look deeper into the situation. Such a hard thing to deal with especially as I want to finish uni and have an amzing career.
Today he told me he didnt love me, that was hard to hear when I've been by his side every day through this and other issues...I'm just thinking he either means it or it's him pushing me away. I admire anyone who has come through all this. Such amazing people you all truelly are. Much love. x

If you stay...work as hard as you can, live frugal and save. Then be prepared to give up your profession, and spend all your savings. If you make it through, maybe you can get assistance for your final years...but that is just my opinion (actually it is my life)



Edited 1 time(s). Last edit at 03/03/2013 07:36PM by JFB.

Hi,

I was 21 when I met my husband and he was 28. We had been dating for only a few weeks when he said that he needed to talk to me. That night changed my life. It was the night that he told me that he had huntington's. He had been tested a few years before and knew that he had the gene. He too tried to push me away and would do so numerous times throughout our relationship. My best friend growing up had a debilitating disease that progressed until it took her life a few years ago. My profession is working with children who have varying abilities and needs. My passion was working with children with behavioural problems, autism and medical needs. His news didn't scare me away but made me realize that I liked him and was willing to see where things led.

As I do in my profession, if I don't have the knowledge, I gain it. I made the effort to learn about Huntington's. Shortly after knowing him I began to realize that there were some symptoms that I was reading about that I had noticed in him. At first, I thought I was searching and wow do I need to stop this. My husband encouraged me to come to his doctor's appointments early on. I remember hearing the doctor say that there were some things he noticed but couldn't say with certainty that it was definitely Huntington symptoms yet.

We continued on in our relationship and 3 years later we decided to marry. At this point I was certain that I was seeing symptoms. Work had been progressively getting harder and he had bounced around a bit. My suspicions were confirmed that year. Yes, the neurologist said with certainty this time that there were symptoms. We continued to live life and tried to cherish each moment.

Things seemed to be progressing a lot faster than I expected them to. We were definitely riding this huntington's roller coaster and it felt like it was speeding out of control. Work continued to get harder and he went on disability leaving me the sole supporter. I think I was 27. The years between that were challenging. He couldn't hold a job and spent a lot of time unemployed.

Unfortunately that wasn't all that was going on. His balance and speech became effected, he had his drivers licence revoked etc etc. There were so many challenges thrown our way. We never finished mourning one loss before another one was thrown our way.

This disease challenged us and our love for each other. Behaviours - they came early and came fierce. The sweet man I fell in love with became a man who stole, lied, became compulsive, aggressive, explosive etc. My friends were having babies, partying and I was organizing doctor appointments, managing medications, keeping my husband from being arrested etc.

My husband is now 43 and lives in a personal care home. A decision that was very hard but seemed unavoidable. I can't afford not to work and he can't be alone. We had lost homecare more than once due to behaviours and other reasons. He has lived there for 2 1/2 years. I see him often (6 days a week). I continue to slowly watch him disappear.

There continues to be challenging times and it still feels like I'm hit with too many challenges all at the same time. I continue to work full time and have only missed a few days in the last 16 years. One because he was moving into the personal care home, one because we were at the emergency room.

This disease has challenged me but I'm still standing, still loving. Is this roller coaster ride fun? - not always. Does it cause pain? - Absolutely. It's long and challenging. Has it's ups and downs, I plan to stay on it till the end.

Would I do it all over? Yes. I probably would. The good times were great and that is what I use to keep me going down this path that I choose to live.

It's a hard path but it's not impossible. Hopefully you have a friend or family member to lean on for support and guidance.

Best wishes,

Lisa

Lisa,

That was a very touching post. He has been lucky to have you.

Will

Lisa, I loved reading your post. I've seen your commitment in other post and that's what it boils down to in most cases. We as pHD's worry about it as well. Thank you.

Mike

Thank you all for your input. It's been one week since we discovered the news and things are ok in the way that he is not reacting badly or negatively so that is very good. He is looking positively towards the future...which includes me when he talks about it. However, I feel we have become very distant. We don't hug kiss or say nice things (like I miss you, love you etc). this has literally been since Saturday. I will stand by him as much as I can but this is extremely hard, I have 2 young children to think of.
Lisa your post has gave me hope and admiration. You truely are an amazing person, you were so young and took all that on. I'd love to be here in a few years giving advice and guidance to others as you have done for me. Your husband is a very lucky man. Im so glad you were able to have a good few years together, this gives me hope for mine and Mr's future. Just very tough to see through the negative right now!
Thank you all again guys, you truelly are amazing people. Much love x