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Edited 1 time(s). Last edit at 05/03/2016 10:12PM by Kat343.

Hi Kirsten.

My first question for you is to ask if your boyfriend is already symptomatic and diagnosed with HD, or is he gene-positive, or at risk. Each of these have monumentally different meanings as far as time you will have together and what that time will be like.

I hope that you have your boyfriend's support in seeking others' input regarding HD. He may have difficulty talking about it because of how it affected his family life when growing up, making it difficult to talk about. He may not want to talk about it because he is afraid of your reaction. It is good that you are seeking more information, but I wouldn't do it behind his back.

You can seek answers here. This is a great forum with many helpful people. You may want to contact a local HDSA chapter to put you in touch with other families affected by HD. You may want to find a support group or fundraiser. I find that the people who participate generally have the more positive outlook for living with HD rather than waiting to die from it.

Talk to different people. Every case of HD is different. Some people are more affected physically, some more mentally and cognitively. Some have terribly aggressive behaviors, some quite mild. It is impossible to predict what your boyfriend's experience will be. You can't even look at other members of his family as a guideline, it varies from one brain to another.

I can tell you from personal experience that you can still have a wonderful love story and make happy memories with your boyfriend. I can tell you it would likely be a very different story than those of your friends and relatives. You may promise to always love him, but you may not always like his behaviors. You may not always be able to live with him. You may or may not feel up to the challenge of being his caregiver, but you will likely always love him if you are able to look past what the disease is doing to him and see the person inside.

I stay at home to care for my husband now. We have been together for 14 years and he has been symptomatic for atleast the last 8 of them. We did not know what HD was prior to his diagnosis because he was adopted. He just gradually started to change into someone I didn't feel I knew. We have been through hell and back. I never stopped loving him, but because he was very aggressive, we lived seperately for 2 years. He was at a state hospital then group home, then ultimately stabilized, so we brought him home.

The consideration of having children will need to be considered more seriously than in some of your friend's relationships. There are ways to guarantee the children won't inherit the gene, but this involves great expense, time, IVF, and may or may not result in children. You can take your chances and hope that time and luck are on your side as well. There is wonderful research going on right now, and we hope that there will be a REAL solution before my children come of age of onset. Living with two children at risk rarely escapes my thoughts, but had I known, I don't know if I would have done any differently. I wouldn't have these wonderful people in my life if I had made any choice.

I hope that is not too much info for your first response. Feel free to pm me or email me any time.
Patty

Kirsten Ann,

Patty has some great advice. If he is at risk, but has not tested, he probably should be tested if he has any thoughts of making the Marine Corps a career. If he has tested and is gene positive, but asymptomatic (and still wants to stay a Marine), he should tell his Commanding Officer (CO) and request official medical and legal advice about his career. Same thing if he is showing symptoms that people may or may not have noticed.

If he doesn't trust his CO with this information, he can always ask to see a doctor and a lawyer for unspecified reasons.

Will
SME (Subject Matter Expert)
Gene Positive and Retired Marine

I agree with Patty - she gave you very good advice. I am in the same shoes she is so to speak.
My husband of 45 years has HD. Neither of us knew of HD when we married. I would still do the same thing and marry him again even
if I knew. We have had a good life and been blessed by much. We choose to live life with adjustments as necessary but not dwell on HD.
He is on some medications that have made a big difference.
We have two wonderful children and awesome grandchildren - these are the most wonderful blessings and I can't imagine the world without
them.
Yes, I pray daily for a cure for HD and I pray our at risk children do not have the gene but I wouldn't change what I did. These wonderful
people wouldn't be here and the world is better because of all of them.
A lot of information here and a lot of thinking for you to do - whatever decision you make has to be the right one for you and whichever one
it is will be the right one.

Thank you



Edited 2 time(s). Last edit at 05/03/2016 10:12PM by Kat343.

I think it is okay to educate yourself and get an idea of what may be in store. With any luck, he will have a later than expected onset, and you will have many many healthy years together. If I were in your place, I would let him drive that boat for now. Enjoy your budding relationship and live life to the fullest. Read up on some of the healthy lifestyle habits that can ease symptom onset (the HD triangle: nutrition, exercise and spirit.)

It sounds like you are committed to him no matter what, so enjoy your HD-free time now. You never know, he may want to come around in the future and reach out to the HD community. If he wants to keep it hidden from the MArine Corps, he probably won't be heading out to any Team Hope walks any time soon. Follow his lead.

Take good care,
Patty

One more suggestion. You might tell him that you ran across a retired Marine who has the HD gene and is still asymptomatic at age 67 - me. Here's a piece about me from the Marine Corps Marathon. [www.marinemarathon.com] I guess the 4 of us are sort of legendary.

I would be glad to correspond with him by e-mail and tell him what I believe has worked for me and tell him having the HD gene is not a death sentence.

Will Brown
Raleigh, NC
geezerjock100@yahoo.com

The



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Edited 1 time(s). Last edit at 05/03/2016 10:14PM by Kat343.

Kirsten...HI welcome to this site. I am 53 and my HD hubby is almost 55, he was diagnosed 3 years ago almost but the docs think he has shown symptoms for about 10 years now. We have been married now 13 years so to look back I have only known the HD person I married.
I want to tell you RUN... run as fast as you can but on the other hand I was able to run and because I love him and wouldn't want someone who loved me to run away, I have stayed for the long haul.
I want to also say when people tell you it is not easy, that they are being polite, with my hubby it is torment for both of us, the tears and fights and the unexpected insults are just a part of his HD world. As his only caregiver I am very alone, all my so called friends who do not understand HD have flown the coop or tell me to leave him for my own sanity
I truly believe if I did not have Jesus I would have fallen apart already.
Mt hubby was in the Army and was injured so he is a 100% disabled vet, the VA told me the HD is not part of his disability because it did not happen because of his service in the Army so it is not covered...yet the VA pays for his HD meds and such. So about him telling the Marine Corp. wow what a dilema. I would say that he could get hurt because 10 years before my hubby was diagnosed I remember how bad of a driver he was and how when we went out to eat he would always knock something over, I don't know what your boyfriend does in the Marines but he needs to be careful, he may be" just off a bit" even though he does not shown signs yet.
Let me tell you another thing...get yourself educated on HD !!! If you want to tell him go ahead and if you just want to keep it to yourself for now do that. If I hadn't gotten educated I would have had a lot more pain and suffering wondering why someone I love acts the way he does.

God Bless you and whatever you choose to do !! Marlyssa

I am going to be out of e-mail touch until next Tuesday. I'll be glad to "talk" then.

Will

You're our hero Will!!! I just wanted to say that today!

Maryssa,



Edited 1 time(s). Last edit at 05/03/2016 10:14PM by Kat343.

Hey kristen, im 25 and have HD and i am experiencing symptoms currently. I was in Army for 8 years couldn't re enlist bc of the HD. My child's father is pretty much walking in your shoes as far as not sure on how to help but wants to be there for me as much as possible. So i'm on the other side of it, the side your bf is on. I'd like someone to chat to about it also. Please email (jbaun89@yahoo.com) or contact me on Facebook my name is Jillian Baun. Maybe we can help each other. =)

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Edited 1 time(s). Last edit at 01/01/2018 09:43PM by Kat343.