Hello Everyone,

It is very nice to find this forum and read other folks' experiences and know that we're not alone. My name is Adam and I live in Colorado. My wife is currently living at-risk, she has not yet been genetically tested. My mother-in-law is in the cusp of early/middle stages of HD, but she has not been tested, nor do we think testing is possible given her mental condition and inability to neurotypically interact with people. My mother-in-law's siblings (1 female, 2 male) all died in their 30s/40s from HD (from the symptoms, or accidents related to the symptoms). The gene descended thru my wife's maternal grandfather, who died in his 40s from what was then considered alcoholism related issues. There are no other relatives that we know of, there is only my wife and her mother remaining, and we have no children together. My mother-in-law has many of the HD symptoms: chorea, incontinence, insomnia, weight loss, mental processing and memory issues, diminishing awareness of socially acceptable behavior, to name a few.

My mother-in-law is on SSDI and lives alone, we help as we are able, and in the immediate future (3 months) we will be working to transition her to an assisted living facility to provide safety, companionship, and care, and also to relieve some burden from us, as she can be very difficult to work with. This transition will be extremely difficult, as she will not want to leave her home. It will make working with the bureaucracy of getting her on SSDI, Medicare, and Medicaid seem like a cakewalk.

I am thankful the HD gene will be removed from this descendant line, it is so very tragic and cruel. My wife's maternal grandmother survived her husband and 3 children, but rarely spoke of HD and due to discrimination before GINA she rationally urged those around her to not discuss it and keep it secret. After marrying, I asked more questions and learned about HD in the family line, and in discussion with my wife we attended the local HDSA support group in the past year, and became more involved and knowledgable. We contribute to HDSA and help the community where we can. If one day my wife decides to test, even in the event she is gene negative, we will remain involved as this affects our lives every day, and hers since she was born.

One aspect we've discussed often is testing. At times it feels that, testing or not, you live with HD as an at-risk person. So knowing your CAG number is definitely a heavy existential fact, but you never stop living with HD once it has come into your life, in the way it has with us. It is solely my wife's choice whether she tests, and I support her in whatever decision she makes. One could make the argument that she has a moral obligation to me, as I've chosen to share my live with her, and the test outcome is something we would then be able to integrate into our lives and plan around. However, I too could die at any time from any cause. Were a magic genie to appear and offer to bestow upon me the knowledge of the exact date, time, and cause of my death, do I have a moral obligation to accept that knowledge and share it with my wife so she can plan accordingly? What if I don't want that knowledge of my demise, but my wife does? These and other ideas circle around us, without a clear way to rationalize the choice to test or not, while daily we field multiple phone calls a day from my mother-in-law, with her asking us what can make her better.

I am thankful to our support group, and for the close feeling of community and compassion we have with them. I am thankful for my wife, and in awe of her courage, her ability to push that sisyphean boulder that is HD up the mental mountain, every day of her life. I am thankful that we do not to let HD define who we are, but rather to find the power in us to face the obstacles it creates in our path. I am thankful for you, all of you who have shared their story, for now we know we're not alone in our struggle.

Bless you all.

welcome Adam. Sort of sorry that you had to look for a forum on this subject. I am not the most elequent of writers. you will find this group very helpful as I have and do.

I dont really see a moral obligation to find out. Personally, I feel like just knowing it is in the family should be enough to understand what practical, financial planning you should be working towards. Things that everyone should be doing anyway, but put off because they are hard to talk about. Insurance is always a crap shoot, as is life in general. The only reason I would want to know is if I were considering having a baby, or if I began having medical issues with no other pathology... That said, I do not have Huntington's, so perhaps I would feel different if I were at risk. I am the caregiver to my husband of 22 years. He began having behavior and noticeable mood issues a couple of years ago and I wanted him to get tested, as it was affecting our relationship, I wanted to know if we were dealing with HD. Since his diagnosis, there have been ups and downs, but for the most part, with the help of medications our relationship is back on track. I am able to put aside a lot of anger and defensiveness, understanding that many conflicts are HD related and learning how to relate to him better. We also attend a local support group together, donate money, joined our local board affiliate, council with other families, raise funds, participate in research studies and drug trials. I have 3 at risk step sons and one at risk grand daughter, so we are building a trust fund for them to benefit them without disqualifying them for Medicaid and bankrupting their families should they need assistance. My husband has severe chorea and is on LTD from his job, so had we not gotten tested, it would have only been a matter of (short) time until the symptoms would have been so obvious anyway.
I wish you luck and much love and welcome you to the group

Welcome Adam.

You are already blessed with some great insight into the challenges of living in a family with HD. Your wife and mother-in-law are very lucky to have you in their lives. Never feel pressure from anyone to have your wife test or not test. That is a purely personal choice for the person at risk. Live your lives fully and make healthy choices.

Thanks everyone for the kind replies. We're taking it slow for now, caring for my mother-in-law, and possibly in 1+ years think about testing. As we're not having biological children together, there is time to slowly process all of this. We receive the nearly daily emails from HDSA with the "Faces of HD" and it is helpful to read other folks' struggles with the very same things.

Hey Adam.
I am back to the forum that I left for no other reason than just getting a grip on my wife's HD. She is 50 withthe onset starting about 6 years ago and confirmed HD last year. Still the begining stages as she drives and takes care of the household with my 3 daughtes, 16, 13 and 8. Just took them out to get shoes for 8th grade graduations so I consider myself lucky right now. She has a lot of balance and movement issues and some mood swings but all is good.

Just prepare for the future. Have a bucket list, I bought a small boat. Plan your financial situation. I can't increase life insurance but I can plan a new bathroom to better able to accomidate her future needs. My girls will need or want to be tested. I want them to but it is there choice. Sorry I am rambling But I wish you luck and I empithise with what you and your wife have been through. I too am starting to be an advocate and donate money.

My issue is wife is in denial so all that I do this is in a vacumn.

Peace and Good Luck. Contact me if you like. I am trying to stay positive for my family and friends