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.