My son, Ben, now 35 years old, is likely in the later midstage of Huntington’s disease. Had I known earlier what I now know, it would have changed how I handled him when he was young, and I would have approached his discipline differently, been more patient and understanding. This is our experience.
My ex-spouse was diagnosed with HD shortly after he remarried, when our kids were still very young. He and all four of his siblings inherited HD from his mother. Once my ex was diagnosed, we were all brought into a physician’s office so that they could tell both our children and answer any questions they might have. They were so young, they didn’t really understand what all was going on, but from that point forward, my kids knew that they were at risk for this disease.
Saying that, none of us really realized what HD was and how it would affect our lives. I was barely holding my head above water being a single mom, working full-time, trying to take care of the kids, and I did no homework on HD at that time. It wasn’t something I had to deal with at that moment, as there was so much else going on. Looking back, I wish I had done more research.
Although I didn’t know it at the time, my son had what I now consider to be HD symptoms from a very young age, but not physical symptoms as a typical jHD diagnoses would have. His were more behavioral issues and learning issues.
This is not to say his childhood was all bad…he was a very happy child. He loved everyone, was very social, would talk to total stranger (despite my warnings), and took great care of his sister when they were little. He was always very caring and loving. Even with his learning and behavioral struggles as outlined below, he was still motivated, energetic and very intelligent. I try to never lose sight of who he is at his core as a person.
Surprising Feedback
In second grade, at our first parent-teacher conference, I was told by Ben’s teacher, in front of other parents and very loudly, that he “was the worst student she ever had.” I went straight to the principal’s office to report this bad behavior by a teacher and request that he be moved, but they refused to move him. The teacher continued to be mean to him the entire year. Other parents told me that she found a boy to pick on each year, so I thought this triggered the start of his behavioral issues.
Later that year he was diagnosed with ADD, however the treatments for that seemed to do nothing for him, and actually made him worse. A couple years later he was diagnosed with dyslexia. I got him a tutor that specialized in dyslexia, but it didn’t seem to do much either. He had an IEP, but again, it was not much help.
Ben was very well-behaved most of the time when in my presence, but I came to learn that wasn’t the case outside of my presence. One after another, his behaviors were isolating him from friends and various groups. One time he had gone to a friend’s birthday party, but was kicked out of their house and told never to return. I tried communicating with the parents to find out what happened, but they refused to talk to me.
I kept trying to get him with male role models, starting with Boy Scouts, but after a year or so, he was kicked out of the troop. Again, they wouldn’t tell me what he had done, because they “had dealt with it,” but he wasn’t allowed back.
How could I raise him if I didn’t know what was going on? These things continued happening as he grew up. By his teen years he was also kicked out of two church youth groups and Navy Sea Cadets, a Navy youth development group. They and one of the church youth groups both told me he was “inappropriate” with female members. This was hard to hear, and I had no idea how to handle that.
Punishment didn’t seem to deter him or affect him in any way at all. I took away so much stuff that at one point the only things in his room were his bed and clothes…and he didn’t seem to care. He never tried to “earn” anything back. I think the punishments hurt me worse than him.
More Serious Consequences
As he grew, impulsively became a big issue. He was caught stealing things from stores on a couple of occasions, apparently for no reason. He didn’t need these things, they were just impulsive acts. He also started to take things from my house and either gave them away or “sold” them. As he got older, he had begun self-medicating with alcohol, cigarettes and marijuana.
Ben was always motivated to have a job and was, I believed, a hard worker. He had started mowing lawns as a young boy and helping neighbors. But as he got older and obtained employment, he ended up fired from every job he ever held — working at Kroger, an apple orchard, McDonalds, the local bakery and even a farm.
When he was of age, Ben enlisted in the Army. He got married. I thought things were finally turning around for him. He made rank up to an E5, but then lost it all within a short period of time. Upon returning from Afghanistan, he was released from the Army (a year early), and divorced shortly thereafter.
Once home, he was getting into a lot trouble. He had angry outbursts, he punched walls, and everything and nothing triggered him. I was walking on eggshells. I thought it was PTSD (and it was, but also much more), but I couldn’t figure out how to help him, as he refused to go to the VA. He continued self-medicating with alcohol and marijuana. I later found out he also had tried many other, harder drugs while in the service. He was getting in fights. I would get calls that he was in jail or the hospital, for many different issues. Trust me, once in the legal system, it is very hard to get out of it!
Eventually, someone from the VA visited him in jail. They then figured out that he had auditory and visual hallucinations (schizophrenia). I should have known, as at one point he told me he could hear my voice while he was in Afghanistan, but it didn’t click. I thought he meant he could hear my voice in his head, telling him to be safe, keep his head down, etc. Sometimes I wonder how long he had been hearing the voices.
By the time he returned home, he was in such a state of psychosis he was unable to work at all. He even had a difficult time filling out applications and answering test questions. We went to file for help with a work opportunity program, which was required by the VA, and the assistant blasted me for reading the questions to him and helping him fill out the answers, calling him a “mama’s boy.” Ben was so embarrassed that he didn’t even want to continue, while this mama wanted to have a word with her!
At this time the VA tested him for HD, unbeknownst to me. I found out when I couldn’t get life insurance for him and called the VA to ask what I was doing wrong on the application. They then called us in and told us about his diagnosis. Ben just said, “I knew it” and had hardly any reaction. I just completely broke down. His HD symptoms were still not physical at that time.
Looking back, and knowing what I know now, I am sure a lot of these issues were due to HD. In some ways I wish I had known it was HD way back when he was a child, because maybe his entire childhood would not have been in punishment, and maybe others would have been more understanding also, instead of just thinking his behavior was due to “bad parenting”.
Knowledge Is Power
The first action his doctors and I took once he was diagnosed was to treat his psychosis. It took a couple of years and a lot of different medicine concoctions before we found one that works for him. It has side effects, but they are easier to deal with than the psychosis.
Eventually, Ben did begin having some pretty bad chorea, but it seemed to come and go. I noticed it would definitely get worse when his caffeine intake was high (coffee, monster drinks, etc.).
Once stable on his psychosis meds, he was able to get clean and sober. He worked really hard to get off of the alcohol and marijuana. I know that marijuana helps some HD patients, particularly with pain, but for Ben, it made his hallucinations worse, so we had to get that stopped. This was a struggle, but he is so strong and such a fighter. I am so proud of him. Eventually his chorea subsided, and we are told by his neurologist that the antipsychotics he is on helps with that, and that his chorea would be much worse without them.
He not only became non-violent, but he is so very loving and caring to all. To every person he passes on the street or in a hall, he says “Have a good day.” He gives hugs to everyone who asks for one, and some who don’t! His understanding and patience with others is amazing…so much better than my own. It has been an amazing transformation. This is who he is to his core.
Eventually I found a support group for caregivers, which started out as a Yahoo support group, and then morphed into a Zoom support group with Help4HD International. I found people who could educate me about this disease, answer my questions, help with practical issues, and who understood what I was going through. It was literally a life-saver. This group is my lifeline.
It is very hard to get Ben out of the house these days. He “wants” to do things in his head, but he is always “too tired.” Is this a symptom of the disease, a side effect of the meds, or a combination of the two? I don’t know, but we deal with it the best we can.
Unfortunately, HD is a very isolating disease. Not only does Ben not want to go out of the house, but people stop coming over also. You lose a lot of support. Friends and family fall away, especially during the part of his life before he had proper medication. It becomes a very lonely journey without support.
I am so thankful for my support group and Help4HD.
We are also very thankful for the good care the VA takes of him. Sometimes it was a fight to get what he needed, but now that we have it, they have been amazing and wonderful. We are blessed to have this care. I really don’t know how we would survive without it.
Financial Worries Persist
I was working full-time as we were going through most of this, from his diagnosis in 2012. As my son’s condition deteriorates, he needs more one-on-one help at home. I was able to go part-time in August of 2023. After I finally got approved as his full-time caregiver, with a stipend for being so, I retired from my job completely as of January. I did take a pay cut in order to do this, and income is very limited, but it is what we both needed. The stresses of working full-time, taking care of a son who is declining, and the household stuff was just becoming too much for me to deal with alone. I wish I had been able to get approval for this much earlier.
Ben doesn’t have life insurance and is unable to get any. I would say to the insurance companies, please cover our loved ones. We are already struggling financially with every aspect of this disease and getting proper care for our loved ones. We are already dealing with a huge burden financially, from medical issues, medications, equipment, to not being able to work as we care for our loved ones. We just want to know that we can give our loved ones an appropriate burial and service when the time comes.
What I Have Learned
If it is your child who is exhibiting behavioral issues, I would suggest doing the opposite of what I did, and learn as much as you can about HD and jHD symptoms. It is nearly impossible to get a child tested for HD unless they are showing very obvious jHD symptoms (or are over the age of 18). If they are not, and only showing the behavioral symptoms, as my son was, understand it may be HD causing these symptoms, and I would encourage you to be very patient with them, do your best, get involved in a support group, talk to physicians, to see if there is treatment available for the specific symptoms you are seeing.
Although there is no current cure or even treatment for HD, the good news is that there are a lot of drugs available to treat some of the symptoms. So, if your adult child or other HD-positive loved one is having behavioral issues, anger, depression, psychosis, etc., there are medications that can help with those. I would highly encourage you to try to find someone to treat those symptoms.
I wish I had known earlier, but I don’t know what I would have been able to do other than treat him better than I did, be more patient and spread the word to his teachers and role models so they would be more understanding and compassionate also.
Finally, if your loved one is old enough to test and willing to do so, there are so many studies available that they may be able to participate in. Some are coming in with excellent results for treatment and I would recommend anyone who is able to, to participate. Unfortunately, due to the antipsychotics, Ben is unable to participate in those kind of studies at this time. If you are able to get in early on the research, you may have first priority in receiving treatment if/when it is approved.
I also highly recommend connecting with a support group. There are some support groups that meet in person, some that meet via Zoom, and some that are solely Facebook support groups. Some are for caregivers, some for people at risk, some for those in the throes of the disease and some for those who are premanifest. These groups can help answer your questions, keep you updated on the latest research and give practical advice. You will find more understanding here than anywhere else.I wish more neurologists, psychiatrists, physicians learned more about the disease. We find so many professionals that have had one day of exposure to HD in their classrooms, and they don’t even recognize it when they see it, especially since every HD patient will have different symptoms. They need to know that HD symptoms (cognitive, behavioral, mental health) usually begin way before physical symptoms of chorea appear, and some people never even show the chorea. They need to know that early treatment results in a better quality of life, that diagnosis needs to happen earlier so that treatment can be started earlier.