What has your family endured due to a lack of awareness about HD? The community responds.
• We planned a friend trip to Vegas after my husband’s diagnosis. We all sat down at a poker table to play. The whole table was just our friend group and the dealer. Matt would take cards and hold them when it didn’t make the most sense. We didn’t care. We all knew this. The dealer was getting so worked up and started scolding him repeatedly. We left the table and went to the management. It ruined the time together, but we didn’t let her ruin the trip.
• One time, we were in a local restaurant that we went to often. It has high-back wooden benches. Ben’s head kept hitting the back, along with some other movement. An elderly lady in the booth behind kept standing in her seat to turn around and give us dirty looks. Ben didn’t see her, and I didn’t want to embarrass him by saying anything at that moment. As we were leaving, she looked at us in disgust again. I told the kids to go to the car, and I went back in to tell her he wasn’t doing it on purpose and that he had a movement disorder.
• My husband was pushing a shopping cart in Walmart with our little girl, who was about nine months old at the time. These women started whispering loudly so we could hear, saying they couldn’t believe I let that guy who was “obviously very drunk” push my daughter in a cart, and hopefully, I didn’t let him drive too…. Their children were running up and down the aisles like heathens. My husband didn’t want me to, but I turned around and said, at least my kid is well-behaved, and I know where she is… oh and also, my husband is sick with a terminal neurodegenerative disease called HD and not drunk at all.
They were dumbfounded.
• My husband was forced to take a breathalyzer the day before his diagnosis was received. We were driving home from our last hurrah dinner in case the results were bad. We had a taillight out. The cop pulled my husband over, told us about the taillight, asked if he had been drinking (he hadn’t), and then made him take a breathalyzer because “his eyes looked drunk” to the officer. He also made him do the sobriety field test, which he did poorly. We knew that night that, when we went to the doctor the next day, we would hear a positive diagnosis…. We had tried to ignore the fear, but unfortunately, that officer ruined our last hours of the before-diagnosis period. He did apologize when the breathalyzer was completely 0. But he didn’t know how cruel it had been.
• Before Charley was diagnosed (one of the reasons he got tested), we were at a movie theater, one of the really emotional/inspirational type movies, and some individual called the cops on us because he was "moving around so much they thought he was on drugs". The officer pulled us aside after the movie let out and questioned us for like 30 minutes or more, and made us show our IDs. I assured him we didn't do that kind of thing, but he still didn't get it. Charley didn't really have many movement-type issues at that point that would point to HD...more like ADHD, really just always on the move. We did know HD was a possibility, though, since we had just been informed that his mom had passed away from it, and his older sister had it. So basically, he got tested, so he had proof if someone ever asked or was rude about him moving all the time. He had problems at jobs before that as well with remembering things or not using good judgment. Nothing really so far after officially being diagnosed, though, but we have a backup just in case.
• There is time(s) Ben has gone for a walk and gotten the police called on him (several times), and his picture was posted on Facebook as a dangerous person (twice).
• A“ commuter” post about someone else, and bens neighbor's dad made a comment that it was Ben and told where he lived and added to the hysteria by saying he was messed up from the war and had PTSD really bad and to stay away from him because he’s so dangerous.
At least his other neighbors have come and talked to him and met him and try to look out for him.
• I am frustrated with the front desk people at the doctor's office, who you have to speak to make an appointment. I called and had to leave a message to make an appointment with her Neurologist (I have permission to do this). They didn’t answer the phone. I asked for an appointment soon, possibly in the afternoon. I received a call back that went to my voicemail because I was at work and couldn’t answer. The message was, “Dr F is not taking any new patients right now, and we can suggest another Dr.” My daughter has been going to her Dr for several years! They didn’t even look! This is at a Center of Excellence hospital in Boston! So frustrating! They don’t listen and still blame everything on Covid. We waste so much time on the phone trying to get help. I could write a book. Same difficulties with my husband before he passed. They need educated front staff that understand and know about this disease. Not give families a hard time. When we ask for an afternoon appointment, it is because the patient is not good in the morning, and it is very hard to get there on time with traffic. I will be speaking to my daughter’s Dr when we have her appointment. May also write an email to the President of the hospital. There are so many other things with the healthcare system that are very frustrating to deal with and unnecessary.
• I am always looking for ways to share info on HD. When I tell people, I work on a unit specialized for residents with HD and families...I always explain briefly what it is.
• My daughter was nearly strip-searched at the airport when she was probably 12/13 because her hip moved a little when she was going through the body scanner. She was maybe 70 lbs and wearing a t-shirt and leggings…she couldn’t have been hiding something on her body if she wanted to. We explained that she had JHD and they wouldn’t give us the time of day.
Now I let security know right up front that she will go through the metal detector instead due to JHD. So far, so good.
• When my dad was in the hospital, the staff kept trying to blame his condition on his HD. I had to constantly tell them it was not his HD and to keep looking for the cause. He was in the hospital for eight weeks with something unrelated to HD. During that time, the staff kept making notes In his file saying he was nonverbal. But they just never gave him twenty seconds to spit out his answer.
• My husband has it. It's a life-altering disease. We are held hostage by it. I have no help, no resources. I have no idea what to do with him when he can't get out of bed one morning. He barely speaks. He coughs. I get pt and speech therapy when Medicare permits, but it's a hopeless disease. He's oblivious to day-to-day life....no cure, no hope, no help. We both feel like, what's the point of getting up in the morning ....
• Yes, caregiver days are not easy. I'm sorry you also have it. I hope you have help to navigate your daily activities.
• My mom was “arrested” because they thought she was drinking and drinking 😢
• My brother-in-law was pulled over but not arrested.
• I have so many stories about how people treated my husband horribly. The first story that I thought of was when my husband and children went on a cruise. Mike had horrible chorea that always seemed to draw attention everywhere we went. It was late, and we decided to go grab ice cream with the kids, the one thing that was 24 hours before we headed to bed. We had to walk through a busy area. I picked up a security guard watching my husband. He came up to us in front of many people and told my husband he was embarrassed for being so drunk in front of our children that he needed to head back to his cabin immediately. I told him he had Huntington’s disease and hadn’t consumed any alcohol, OF COURSE, he had no clue what HD was. He acted like I was making something up. He even went as far as grabbing my husband’s arm to lead him out of the area. I, of course, flipped out and ended up taking the situation to guest services. It was horrible for me and terrible for my children to have to watch. They were also trying to protect their dad, but most of all, it was an experience I wish my husband never had to go through. Unfortunately, that is one story of so many. We need more awareness so that when we say “Huntington’s disease,” people have a greater understanding than they do when you say ALS, Parkinson’s disease, Alzheimer’s, or cancer. People typically show empathy, something we don’t often get in our HD community.