HD Awareness Month 2023, Some Patient/Family Response.
What do you wish healthcare workers were more mindful of with HD patients?
· I wish they were educated about HD, period! They don't teach that in the medical field. They mention the name but don't train them to understand the severity of the process. So much money and time are spent trying to find resources to help with the quality of life that is needed. One good case worker could make a tremendous difference in the financial burden as well as the burden on the families affected by this. I can say this because my son died last year at the age of 40 and it was because no one could understand what was truly needed to help. Praying for Awareness and a CURE!
· When asking health questions, sometimes the patient isn't aware of a specific symptom they are displaying. That's why it is best to have a family member or a trusted friend go to appointments to help fill out those health questions.
· We wish doctors wouldn't be so fast to push meds and educate on more natural methods to relieve symptoms first before trying a bunch of pills. We had a PCP doc get mad at us because we didn't want to take expensive pills until they were absolutely necessary for safety or sanity. We would rather do or at least try natural, less expensive treatments first.
· I find it shocking that even neurologists don't understand HD. We think of them as the brain and nervous system specialists, and yet we educate them on so many aspects of the disease. Even when I have told professionals to wait for the answer, they still don't give my son enough time to respond.
· The need for help with self-care for HD patients. To write scripts for this service explicitly. And I somehow help with insurance and Medicare/Medicaid. This is necessary for patients to receive care.
· We are all different. What works for one doesn’t always work for another.
How do you describe Huntington’s disease?
· HD is a hereditary, genetic disease that affects every part of your life, mind, and body, including cognitive abilities, behavioral, psychological, and physical issues, along with a host of other things. Not so short, and still not enough to describe it
· HD is a hereditary neurodegenerative disease that is fatal.
· I tell everyone more than one sentence. I will give them all the details, but I would say for short... "It is like having Parkinson, ALS, schizophrenia, and Alzheimer's. All in one. They're brain diseases."
· I add schizophrenia because I feel like it's similar too.
· My husband has a brain disease that deserves the same respect as all other brain diseases out there that you know of.
Why is HD awareness important to you?
· JHD awareness is important to me because I am tired of explaining to people what HD is and how my son inherited this gene. Hoping more people know of the disease, so when I say he has Huntington’s, people know of it and don’t say what is that??
· People don’t know about HD and need to know.
What have you had to reduce due to a lack of HD awareness?
· 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.
· My daughter's father was kicked out of an establishment because they thought he was extremely drunk, but it was just Huntington’s chorea. Even after trying to explain, they wouldn't let him back in. Another place asked people in his group, "wow, what drugs is he on?" Just assuming Instead of asking if he was okay.
· I have so many stories about how my husband was treated horribly by people. The first story that I thought of was when my husband and children went on a cruise. Mike had horrible chorea so that always seemed to draw attention to us 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 a lot of people and told my husband he was embarrassed for being so drunk in front of our children and 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 that 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 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.
· 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.
· 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. The elder lady in the booth behind kept standing in her seat to turn around and give us dirty looks. (Weird, you’d think it would be easier to get up and look around the corner). But Ben didn’t see her and I didn’t wasn’t 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.
· 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).
And then one time, there was a “ commuter” post about someone else, and bens neighbor's dad (who has never met Ben) 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 real 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 tried to look out for him.
· Before Charley was diagnosed (actually one of the reasons he got tested), we were at a movie 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 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.
· 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 also 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 and 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.
· I am frustrated with the front desk people 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 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. 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 daughters 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.
Help 4 HD International fights to be the last generation to live with Huntington’s disease and Juvenile Huntington’s disease like past generations have been forced to do. We will continue to stand by your side and fight for more awareness until the cure is found.