A Family Story
Katie Jackson: Hi, everyone. And welcome back to help for HDTV. This show is part of a series that we have that we are talking about symptoms associated with Huntington's disease and how they impact families. So we are doing personal family stories about certain symptoms and what they have done to help their loved one.
Today we have Nikki on with us.
Let's start by talking about how HD impacts your life, and what were the first signs you saw?
Nikki: First signs when I first met Darnell almost 20 years ago, it was super slight. Like you didn't even notice and didn't know that it was Chorea. When I met him, I had no idea what Huntington's disease was. I thought maybe his movements could be a hand tremor because you wouldn't even really notice that. And then, through the years, we saw it. For instance, he would pick something up or grab something, and kind of his hand would move, and he would drop it.
Not knowing Huntington's and what it was until all the diagnoses with his older daughter, and I already had my daughter. So it was about five years ago when all of this kind of started coming to a head and getting more information, knowing what this is.
It is a lot of information. It is overwhelming. Not knowing what's coming next or what to expect, that kind of took a punch in the gut.
Katrina Hamel: Nikki, how has Chorea affected his/your quality of life and everyday living?
Nikki: So obviously, with writing, it was hard for him to hold a pencil, write his name, sign his name. So he couldn't fill out paperwork for job applications, stuff like that. But at that point, he didn't even want to do it.
It was discouraging to him that he couldn't do the simple task of writing. Eventually, it got worse, so he wasn't able to work. And then the movement started getting more significant with his legs. He would be sitting there, and his legs would kick up in the air. It was hard for him to just hard for him to sit still.
And then, of course, you have people that don't know the situation, looking like, "what's wrong with you?" Like, "why can't you sit still." So I was always needing to explain the whole thing. And, it becomes this lengthy explanation and process of explaining why he's moving so much.
It affected his swallowing for sure. When he would be sleeping, he would grind his teeth all the time. It's hard to sleep next to him because he was always moving. His legs and arms were always moving making it difficult to get a good night's sleep for me at him. I'm sure.
There was also a lot of difficulty in dressing. It was that fine motor skill of buttoning up a shirt was gone. If he wanted to wear his earrings, I'd have to help him do that because the backs are so small. Eventually, it was hard for him to buckle his belt buckle. Shoes were hard putting on as well. Most of the time, we just left them tied and just slipped his feet in and out of them to make it easier for him to do that.
He needed more and more help with everything as the movements got worse.
Katie Jackson: Were there any accommodations made around the home?
Nikki: He had a home aide come, but just for an hour and a half in the morning. That's when he wasn't totally dependent on somebody. Now he is not able to walk, so he needs somebody at home all the time.
Katrina Hamell: When you are out in public as a family, or just you and Darnell, have you noticed any sort of public impact?
Nikki: There's been a couple of times when we were out that people would think that he's drunk, and he is not just by the way, he moves and stumbles. We were actually at a bard, and we complained to the manager about how we were treated.
We told them like the situation, about HD, and what was going on. We were still miss treated. My friend had made a posts on Facebook about the experience at this place. They messaged my friend telling him they were sorry, and if you want to come back, they can offer you this and that. I had him screenshot information about Huntington's to send back to them, so if you ever come across this again, they will understand it better. Another time we were out at a comedy show, and he was going down some steps, and he tripped, and he fell on some people. They started yelling that he was intoxicated, and it was embarrassing for him.
You feel bad because people always think they are drunk, and it's not the case. People don't know your story, and they assume the worst.
Katrina Hamel: Yeah, that happened to my brother. He went to have a sandwich with my dad and wanted to order a beer. The restaurant wouldn't serve him. They wouldn't serve him because they thought he was drunk. That caused some somewhat of a scene because my brother kept saying, "I am not drunk." IT takes a lot of education and awareness.
Katie Jackson: One time, we were on a cruise, and we were asked to go back to our room because they thought Mike was too drunk in public. He was so embarrassed that they did this right in front of our young kids.
It is frustrating because we understand our loved ones can't help it. We are just out with our families trying to have a good time and the public impact often takes that away from us.
Katie Jackson: You have a young daughter, how have you seen HD impact her?
Nikki: Yeah, it's tough because she's so young, she's only five. I try to be as honest with her. When she was born, he was already really declining. So she never got to know the real Darnell. She never got to see him function like a normal person.
She knows he's sick. She will say things like, "when's daddy going to get better," and that breaks my heart. You don't want to say he's never getting better, but he will not get better. She seems to handle it okay for being five. She's great with him and helps him out. She will adjust his pillow or get him things. Then she'll see something like how other dads are with kids. She will make comments like, "Oh, I wish my dad can do that." My heart just crumbles because I know she wants that. It's just that he's not able too he can't help it. So it's difficult now because he used to come to visit on Fridays, but now he cant since he is bedbound.
Katie Jackson: I remember when that Macy, my eight-year-old, was born. Mike was in the hospital with Chorea rocking in the chair. I literally handed him this 9-pound baby with him moving uncontrollably. So that literally has always been her normal, having a sick dad from birth.
She would say things like, "I just have a different type of dad because I don't go to the park."
Another example was Father's Day. This school system makes Fathers Day, so the dads come and have donuts with their kids. What about the kids that have sick parents or don't have a dad? I'm like, you're not going to school today because I'm not going to have you sit around and watch dads happily eating donuts with their children when your dad can't even swallow anymore.
So I think that we will wrap up for today. We're trying to, throughout this series, talk about symptoms and how they impact our families. Also, what we do as families to support each other and our loved ones through them. Always seek medical attention for these symptoms because there are things out there for depression, psychiatric behaviors, and Chorea the involuntary movements. There is Austedo and Tetrabenazine that are FDA approved. So there are medications out there. Make sure you seek help if your loved one needs it. And see what the medical team can do for them.