As Huntington’s disease (HD) progresses, as many as 93% of HD patients experience communication difficulties 01. Some patients may struggle with articulation, recall, and impulsivity (such as interrupting others).
Today, HD patient contributor Sarah Foster explores her four communication sticking points and how they can affect her daily life.
With Huntington's disease, the decline in communication skills is slow but inevitable. While I try to create "life hacks" to better handle new challenges, they’re not always successful.
Around the time I was diagnosed, I first noticed myself drawing a blank in conversations. I was quick to share this observation with my newly-formed HD team. The speech therapist gave me some worksheets about word retrieval.
I was disappointed because I expected the speech therapist to cure my communication problems. I read the worksheets and promptly filed them under "Strategies for Other People."
I was in denial.
From then on, I got given the worksheets every time I reported a difficulty with my communication. I put them all in a file, along with all the duplicates I'd received over the last decade.
These days, I have difficulty holding up my end of the small, back-and-forth conversations that make up a day. Rupee, my HD service dog helps me with some challenges, but he can’t help with this!
Like all transitions in my life, changing subjects is challenging. Switching topics takes me longer than it does for others, and I struggle to keep up with a normally-paced chat. Then I can't find the word I am looking for, which is a nightmare. During most conversations, I am challenged in three ways: processing what another person has said, retrieving words, and making decisions.
A triple whammy.
The other day, my husband, Randy, was sorting through a stack of papers.
“Do you need this one?” Randy had already started moving the piece of paper toward the trash can, where he thought it belonged.
My "internal escalator" sped up. Inside, I was running up ceaselessly moving stairs so I wouldn’t get sucked into the floor.
“No, no, no,” I say. And I wait for the answer to come out of my mouth, but it doesn’t. My thoughts, which used to flow like water, are now drying up.
Randy is waiting for me. I notice he has a whole stack of other pages, meaning I have to make at least 20 decisions as quickly as I used to - as quickly as a typical person would.
“I need it,” I said. It would be saved to remind me to do something, but that was too complicated to explain. I was exasperated.
Next in the stack of papers were the worksheets. My husband handed them to me and said,
"Here, I think you need these now.”
This time, I decided to use them instead of filing them.
One-word retrieval practice calls for me to retrieve examples belonging to a given category. For example, one exercise is to name all the animals I know whose names begin with the letter "F." As I sat there and brainstormed, “Fish, feline . . . hmm,” I wondered: would it have helped had I been doing these exercises all along? I don’t know.
Another worksheet technique involves a circumlocution process (i.e., talking around the word I can’t retrieve). That's when someone asks questions such as, “Is it something you need? How big is it? How is it used?” It’s like charades. Sometimes, when I try to describe where something is in relation to another thing, I draw it. It's easier for me to say, “It’s like this,” and point, than to say, “It’s four rows down and two columns across and under the table." In the same way, I remember and process the words or pictures people show me.
A few years ago, I made a pact with myself to treat my HD symptoms as they come, but trying to have a conversation weakens my spirit. I know it has a physical effect as well. My physical therapist has shown me how much more difficult walking is when I'm talking at the same time. So, if someone asks me something when I am walking, I slow down or stop.
Sustained talking, like anything else, exhausts me. Randy calls it to my attention if I don't recognize how tired I am. My symptoms get so much worse when I'm exhausted. This is when we choose to put this day to bed and Huntington’s disease with it. This extreme lack of functioning is temporary. My head will be clearer after sleep.
Another one of my HD-related cognitive symptoms involves forgetting to communicate the most crucial detail when it counts the most.
A few weeks ago, I watched Boots, our beloved house cat, escape and get attacked by a dog. It was too far away for me to intervene, and they disappeared into the forest. I searched the area, but there was no sign of either Boots or the dog. I decided to keep watch on the deck.
Randy called, as he often does on his way home from work.
“Do you want to go out for dinner?” he asked.
“Yes,” I said. When somebody calls me on the phone, I lapse into well-worn conversation habits, no matter what's happening around me. Even if something threatens immediate danger, my brain will put it "on pause" while I natter niceties into the phone. It's an automatic reaction, but it makes no sense.
He was suggesting a restaurant when I interrupted. “Something else has to happen first. I don’t know what it is. It’s about Boots. I saw it. We have to find him. I’m scared he was killed.”
“What happened to Boots?” I managed to convey what had happened, and before I knew it, he and our son, Mark, were home. Boots came back, and he was fine.
By Boots' return, I had finally figured out how to explain what happened. I kept retelling the story about seeing the dog attack Boots, hoping some new detail would emerge and clarify things. A few did, but Randy and Mark had moved on with life. I, on the other hand, was still stuck in anxiety mode.
At the end of the day, Randy joked about me burying the lede.
It seems I can no longer discern how important something really is.
Several months ago, Randy was at the neighbor’s house while I was cooking dinner. I had started sautéing something on high heat without thinking that the heat might radiate to the slow cooker on top of the cooktop. It did, and melting occurred, followed by smoke.
As this happened, I kept stirring the vegetables so they would cook evenly. Then I looked at my situation. This was neither usual nor normal. Randy would know what to do. I knew Randy was at the neighbor's for a reason, but I called him immediately.
"When are you coming home?" I asked.
“Thirty minutes,” he said.
“How is he doing?” I asked about the neighbor.
"And there's some smoke here. Maybe a fire," I added.
Randy was home in a flash and extinguished the smoldering pressure cooker. After it cooled, he threw it out. We had pizza instead.
My Aunt Naomi, who had HD, responded to the hive of bees in her chimney by sticking her shotgun up there and firing it. This was totally the wrong thing to do. As a child, I created a cartoon version of Aunt Naomi. When she shot up the chimney, I imagined cartoon bees forming an arrow aimed at her before they all stung her.
You would think this could serve as a cautionary tale for the adult me, but more and more, I'm sad for her.
Interruption is a no-no in my household. However, I have started to take liberties with turn-taking. If I don't say what's on my mind immediately, I'll forget it.
I started interrupting with, “Remind me to tell you something.”
But it’s often impossible to hold on to a thought when another person is talking about something completely different. There's no way I can take in the main conversation when I'm fixated on something else.
So, I have figured out a way of interrupting to create less of a fallout.
“Remind me to tell you about the appointment," for example, is a more effective way to interrupt rather than blurting out a whole anecdote. This way, I don't derail the conversation.
Meanwhile, the person with a healthy brain can remember that 1) I need to tell them something, and 2) it's about something specific - i.e., my appointment. This knowledge frees up my brain to pay attention to them.
I used to have a computer app to catalog people's faces and names and how I knew them. I studied it, and it helped me put their names into my long-term memory, which is stronger than my short-term memory. Nowadays, when I meet people I don't recognize, I ask them to reintroduce themselves to me. I did this at the book club meeting last month, and I was happy that a couple of the members have already reintroduced themselves to me.
I don't doubt that, someday, I'll only be able to communicate by typing out my inner monologues like I’m doing now. I don't know why I can still manage this, but I'm grateful. This one intact ability assuages the bitterness I feel about the dreams that HD has denied.
The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.
Communication Issues in Huntington’s Disease, https://huntingtonsdiseasenews.com/hd-symptoms-communication-problems/ Last accessed September 2023.
The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.
NPS-ALL-NP-01119 OCTOBER 2023