It was the last full day of an amazing vacation in England. My husband, son Luc, and I had completed an eight-day hike along 80-plus miles of the Southwest Coast path—what the British call a “walking holiday.” But this last day of our vacation was not going to be as much fun. We were traveling by bus and then by train to our final hotel stop near the airport. It would be almost a full day of travel, and we were all tired and not looking forward to leaving England behind or to the seven-and-a-half hour plane ride home.
We got on the bus and stashed our suitcases and backpacks on the designated spot on the floor; my husband and I sat on one side of the bus and our son sat on the other side, to our left. As we settled in for the long bus ride to the train station, we were silent, each thinking our own thoughts. For me, the end-of-vacation blues were already settling in.
At the next stop a young man boarded the bus. I guessed him to be in his mid-to-late 30s. He wore hiking boots and a backpack and carried a small suitcase. He was having difficulty paying his bus fare while juggling the suitcase. His difficulty arose from constant jerky motions in his head and arms. After paying his fare, he deposited his suitcase in the designated area, again with difficulty, and sat down in the first row of bus seats.
Sitting three rows behind him, I watched as he sat, making jerky motions with his head and arms the whole time. His facial muscles also were constantly moving. I tried to imagine the effort that it must take for that man to simply sit on a bus, and I wondered if his body ever relaxed. Neurological disorder, I thought. Maybe Parkinson’s? Tourette’s?
At the next stop an elderly woman boarded and looked directly at the man as if to say, “I’d like to sit in that front seat, if you please.” The man got up, again with great difficulty, and moved one row behind, next to an empty seat.
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At the following stop, a couple boarded and looked for two seats together, but there were none. The young man once again relinquished his seat and moved two rows back, into the seat next to my son. Luc smiled at him and said, “You’ve been getting displaced a lot.” The man laughed and asked if Luc was American. “How did you guess?” Luc asked, with his New Jersey accent.
“I LOVE Americans!” the man said with great enthusiasm. “They are all so nice and so healthy!” (That gave me pause.) Luc and the man struck up a conversation. Luc told him that he had joined his parents on this walking holiday in celebration of finally earning his bachelor’s degree after being sidetracked by Lyme disease and a few years of working while trying to decide what to do with his life. The man asked Luc what his major had been. When he heard it was in math, specializing in biology, the man said, again with great enthusiasm, “Oh good! You can find a cure for Huntington’s disease! It was an American who first described the disease!”
Getting to know the happy man
The bus arrived at the train station where we all got off to wait for our respective trains. It was extremely hot and my husband, Luc, and I sought shelter from the sun in an enclosed area of the station. The man sat on a bench on the platform, in the sun. After a while, the stagnant air of the shelter became unbearable and I decided to sit on a bench, preferring the hot sun with a bit of a breeze to the shade with no breeze. I looked for an empty bench. They were all full except for the bench where the man from the bus sat alone, making his jerking motions. People walked by him, glancing and then quickly looking away. It was obvious that nobody wanted to sit near him.
I sat down next to the man and we started talking. (Somehow, even though I talked with him for quite a long time, I never asked for his name, so I refer to him here simply as “the man.”) He was very sociable and enthusiastic and seemed to LOVE just about everything. He shared his history with me. He had two children, ages 24 and 26, who lived in London with their mother. (I mentally revised his age to late 40s.) His children had a 50% chance of inheriting Huntington’s disease (HD) but they didn’t want to get genetic testing done. His father had died of Huntington’s. The man was diagnosed about six years ago.
He said he was homeless, but I suspected that homelessness was intentional since he was traveling from place to place. His next stop was Mallorca, Spain. “Have you ever been to Mallorca?” he asked me. I hadn’t, and he replied, “You must go. You will LOVE it! It’s so nice and the people are so friendly!”
He had previously lived in the United States for a little over a year, in Kansas and in Florida. He used to be a trail runner and had run throughout the world, but now he walks the same trails that he used to run. His enthusiasm for life impressed me. I didn’t know then what I know now—the lifespan for someone with Huntington’s is 10 to 30 years after symptoms first appear.1 Six years into the disease, he might have as few as four years left. I now wonder if his wanderlust and enthusiasm for life were because he suspects time is running out for him and he needed to make the most of what he had left.
The man showed me the specialized tablet that was hanging from his neck. He said it was developed by the Michael J. Fox (“another American! I love Americans!”) Foundation for people with Parkinson’s disease, but it came in handy for him as well since it was voice activated.
Oral manifestations of Huntington’s disease
He asked me what I did for a living. When I told him I was a dental hygienist, his face lit up. “My mother was a dental hygienist!” he said, and yes, like all hygienists, I had noticed his teeth. They looked clean and were straight (not as common in England as in the US). He went on to tell me that Huntington’s affects the mouth. I assumed he meant that the jerky arm motions caused by the disease made it difficult to perform good home care, but he said the disease itself causes oral problems.
Once I got back home, I looked into this disease and discovered that it does affect the oral cavity. Oral manifestations become more noticeable as the disease advances. The more severe the HD, the worse those manifestations, which include dysphagia (difficulty swallowing), dysarthria (weakened or paralyzed speech muscles, resulting in slurred or slow speech), masticatory problems, oral health impairment, and choreiform (involuntary, spasmodic) movements involving the tongue and other orofacial muscles.2
I’ve mentioned this man’s enthusiasm several times. He seemed to genuinely love talking with people and traveling throughout the world. I admired his positive attitude, especially since life had dealt him such a cruel blow with this disease for which there is no cure. Only once did the smile leave his face. That was when he told me that the hardest part of the disease was that some people assumed he was drunk and were not very nice. But the smile quickly returned as he said, “Then I just do this,” and he made a finger gesture. Clearly nobody was going to rob him of his happiness.
I have since learned that there are several psychiatric disorders associated with HD, the most common being depression. This man certainly didn’t seem depressed, but other common symptoms are mania and bipolar disorder. His joie de vivre may have been due to either of these, but I’d like to think that he truly was a positive and happy person. Hiking alone throughout the world with this disease certainly must have presented many challenges, but perhaps it was hiking in the beauty of nature that kept his spirits up.
The train that would take us to the airport arrived and I said goodbye to the man. He wished us a safe trip and I wished him the same. We went our separate ways, both with smiles on our faces.
I sat on the train thinking about the man with HD. Here I had been feeling sorry for myself because my vacation was coming to an end, and this man was finding joy in life despite the incredible limitations and uncertainties of his disease. In my mind I thanked him for demonstrating that life is a gift to be enjoyed, and sometimes I just need to focus on the good instead of the not-so-good. He also reminded me to look for the good in everyone, even those who are easy to ignore or make us uncomfortable.
The man gave me a gift that day by sharing his happiness. As a hygienist, I hope I can pass along that gift to my patients and be like the happy man with Huntington’s.
- Huntington’s disease. Mayo Clinic. May 17, 2022. https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117
- Munhoz L, Jabbar AQ, Filho WJES, et al. The oral manifestations of Huntington’s disease: a systematic review of prevalence. Oral Dis. 2023;29(1):62-74. https://pubmed.ncbi.nlm.nih.gov/34773332/