Ron Pfeffer believes in the power of positive thinking. That's why he didn't panic when he learned the cause of the debilitating headaches that had plagued him for two weeks: glioblastoma, a fast-growing brain tumor. To him, the diagnosis was simply an answer to a question. To his daughter Allison, it meant more than that. She had recently become engaged and was planning to get married sometime in 2024. After her father's diagnosis in November 2022, she moved the date up to April 8, 2023.
People with glioblastoma survive for an average of 14 to 16 months. The disease claims more than 10,000 people in the United States annually, according to the National Brain Tumor Society. With those odds, Pfeffer was grateful for the earlier date. “You don't know early on what's going to happen,” says the retired high school biology teacher, who lives in Amelia Island, FL, with his wife, Janet. “It's a very aggressive tumor. The data online are sobering.”
Being able to participate in the festivities, including the traditional father-daughter dance, meant a lot to Pfeffer. The wedding took place five months after he underwent surgery to remove his brain tumor and while he was undergoing chemotherapy. At the time Pfeffer also was in a clinical trial for Optune, a wearable device that creates abnormal electromagnetic fields in the brain. For the big day, Pfeffer was permitted to go without the portable device.
The wedding of Tom Canning's daughter Laura was six weeks away when he had a stroke while vacationing in Pinehurst, NC, in May 2022. Canning was enjoying a hearty meal with friends after a long day of golf. The mood was jovial and the company in good spirits, but it wasn't long before everyone sensed that something was wrong. “My friends suddenly realized that I wasn't talking,” Canning, 67, says. “I only had a little bit to drink, so they knew I wasn't intoxicated—something else was going on.” Within 30 minutes, Canning was in the back of an ambulance rushing to Chapel Hill Medical Center, with his wife, Paula, and three children en route from their respective homes across New York State. After undergoing surgery to remove a blood clot and spending a weekend under observation, Canning returned home to Pelham, NY, with Paula.
Although doctors said the stroke caused minimal damage—it didn't paralyze him, affect his memory, or interfere with his ability to walk or swallow—Canning did develop aphasia. The condition, which affects more than a third of stroke survivors, impairs the ability to use and understand language. “It was hard to not be able to speak, because I think of myself as a very verbal person,” Canning says. Conversations that veered into unrelated topics were particularly troubling. “I had to say ‘Hold on' and search for my words. That struck me as one of the hardest things about it.”
Despite their medical conditions, both Canning and Pfeffer wanted to fully enjoy these weddings. Attending major life events like weddings, graduations, or funerals—or even small social gatherings—can pose challenges for people with neurologic disorders, especially if they have limited mobility or cognitive or communication problems.
“It may be hard for people to find their words or remember names,” says Melissa Armstrong, MD, FAAN, director of the University of Florida Health Dorothy Mangurian Clinical-Research Headquarters for Lewy body dementia. Her clinic, which focuses on patients with movement disorders who also have memory and thinking problems, sees people every year who decide not to attend events, she says.
People with severe memory and thinking problems may become easily confused and agitated at a social event, and traveling late in the day could increase agitation, anxiety, and confusion in people with dementia. Fatigue is another problem, since normal stress and exertion can affect symptoms. While Pfeffer's side effects have been minimal, he was exhausted for a few days after his daughter's wedding.
Choose Carefully
Winnie Anderson of Lewiston, NY, has had to carefully choose which events to attend for the past 20-plus years—ever since she sustained a traumatic brain injury in a 1999 car crash. She has vision impairment, cognitive processing problems, and herniated discs. She also has had trouble controlling her emotions, a condition called pseudobulbar affect, which may cause her to burst into tears during a particularly moving conversation.
Many people with TBI have difficulty regulating their emotions, says Kristen Dams-O'Connor, PhD, a clinical neuropsychologist and director of the Brain Injury Research Center of Mount Sinai in New York City. They often get frustrated or angry easily and may say or do things impulsively or inappropriately, which can be a significant deterrent to socializing.
Anderson, 60, says she may stay home if an event is held in a venue that would be disorienting with her vision problems, and she avoids being around people who don't know her well or to whom she'd have to explain her situation. Because her limitations aren't physically apparent, “it's like people think you're faking,” she says.
“People say, ‘You look fine. There's nothing wrong with you,'” says Anderson. “They don't understand what I'm dealing with, so I've had people be incredibly mean. I found it easier to not expose myself to that potential discomfort and having to explain to people why I'm sitting there with one eye shut while I'm trying to cut my food because I can't see my plate.”
Because of her poor vision and problems with depth perception, Anderson would often walk into displays at grocery stores. To overcome it, she started her own version of “retail therapy”—going into shops and practicing walking through the aisles. It's been a real boost to her confidence, she says. “The more I go out and challenge my brain and myself, the more I realize I can accomplish,” she says. “And it becomes this self-fulfilling prophecy.”
Traumatic brain injury also can impair the ability to pay attention. “During a conversation, it may be hard for people to maintain concentration when listening to others, which means they can miss key details and overlook nuances in the discussion that are important for clear communication,” Dr. Dams-O'Connor explains. Another cognitive symptom of TBI is slower processing speed, which makes it difficult to understand and digest information: “By the time a speaker is on the second half of a story, a person with a TBI may just be processing the first part,” says Dr. Dams-O'Connor.
Plan Ahead
When people with neurologic conditions continually skip family events, they may become isolated and depressed. But with advance planning and input from a medical team that includes physical, speech, and occupational therapists, attending a special occasion is possible—and doing so can be good for mental health, according to research. A 2021 study in the journal PLOS One found that older adults with dementia who had frequent and positive social interactions reported better cognitive performance, sometimes for up to several days, after attending a social event. Partaking in such activity also can boost confidence, provide a feeling of normalcy, and reduce depression.
If you have a special event coming that you'd like to attend, the first step is to meet with your health care team, says Sarah Chen, a licensed social worker at the Rush University Medical Center in Chicago. She and her staff go over a patient's medical history to identify symptoms that might be affected by overstimulation or fatigue. Then they discuss the details of the event and set priorities. “For a wedding, for example, it may not be crucial to stay to the end of the reception, but at least be there for the cutting of the cake and speeches,” she says. Additionally, Chen will brainstorm with the family about how to make the day more manageable. “If they're staying in the hotel where the event is taking place, for instance, they could rest in the room periodically.”
Dr. Armstrong agrees and encourages people to schedule downtime the day of an event (or daily if the event lasts multiple days) “to give them a chance to rebalance, have quiet, and nap if needed.”
Listen to Your Body
Saying “No” also helps, says Tina Zimmerman of Massapequa Park, NY, who was diagnosed with multiple sclerosis in 2008 and now uses a wheelchair. The 57-year-old keeps herself in good shape so she can still travel and attend events, but she knows her limits. “I've chosen not to go to certain weddings and events because they require too much energy for what the payoff would be,” she says. “But for the most part, if I can manage it, I do it.”
Travel can add to the difficulty of attending events. Changing time zones may disrupt a medication schedule, so consult with your doctor about how to adjust. Missing a dose can exacerbate tremor or stiffness in people with movement disorders such as Parkinson's disease. “If you're traveling from the East Coast to the West Coast, you might have taken all your medications by the time you arrive, but you still have five hours before bed,” says Chen. “Your doctor can prescribe extra doses or otherwise change the medication schedule.”
Partner Up
Having a companion for an event can make a big difference. “If you have somebody who supports you, ask if they can come if they have not been invited,” suggests Anderson, who feels more comfortable when she attends an event with someone. For one thing, she can hold on to them if she suddenly becomes unsteady on her feet.
“People who struggle with behavioral regulation might need a friend or relative who can give them discreet signs to indicate taking a break, slowing down, waiting their turn, or something else,” Dr. Dams-O'Connor says. Decide beforehand on the sign, such as a raised hand, and when to use it. “Otherwise, this kind of intervention can feel punitive or embarrassing—which is, of course, at odds with the goal of empowering a person to participate,” she says.
Zimmerman, a former special education teacher, gets by with the help of “an amazing support system” of family, friends, and former co-workers. Her 25-year-old daughter, Stefania, “gets me out and about,” checking the accessibility of places. Zimmerman's friends help with regular events, not just special celebratory occasions. “I have a book club group that used to rotate from house to house. Now everybody comes to me, but whoever's turn it is picks the book and plans the dinner,” says Zimmerman, who shares her experiences on Instagram and offers tips on going out when you have physical limitations.
Assess Your Options
When getting ready to attend an event, advises Chen, find out as much as possible about the venue, activities, and transportation there and back. Try to anticipate and manage any obstacles or challenges. Is there a choice of entrée for someone who has trouble swallowing or chewing? Is the site accessible by wheelchair or walker? Is the bathroom big enough for a wheelchair? Is the lighting bright enough? Call the venue directly to get answers. “If you have a special need, do not be afraid to say so and ask for whatever accommodation you might need,” Anderson says. “I like to sit on the end if I'm at a long banquet table, so I always ask for that.”
If you're expected to speak at the event but your condition could interfere with your remarks, consider prerecording them in case you're not up to public speaking when the time arrives. “Practice your speech on a day you're feeling well and record it, just in case,” Chen says. “Having a backup like that helps reduce anxiety.”
Ahead of his daughter's wedding, Canning met twice a week with Susan Young, a speech therapist, who encouraged him to trim his speech from a four-page draft to 10 or 11 sentences and to make the speech with his wife, Paula. “Susan suggested that I read a couple of sentences, then have Paula read, so we would take turns and deliver the speech together,” Canning says.
Once they finalized the words, Canning and Young spent several sessions working on delivery, picking out problematic words, and exercising the part of his brain that needed to group words together. “She would give me a sentence of about 10 to 15 words, and all the words were broken up and divorced from one another,” Canning explains. “The challenge was to put them back in their logical sequence by recognizing certain groups of words that are commonly used together.”
Between practicing the speech and strengthening his cognitive function, Canning says, the sessions became less like work and more like “a fun thing that we all did together.”
By the time of the wedding, Canning had recovered most of his language and improved his enunciation, pacing, and stamina. He and Paula delivered the speech at the wedding reception without any trouble. “People really enjoyed it,” Canning says.
A year on from his stroke, Canning occasionally must pause to find a word when talking, but he's back to writing his own texts and emails—even if they take longer and require careful proofreading—and enjoys doing crossword puzzles to help sharpen his language abilities.
The positive-thinking Pfeffer believes his daughter's wedding won't be the last big event he attends. “My goal is not weeks, months, or years,” Pfeffer says. “My goal is decades. I have two grandchildren who are nearing their sixth and fourth birthdays. And I fully intend to see them graduate from high school and college and even go to their weddings.”
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