A year or two after she was first diagnosed with primary-progressive multiple sclerosis (MS), Shelley Peterman Schwarz was at a friend's home for a big Hanukkah gathering. Her children, then about 6 and 4, gathered with the other kids at a small table to eat their holiday meal.

"All the mothers were hovering over their children, cleaning up spills, wiping off hands, cutting food. I sat at the dining room table watching them. I was so fatigued and my balance was so poor," she recalls. "That is a memory seared in my mind: the realization that I was not going to be able to do what everybody else did." Peterman Schwarz, who has since written six books in the Tips for Making Life Easier series (Demos Medical Publishing) for people with a variety of conditions, from MS to arthritis, knew that her holidays were going to have to change.

Now, more than 35 years later, Peterman Schwarz uses a wheelchair and has only limited mobility in her hands and arms—but her holidays are more packed with love and joy than ever. "They're just different," she says.

"Sure, we take a lot of shortcuts. I buy pre-cut apples for our Passover charoset [a sweet fruit and nut dish]. One Thanksgiving, my mother bought one of those turkey dinners from a grocery store. But we still have a full house on most holidays—our kids and their kids, and friends we've known for years and their kids. We have a history together, and the good times and laughter and shared memories are what matter—not a fancy menu or how much I did by myself."

Many people with neurologic conditions like Peterman Schwarz's find themselves rethinking beloved traditions and big family gatherings, searching for ways to make the holidays more manageable while at the same time holding on to their meaning. We asked experts and several families how to adapt.

Acknowledge Grief and Loss

The difficulties of a significant progressive neurologic condition like MS, Alzheimer's disease, or Parkinson's disease can be particularly pronounced during the holidays, says Jessica Katz, MSW, LCSW, coordinator of the National Parkinson Foundation Center of Excellence at the University of North Carolina in Chapel Hill. "If you've been doing things a certain way for so many years, but that way is now more difficult for you, it can really have an impact on your sense of self."

Perhaps you've always hosted the holiday gathering, with a houseful of grown children and grandchildren, aunts and uncles, and cousins. Home-cooked, once-a-year holiday dishes graced the huge table. But now, after a stroke or a spinal cord injury, you can't handle the stress. Or maybe your father or grandfather was the patriarch at the head of the Thanksgiving table, proudly carving the turkey, but the tremor in his hands from Parkinson's makes that impossible now.

"Those are real losses. They are something you have to grieve," Katz says. "Giving up longstanding traditions can be a blow to your identity."

Start a Conversation

"When someone has been diagnosed with MS or another neurologic condition, it's important for the whole family to talk together and make a plan for how to deal with holidays," says Rosalind Kalb, PhD, director of the professional resource center at the National Multiple Sclerosis Society in New York City and author of Multiple Sclerosis: A Guide for Families (Demos Medical Publishing, 2006). "Can you do things the way you've always done them? Or do you need to develop some new traditions that take into account a chronic disease?"

Be Open-Minded

It helps to have a flexible mindset, says Katz. "You have to weigh what's in your control versus what's not, and know that you can control how you choose to adapt to those changes." And remind yourself that holidays are never as perfect as we remember them, even when we're in the best of health, says Dr. Kalb. "There are always stresses and strains. Figure out what will give you pleasure without totally exhausting you."

Scale Back

As a family, assess which traditions are most important and which ones can be let go or modified, says Ruth Drew, director of Family and Information Services at the Alzheimer's Association in Chicago.

For the Stratton family, that meant eating out last Thanksgiving. That never would have happened before their mother was diagnosed with Parkinson's disease four years ago, says daughter Jill. "It really made it much easier on my mother. She did want to have dessert back at home, so she and my grandmother each made a pie."

Christmas traditions have changed, too, but the holiday is still special, says Stratton. "My mom used to put up three Christmas trees. This year she'll just put up one and make that really special. You can make things simpler and still retain the essence of the tradition."

Hold on to Humor

What we remember most from holidays isn't usually the perfectly set table or the meticulous decorations. It's more often something funny like Dad's hilarious pre-dinner toasts, the time the cat knocked half the ornaments off the tree, or everyone sitting around the table after dessert, stuffed and talking for hours. Peterman Schwarz says memories of the less-than-perfect times are one of the best parts of her family's holidays. "We have some great stories, like the year the stove didn't work and we had to get takeout!"

Share the Load

Enlist the help of friends and extended family to pitch in and make the holidays a more communal and cooperative affair. Christmas or Thanksgiving dinner could be a potluck, or hosts could rotate from year to year. Instead of buying gifts for everyone, draw names from a hat so each person is a Secret Santa to one other person. Be open to assuming different roles during the holidays. That's what Peterman Schwarz's husband has done as her disease has progressed. "My husband is my hands," she says. "He does the grocery shopping—I give him the list. He buys the flowers and cuts them, and I arrange them. Some of the women come ahead of time and help me set the table." With this arrangement, she and her husband hosted about 22 people for Yom Kippur last September.

Stratton and her two sisters have also stepped up to help their mother decorate over the past few years. "But we ask first, we don't just take over," she says. "I say to my mom, 'If you want, I could come home a little earlier and spend the weekend helping you get the tree up, so we can pace ourselves.'"

If it's time to hand down a cherished tradition, like being the host of the family dinner or carving the turkey, you can make a ceremony of passing it on. "That's part of your holiday legacy too," says Katz.

Control the Chaos

The holidays can be a stressful time for everyone, but for someone with a neurologic condition, especially one that involves cognitive impairment, stress can be overwhelming, says Drew.

That's definitely true for Rick Phelps, who worked in law enforcement and as an emergency medical technician until he was diagnosed with early-onset Alzheimer's disease in 2010, at the age of 57. He created Memory People, an online support group for people with dementia, which now has more than 12,000 members.

"My wife and I have kids and grandkids, and the holidays were always a big time for us," says Rick. "But now it increases my stress level about five-fold. Any more than two people is a crowd for me, and I have trouble following the conversation. I worry about people being here, and how long they're going to stay. Anything out of my routine is stressful, and moving the furniture and putting up the tree is definitely out of my routine."

Rick and his wife, Phyllis June, have made some adaptations to keep the chaos under control and maintain some semblance of the routine that is so important to him. For example, no matter how many people are in the house, they make sure Phyllis June is always seated in her usual spot near him. If she isn't, it throws Rick off and his stress skyrockets.

And they still put up the Christmas tree—but not two or three weeks ahead of time like they used to. "It goes up the day before Christmas Eve and comes down right after Christmas Day!" Rick declares.

Rick and Phyllis June now go to their daughter's house for holiday dinners, instead of having her family come to them. "That way I have an out and can leave if I need to," he says. "We go down there and eat and open presents. That's still very difficult for me because of all the commotion. But if I feel overwhelmed, I go out and walk the dog and come back in."

Noise and confusion are often overstimulating for people with dementia, says Drew. "Having a quiet place to which they can retreat is really helpful. And if you can stay as close to a normal routine as possible—eating at the usual time, going to bed at a regular time—that is very important."

Focus on Each Other

People with Parkinson's disease, dementia, or other neurologic conditions can sometimes get lost in the crowd at gatherings. "People may unwittingly ignore them, talk over them, or finish sentences for them," Drew says. "If you're the one with the disease, it's important to advocate for yourself as much as you can. Say things like, 'I am still a valuable part of this family, and I want to be in this discussion. Please have more patience with me.'"

To encourage conversation and make it easier, limit distractions. Turn off the football game playing on the television or lower the volume on your favorite holiday tunes, for example.

Ease or Limit Travel

If you are traveling for the holidays, make sure to plan ahead, and build in plenty of rest time. "Every step of your routine—packing, leaving to drive or catch the plane, going through security—it all takes longer," says Katz. "In my support groups, people often say they use a wheelchair when traveling through an airport, even if they don't typically need one every day. Since it's harder to walk long distances when you have a disease like Parkinson's or MS, it makes sense to take advantage of things that can conserve energy and ease stress and fatigue."

That's what Nicole Lemelle, a former critical care nurse living in New Orleans, has learned over the years. Diagnosed with MS in 2000 and now in a wheelchair, she and her husband, Tommy, still travel one to three hours to spend the holidays with one or the other side of their extended families.

"Before each visit, I make sure I have my medications packed. I also keep enough water handy to stay hydrated during the trip," she says. "The drive is tiring, so I take a medication that helps with fatigue. Also, due to bladder problems, I use a catheter, which allows me to ride long distances without frequent restroom breaks." She's still worn out when she arrives, so she typically rests for a few hours to recoup.

Let It Go

A hard but important lesson for Peterman Schwarz was the importance of letting go. "People are very willing to help you keep up your holiday celebrations, but they may not do things your way," she says. "They may not keep your kitchen in the order you would, but you can't micromanage. I have to accept that I'm not doing it and stay out of it."

When the Lemelles spend the holidays with Nicole's family in Dallas, there are usually about 40 aunts, uncles, and cousins in the house—and they all want to help.

"Nicole doesn't really have to ask for anything. Everybody kind of chips in. Her aunt usually fixes her a plate of food," says her husband, Tommy. "Her uncle or nephew will help her to the table when the food's ready. It's unspoken now because it's been a few years—it just happens."

"It's humbling," Nicole says, to be waited on like that, and frustrating for a formerly active professional. "I have had to learn to accept help and check my ego at the door. It took me a while to acknowledge I needed help, but I'm so glad I finally did—it allows me to enjoy the holidays much more, without exhausting myself."

Create New Traditions

Encourage new ways of celebrating old holiday rituals. The Lemelles' extended family has transformed their holiday game night to ensure Nicole can participate. "Before, the games were more physical. You had to get up and play hide-and-seek with the little kids, for example," says Tommy. "But now we play charades, and more board games and card games. Things that can include a person in a wheelchair."

In Peterman Schwarz's house, her grown children have embraced Stove Top stuffing and gift cards. To retain a little magic, Peterman Schwarz wraps the gift cards and hides them around the house.

Let the new rituals happen naturally, says Kalb. "Forcing new traditions purposefully can be too burdensome." If families allow them to evolve gradually, they may discover a new tradition accidentally.

Take Stock

The holidays are often a time for reflection, as families and friends rejoice in being together or look back on the year past. For those who've had to relinquish the old picture of who they were or how their families were during the holidays, it can be a time to focus on what matters, Katz says. "You realize that you may have Parkinson's or Alzheimer's disease or MS, but you remind yourself that you have a great partner. Or you appreciate that you can still go on a plane to visit somebody. Or that all these people have chosen to come to you, to surround you in this season. It's not easy, and you have to work at it, but it is so important to find that joy, especially during the holidays."

Sharing a Diagnosis During the Holidays

If the holidays are the first time you'll be seeing family members since your diagnosis, you may feel self-conscious or nervous about dampening the festive mood by talking about your condition.

Think in advance about how much or how little you want your illness to be the focus of attention, advises Rosalind Kalb, PhD, director of the professional resource center at the National Multiple Sclerosis Society in New York City. "If it's very little, prepare a script with a clear, concise message."

For example, you might say: "My doctor has said that I have X, Y, Z disease. We are working together to find the best treatment for me. My challenges at the moment are X, Y, and Z. Thanks for your offers of help. I'll be sure to let you know if I need anything. I really appreciate your concern."

This proactive approach can help put others at ease, Dr. Kalb says. "If you are comfortable sharing more, you can describe the symptoms, explaining that some are more visible than others. In any case, I suggest being prepared to answer questions about your condition, and remind people that the disease doesn't behave exactly the same in every person."

The best way to avoid self-consciousness and being the center of attention, Dr. Kalb says, is to "ask the family members how they are doing and what's going on in their lives."