|Florian Thomas, M.D.|
ST. LOUIS – Planning is part of the fun of this time of year. Your holiday checklist may include gift buying, cookie baking, card writing, invitation sending and travel booking. If you or someone in your family has multiple sclerosis, there’s one more thing to add to the list: Don’t let your symptoms get worse.
Though it can be a challenge, making plans to manage holiday demands while pacing oneself sets the stage for an enjoyable season, and is a special gift between family members in its own right.
While stress, travel, increased demands on daily routines, and changes of schedule are not likely to trigger a relapse, they can make symptoms worse and that can put a damper on the festivities. Planning and anticipation can make a difference, but to be successful, you’ll need to enlist the help of your family.
Florian Thomas, M.D., professor of neurology at Saint Louis University and a SLUCare neurologist, offers the following suggestions as strategies to keep MS symptoms in check.
How to manage expectations:
You: The first key to a successful season is to set realistic expectations. Take an honest look at your limits and assess how much you’re likely to be able to do. Rather than trying to do everything, identify those traditions that are most important to you, and prioritize them.
Your Family: Make sure to adjust your expectations as well. Instead of comparing the festivities to those in the past, focus on the possibilities for this year. If, for example, your loved one with MS was the main chef but can no longer prepare the whole meal, consider helping that person make one signature dish or encourage some well-deserved pampering by letting other people do the cooking, allowing new culinary talent in the family to emerge.
How to manage communications:
You: Communication is key. Remember that your family can’t always tell how you’re feeling. As you know many symptoms of MS are invisible such as fatigue, heat intolerance, and trouble multi-tasking. Make an effort to tell folks how you’re doing and accept help, and you’re likely to see it pay off. Rather than finding yourself left out of activities, this communication is likely to encourage your family to make accommodations so that you can participate. If your family gathering includes people you haven’t seen in awhile, it’s doubly important to voice your current needs. Don’t insist that your family rule out any activities that you can’t participate in, but do let them know which traditions mean the most to you.
Your Family: Encourage your family member with MS to let you know how they are doing. Sometimes, fixes are very simple. For example, if a family member has eye problems, a simple change of seats may allow them to watch the kids open presents from a new vantage point. Be sure your loved one knows that it is important to you to make any adjustments, big or small, that can help them enjoy and remain a full part of the festivities.
How to pace oneself:
You: Fatigue can plague everyone this time of year, and with MS, pushing yourself can be a problem. When there is a big slate of things to do, prioritize, letting things at the bottom of the list go if you run out of time. Set a timer to remind yourself to take a rest. Often a brief nap will restore energy for a person with MS. Enlist help. Remember, it’s okay to sit some things out. In fact, by pacing yourself and articulating your priorities, you are less likely to miss the events you really care about because you’ve already overdone it.
Your Family: Honor efforts by your loved one to conserve their energy; it can be hard for people to admit they can’t do as much as they used to, and it isn’t always the best advice to “power through.”
Make sure you know the family traditions that are most important to your family member, like cooking, opening presents together or decorating the house. While your loved one may not be able to participate in every activity, make accommodations so that they can participate in those that they value most. For example, if they need to take a rest just as you were about to open presents, consider adjusting the schedule so that they won’t miss the event.
How to manage travel:
You: Travel can disrupt sleep, eating, self care, and medication schedules. Air or ground travel may require special planning to have bathroom access as often as you need it. Arrange to have letters from your doctor if you take injection medications to show to TSA agents. If possible, pack your medication in hand luggage to make sure it arrives with you. Sometimes, wheelchairs can become damaged during travel, so research wheelchair rental at your destination as a backup.
Your Family: Allow for extra time if you are traveling with a family member with MS. Also, this time of year can be icy or snowy – help make sure your family member gets between buildings and cars safely.
How to manage routines:
You: The bustle of the holiday season means disruptions to regular routines, and this can mean trouble when it comes to neurological symptoms. Changes to your sleeping patterns, overeating, and drinking alcohol can pave the way to problems. Remember that alcohol can interact with medication; taken together with muscle relaxers, it can make coordination and fatigue worse. Overeating over the holidays can lead to weight gain, which will make dealing with MS symptoms more difficult. Altering your sleep schedule can cause symptoms to worsen, as well.
Your Family: The best thing for your loved one is to maintain their lifestyle as steadily as possible. Ask them what time they usually get up, go to bed and eat. Make sure you have some of the foods they normally eat on hand, as an alternative to the rich holiday foods.
How to manage emotions:
You: The holidays can be an emotional time for everyone, and those emotions can be particularly intense with MS. Sometime forced laughing or crying – emotional incontinence – can occur with something as simple as seeing a beautiful Christmas dinner laid out on the table. The key, Thomas says, is to educate your family about what is happening.
Your Family: Forced laughing or crying by your loved one can be surprising and difficult to interpret. Thomas describes this neurological response as similar to the exaggerated reflex many people with MS have. The emotion could be positive or negative, and it reflects interruption of nerve fibers that control emotional expression. If a family member experiences inappropriate laughing, for example, just keep in mind that it is an involuntary reflex.
How to manage heat sensitivity:
You: Symptoms of MS often get worse it gets hot outside or inside, though people recover when they cool down. Explain to your family that keeping the house too warm can be difficult for you so that they can make adjustments. And, remember to don your cooling vests.
Your Family: Keep the house cool and bring a sweater.
How to manage logistics:
You: Because MS can cause difficulty with coordination, recognize your limitations and let your family know, for example, that the adorable dog running around everyone’s feet in excitement makes you nervous that you’ll trip. If you like to cook, but are unsteady by the stove, struggle with chopping or have numbness in your hands that makes handling hot dishes dangerous, instead volunteer to read the recipe out loud to your helpers, handing out orders to the others.
Your Family: Multiple sclerosis can cause difficulty with multitasking and mobility. A new environment, like a family member’s home, can be challenging; walking from one room to another while talking with relatives and playing with small children can be difficult. To avoid falls, consider mobility issues ahead of time. Move rugs or clutter that may trip your loved one.
Try to keep the party centered in the room where your loved one is sitting, and don’t leave them sitting alone if the crowd moves to another location.
“Though you can’t control everything that happens, planning, communication and awareness go a long way to a wonderful holiday season,” Thomas said.
Established in 1836, Saint Louis University School of Medicine has the distinction of awarding the first medical degree west of the Mississippi River. The school educates physicians and biomedical scientists, conducts medical research, and provides health care on a local, national and international level. Research at the school seeks new cures and treatments in five key areas: cancer, liver disease, heart/lung disease, aging and brain disease, and infectious diseases.
SLUCare Physician Group is the academic medical practice of Saint Louis University, with more than 500 health care providers and 1,200 staff members in hospitals and medical offices throughout the St. Louis region. SLUCare physicians are among the most highly trained in their fields — more than 50 specialties in all — and are national and international experts, renowned for research and innovations in medicine.