The holidays can be stressful on everyone, and especially on those with multiple sclerosis (MS). A health specialist is offering these eight suggestions to MS patients and their families as a way to enjoy this season, and to keep it as free as possible of disease flares or symptom worsening.
Increased demands on daily routines, travel, and changes of schedule are not likely to trigger an MS relapse, says Florian Thomas, MD, Professor of Neurology at Saint Louis University, in a recent news release. But such stress, especially when experienced over days or weeks, can cause symptoms to worsen. Careful planning may make all the difference:
- Set realistic expectations for the season, which involve the patient, and the patient’s family and friends, knowing when likely limits to — or risks in — the merriment.
- Be effective in communicating with family and friends. Many MS symptoms are invisible (fatigue, heat intolerance, trouble in multi-tasking), so it is important to communicate well to others how you are doing and feeling, as well as accepting help. Even minor adjustments can be of help. Dr. Thomas suggests, for example, that “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 certain to pace yourself. Dr. Thomas notes that fatigue can plague MS patients, making it important to prioritize activities. Patients could consider, for example, setting a timer as a reminder to take a restorative rest or nap. And they need to remember that it’s OK to sit some things out. Family members should identify those traditions that are most important, Dr. Thomas says, because “your loved one may not be able to participate in every activity,” but would want to “participate in those that they value most.”
- Plan travel arrangements carefully, because travel is highly disruptive — affecting everything from eating and care habits to sleep and medication schedules. MS patients should consider that ground or air travel may require special arrangements, like easy bathroom access, and they should carry with them a doctor’s letter confirming the need to use injection medications; those traveling by plane will be expected to show such letters to Transportation Security Administration (TSA) agents.
- Expect challenges in managing routines. Disruptions to regular routines can be troublesome for people with neurological symptoms, and it is important to consider the complications that may arise from changes in sleeping patterns, and alcohol and food consumption. Family members should try as best as possible to maintain an MS patient’s daily habits. “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,” says Dr. Thomas.
- The season is emotionally charged for everyone, but MS patients can experience unusually intense emotions, with sudden and forced laughing or crying at something as simple as a Christmas dinner laid out on a table. The key to keeping such displays comfortable, says Dr. Thomas, “is to educate your family about what is happening.” It is important for family and friends to keep in mind that such neurological responses are involuntary, similar to the exaggerated reflexes experienced by many MS patients.
- Manage logistics, like coordination, amid the holiday bustle by knowing your limits and taking care not to overextend yourself. As Dr. Thomas notes, “the adorable dog running around everyone’s feet in excitement [may make] 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.” And family members need to consider that a new environment — like a relative’s house — can be challenging. Consider mobility limitations ahead of time, and remove rugs or clutter. Likewise, as the party moves from one room to another, help the patient move, too.
- Heat sensitivity is an ongoing problem for MS patients. Family and friends should be told that the house should not be too warm, for example. And the patient should remember to use a cooling vest.
“Though you can’t control everything that happens, planning, communication and awareness go a long way to a wonderful holiday season,” concludes Dr. Thomas.