Life with MS

Multiple sclerosis affects individuals in the prime years of their life, making childbirth and childcare a big concern among the community. MS symptoms, such as fatigue, numbness, spasticity, and muscle weakness, can make the thought of caring for a child scary. However with some tips and modifications, it can be a safe and wonderful life experience.
 
Newborn babies can be stressful and difficult to take care of even for the most healthy and mobile of parents. When you add in symptoms that are common with multiple sclerosis, the causes for stress can multiply exponentially. For example, 90 percent of individuals with MS experience fatigue, and people with MS are two to three times more likely to report sleep disturbances leading to sleep deprivation. Yet, newborn babies require feeding every two to three hours in the first months of life, contributing to poor sleep quality and fatigue in their parents. Lack of sleep also contributes to more fatigue and higher risk of mobility issues, which can lead to falls.
 
Walking concerns and use of assistive devices – such as walkers and wheelchairs – are common in those with MS, and they make holding a baby much more difficult. Babies weigh six to 10 pounds on average at birth, making them a heavier weight than most individuals are used to carrying when walking with a cane, crutches, or walker. This can create unsafe situations for both the parent and the baby if falls and tripping were already a concern. Using a wheelchair can also make parents feel like they are unable to hold their child to comfort them. All of these concerns can seem overwhelming, but there are practical solutions that can make life with a newborn much more manageable.
 
Before the baby arrives:
 
• Prepare freezer meals that can be popped into the oven and heated with little effort. Plan a day when family and friends can come over and help you prepare several meals at a time, or make it a part of your baby shower to have guests bring their favorite frozen meal recipe. This saves time and energy and ensures you are eating appropriately to keep yourself healthy and reduce fatigue.
 
• Stock up on supplies around the home before the baby arrives. Paper products will reduce the need to stand and do dishes in the first few months. Make sure you have plenty of detergent and baby-safe cleaning products so you can reduce trips to the store at the last minute.
 
• If possible, have your partner home with you for the first several weeks. Set up a support system of neighbors and/or family who you can call if you are feeling overwhelmed or too fatigued to safely care for your baby.
 
• Try to set up baby equipment before you need it. Setting up a crib or swing can be exhausting in itself, without a screaming baby.

 

Fatigue and sleep tips
 
• The old saying “sleep when the baby sleeps” really does hold up. Newborns sleep in short increments, but they sleep for up to 18 hours a day. During naptimes, take time to catch up on some sleep yourself. Even a short one- to two-hour nap can improve thinking and mood, reducing stress and helping you cope.
 
• Make sure you and your partner take turns or set up a schedule for nighttime feedings. Have your partner wake up with the baby between 9 p.m. and 2 a.m. and you can wake from 2 a.m. to 7 a.m. Switch off feedings throughout the night. If you are breastfeeding, have your partner bring the baby to you in bed, and try nursing while lying down.
 
• Try to keep the bassinet close by so you don’t have to get up and walk in a dark room and risk falls.
 
• If standing causes fatigue, use a chair next to the changing table so you can sit while changing diapers. Portable cribs often have changing table attachments and tend to be lower, making this easier.



Mobility tips
 
• Try using a baby wrap or carrier when you are in a wheelchair so you can keep your arms and hands free and you can reduce muscle fatigue from holding the baby. Be sure to choose one that has lightweight, breathable material like mesh to avoid overheating. Look for words such as “airflow”, “breathable”, or “all weather” to ensure you and the baby don’t overheat.
 
• Choose a stroller that is sturdy and designed to avoid tipping. New strollers are made specifically to be lightweight, especially jogging strollers. Look for air-filled tires and check the weight and mechanism to fold prior to purchase.
 
• Infant car seats are not all made the same when you factor in weight. Do some research and find the lightest option available, especially because adding a baby usually doubles this weight! All new models purchased in the U.S. must pass safety inspection and heavier does not necessarily mean sturdier! Visit a baby store and try lifting the car seats. 
 
• When picking up your baby from the crib, swing, or car seat, attempt to use your legs in a squat position rather than bending at the hips to avoid back injury.
 
• Some manufacturers have developed attachments for the manual wheelchair to attach a car seat. This is a specialized service, so try to find an assistive technology provider or therapist who specializes in wheelchair modifications to be sure the set-up is safe and appropriate for you.
 
• Purchase a clip-on fan for the baby stroller and car seat. This will help you stay cool and not overheat when walking with the baby. Plan to take walks in the early morning or late in the evening to avoid overheating and over tiring.
 
Memory and organizational tips
 
• Apps for the smart phone can help you keep track of feeding schedule, wet/dry diapers, any medications, sleep schedule, and doctor’s appointments. Sync this with your partner’s phone so you are both on the same schedule.
 
• Try a backpack-type diaper bag. This will improve posture and reduce the risk of falling over to the side of the heavy diaper bag. It also frees your hands to hold the baby.
 
If you find yourself with more questions about being able to care for your newborn, find a physical or occupational therapist who specializes in MS to assist you with energy and mobility strategies. They can help you put together a plan, assess your mobility needs and build up your endurance prior to the baby’s arrival.
 
Caring for a newborn can seem daunting for any new (and even veteran) parent, especially if you have mobility or energy concerns. However, preparing ahead of time, staying organized and conserving energy can all make it safer and allow you to enjoy your beautiful new addition.