By: Amber Peskin, Clinical Nurse Specialist
It’s no secret that living with multiple sclerosis (MS) can be quite challenging. I always say that the symptoms of this chronic neurological condition truly show throughout the entire body, from the top of the head to the tips of the toes. From extreme fatigue and heat sensitivity to cognitive impairment and gait disturbance, among many others, the symptoms of MS can make normal daily tasks very difficult to complete. Over the years, I have learned many things from my MS patients about how they make their daily routines more manageable and make life as simple as possible. Here are a few useful “life hacks” MS patients can use for some of the most common obstacles they may encounter.
1.) Heat Sensitivity - MS patients are often heat sensitive. When exposed to warm temperatures, which is inevitable in New Orleans, those living with MS may experience worsening of their neurological symptoms. Cooling equipment, such as vests or towels, are very useful to keep the body nice and cool and can be found at most sporting goods stores. Ice packs wrapped in towels also work well! The Sharper Image even has a cooling car seat cushion for $59.99!
2.) Memory - Some MS patients have difficulty with short-term memory or struggle with multi-tasking and organization. In a world where technology runs the show, we need a password for nearly everything. Apps such as oneSafe and Keeper are great because they keep all of your passwords secure and in one place. On the same note, try to put your phone, keys, purse, etc in the same place every day to eliminate wasted time looking for lost items and build a routine.
3.) Preparation - Take advantage of applications like our patient portal, MyOchsner, that allow you to access lab results, radiology reports, and office visit notes. MyOchsner is also a great way to communicate with your healthcare provider quickly. Come prepared to visits with your healthcare provider by making notes prior to the appointment. Write your appointments on the calendar in your phone or tablet, but mark the appointment time as 15-30 minutes earlier than it is actually scheduled. It's important to make the most of your time together.
4.) Fatigue - Fatigue is the most common symptom of multiple sclerosis, affecting about 80% of those who are diagnosed. Something as routine as going to the supermarket can be extremely tiring for someone with MS. Many grocery stores are now offering online shopping and curbside pick-up. If you do go to the grocery store on your own, ask your healthcare provider to fill out a DMV form that will allow you to get a handicapped tag or license plate. Be sure to take advantage of the scooters available at most stores if you don't have your own.
5.) Home Safety - Gait and visual disturbance sometimes make people living with MS more prone to falls. Safeguard the home and tape/velcro down rugs, put corner protectors on sharp-edge furniture and a non-slip bath mat outside of the tub or shower, and make sure hallways and bathrooms are well-lit at night. Motion sensor LED lights are easy to install and can be found on Amazon for $15-25 for a pack of 3.
6.) Loss of Fine Motor Coordination -Trouble picking up small items, writing, typing and texting can be difficult for MS patients who have weakness in their hands or numbness in their fingertips. There are a lot of available products that can make doing fine motor activities much easier, such as a jewelry helper accessory kit, an easy reach grabber tool, and kitchen utensils with rubber grip handles. Enlarging the font on your phone can make texting easier.
Other equipment or tricks that I've seen my own patients use to simplify their day include a rollator walker with a seat (good for sitting or carrying items), grab bars for the shower or bath, raised toilet seats, shower chairs, shoe helpers (makes putting on shoes easier), and lift chairs among many, many others.
To learn more about living with MS join us at The 2016 Bayou Multiple Sclerosis (MS) Health and Wellness Fair on Saturday, September 24, 2016, 8:00 AM – 2:00 PM at St. Martin’s Episcopal School 225 Green Acres Rd. Metairie, LA 70003. To find out more about the event, please visit www.ochsner.org/MSfair.