It’s no secret that living with multiple sclerosis (MS) can be challenging. I always say that the symptoms of this chronic neurological condition truly present 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, the symptoms of multiple sclerosis 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. Here are a few useful life hacks that my patients have taught me which others can use to navigate common obstacles.
Multiple sclerosis patients are often heat sensitive. When exposed to warm temperatures, those who live with MS may experience a worsening of their neurological symptoms. In places with warm climates (like here in New Orleans), MS patients should take extra care to regulate their body temperature, especially in places that can heat up quickly like cars.
Cooling equipment such as vests or towels are 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 that circulates air flow across the legs, back, and thighs to keep things cool!
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 multiple sclerosis. Many grocery stores now offer 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 Department of Motor Vehicles 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.
Some MS patients have difficulty with short-term memory loss or struggle with multi-tasking and organization. According to the National Multiple Sclerosis Society, nearly 60% of people with multiple sclerosis will experience some form of short or long-term memory loss. Here are a couple of small habitual changes that you can make to counteract memory loss:
- In a world where every website requires a username and password, apps like 1Password or LastPass keep all of your online passwords secure and saved one central location. They allow you to remain cyber secure by not reusing the same passwords on multiple websites, while also combining handy features like auto filling your information once you are logged in.
- Some of my patients have found that putting their phone, keys, purse, wallet, and other commonly used personal items in the same place every day helps them avoid misplacing things. In general, establishing a routine will eliminate wasted time spent looking for lost items and make tasks easier to recall on short notice. You can also begin leaving yourself notes and reminders using sticky pads.
Investing a little time in organizing your thoughts ahead of medical appointments will allow you to arrive prepared. Before your next appointment, write down any notes or questions that you want to make sure to relay to the doctor, and copy your appointment times onto your cell phone calendar. One clever trick is to 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!
I also recommend that people with MS take advantage of any software and medical applications that healthcare providers have which allow users to access lab results, radiology reports, and office visit notes online. At Ochsner, our patients use MyOchsner to communicate directly with the medical staff, schedule appointments, check their test results, and access their medical histories all in one place.
Comprehensive and customized care to help you manage MS symptoms. Learn more about the Ochsner Multiple Sclerosis Center.
Gait and visual disturbance sometimes make people living with MS more prone to falls. Safeguard your home by taping or using Velcro to secure rugs and put corner protectors on sharp-edge furniture. I also advise patients to purchase a non-slip bathmat and secure it outside of the tub or shower, and to 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 three.
Loss of Fine Motor Coordination
MS patients who have weakness in their hands or numbness in their fingertips may have trouble picking up small items, writing, typing and texting. There many available products that make completing 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 also 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.
We are fortunate to live in a time when useful gadgets and technology can carry a lot of organizational weight in our daily lives. Even simple changes like establishing routines or writing yourself notes can eliminate the frustration and wasted time spent trying to remember things. Find the combination of tech, tools, and timesaving tricks that’s right for you!