9 Strategies and Life Hacks for Navigating Multiple Sclerosis (MS)

It is no secret that living with multiple sclerosis (MS) has its challenges. I always say that the symptoms of this neurological condition are present throughout the entire body, “from the top of the head to the tips of the toes and everywhere in between.” From extreme tiredness and heat sensitivity to mind impairment, the symptoms of multiple sclerosis can make routine daily tasks hard to complete.

I have learned many things from my MS patients about how they make their daily routines more manageable. Here are a few helpful life hacks that my patients have taught me, which others can use to navigate common obstacles.

Heat sensitivity

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 areas that can heat up quickly, such as our cars.

Cooling equipment, such as vests or towels, helps keep the body cool and can be found at most sporting goods stores. As do battery-powered neck and mist fans, ice packs wrapped in towels also work well.

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 tiring for someone with multiple sclerosis. Most grocery stores now offer online shopping and curbside pick-up. If you go to the grocery store alone, 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 do not have your own.

Memory

MS patients may 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 minor changes that you can make to offset memory loss:

• In a world where every website requires a username and password, apps like 1Password or LastPass keep your online passwords secure and saved in one central location. They allow you to remain cyber-secure by not reusing the same passwords on multiple websites while combining handy features like auto-filling your information once logged in.
• Some patients have found that putting their phones, keys, purses, wallets, and other commonly used personal items in the same place every day helps them avoid misplacing things. 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.

Preparation

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 relay to the doctor, and copy your appointment times onto your cell phone calendar. One trick is to mark the appointment time as 15-30 minutes earlier than it is scheduled.

I also recommend that people with MS take advantage of any software and medical applications that healthcare providers offer. These applications 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.

Home safety

Visual disturbance sometimes makes those living with MS more inclined to fall. 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 make sure hallways and bathrooms are well-lit at night.

Loss of fine motor coordination

MS patients with weakness in their hands or numbness in their fingertips may have trouble picking up small items, writing, typing, and texting. Several products are available that make completing fine motor activities easier, such as a jewelry helper accessory kit, an easy-to-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 patients use to simplify their day include a rollator walker with a seat (suitable 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.

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 time-saving tricks right for you.

The last three bits of advice or life hacks I can offer to those living with MS are as follows:

1. Establish boundaries and keep them. It is ok to say no to others if it means taking better care of yourself.
2. Ask for help when needed. People want to help but may need direction on what they can do for you.
3. Be flexible in your routines. Things may not always be easy, but being ready for challenges and adapting your approach can help you achieve the quality of life you desire.