Multiple sclerosis (MS) patients often struggle to keep track of doctor's appointments, children's school trips, and other elements of a busy, 21st-century schedule. But a new slate of digital tools can help patients with this neurological condition control the chaos and keep helpful reminders at their fingertips.
According to MS specialist Dr. Daniel Kantor, "One of the toughest symptoms for people with MS, their loved ones, and their neurologists, is memory loss. This can range from difficulty with multi-tasking and the tip-of-the-tongue phenomenon ('what’s that word I’m looking for?') to difficulty with remembering important life events."
When measuring and treating memory loss, one size doesn't necessarily fit all.
"Your neurologist may do the memory testing themselves or they may send you to a neuropsychologist...who specializes in doing hours of memory testing to help your neurologist better characterize what types of memory problems you are having [and] best figure out what part of the brain is involved," Kantor said in an interview with Healthline. "Some people do well with visual hints, and a neuropsychologist can help with making suggestions, such as using Post-It notes and reminders."
Now, with the addition of a few select applications, or “apps”, MS sufferers can quickly type—or even speak—these reminders into their cell phones.
Timely Reminders Could Save Your Life
There's no substitute for preparedness, and patients with MS know the unpredictable nature of their disease. Even those who do not suffer from memory loss can panic and forget critical information during a crisis.
In Case of Emergency, or ICE, is an app that can be used to store vital data about a patient's condition, allergies, medications and emergency contacts on his or her mobile device. First responders are trained to look for these emergency apps. Having this information organized in one place, where EMTs can easily retrieve it, can shave critical minutes off time otherwise spent sorting through a purse or a wallet—time that could be spent saving a life.
Memory loss can also impact the daily routine of taking medications. A majority of MS patients are prescribed one of a slate of disease-modifying drugs. Remembering to take their pill or perform their injection each day is necessary to ensure the efficacy of the treatment.
MediSafe, a virtual pillbox app released in November 2012, not only reminds you to take your meds, but also syncs data with your family members' devices, alerting them to missed medications so they can provide a gentle reminder as well.
“Medication adherence is a persistent and elusive problem, interrupting patients’ wellbeing, costing health providers and insurers billions annually, and causing preventable deaths,” said MediSafe Project CEO Omri ‘Bob’ Shor in a press release. “MediSafe Project’s involvement of patients’ loved ones and caretakers is proving itself a breakthrough in reducing the harm that comes from medication non-adherence.”
MediSafe reports that after eight weeks, 81 percent of its users were taking their medications on time. That’s a 31 percent jump from the World Health Organization’s estimated average medication adherence rate of only 50 percent.
Memory loss impacts other aspects of an MS sufferer’s life as well. Simply remembering their parking spot at the mall can be a daunting task.
MyCar Locator, released in December 2011, utilizes your cell phone's GPS to set coordinates when you press the “park” button. When you want to return to your car, the app will lead you back to your vehicle with a simple directional arrow and approximate distance.
Out of Milk is another daily routine essential. The app allows users to create, sort, and share shopping and to-do lists, and also displays coupons and promotions from local grocery stores.
"We have been contacted by grateful users suffering from a range of issues including cognitive memory loss, patients suffering through chemotherapy, multiple sclerosis, and more who all tell us the same thing: Out of Milk has helped them and their families manage their shopping lists and save money quickly and easily," said Paul Sheaffer, co-founder of Capigami and developer of Out of Milk in an interview with Healthline.
"One of the core features of Out of Milk is it's ability to share lists in real-time," Sheaffer added. "We've found that many users going through medical hardship use this feature to share their needs with friends or family who also use the app who can then do their shopping for them."
The apps above are all available through the Google Play store for Android phones, but there are thousands more apps in the Amazon Appstore and on iTunes to help patients take charge of their daily and long-term goals.
"We think of our memory and the way we think as what makes us uniquely human," Kantor said. "Feeling like you are not thinking as well as you used to can make you feel like you have lost something. Some people feel depressed when they've lost a piece of themselves and that's why it is so important to alert the people around you about how you are feeling and not let yourself fall into depression, Remember, you are not alone!"