My ALS Journey

How Self-Advocating Through a New Technology Helps Me to Survive and Thrive

by Michael J. Robinson MD, Psychosomatic Medicine Physician, ALS Patient & Advocate, Retired Vice President, Medical Head, US & Puerto Rico at AbbVie

Few life experiences will teach you to become your own dedicated health advocate, like an ALS diagnosis. Amyotrophic lateral sclerosis (ALS) is a progressive, neurodegenerative disease that, for reasons still not well understood, destroys the nerve cells responsible for voluntary muscle movement. An ALS diagnosis is emotionally devastating as you will inevitably be forced to witness your own progressive physical decline, and there is not yet a cure. Despite ALS having an average prognosis of only 3 to 5 years, here I am nearly a decade later, not only surviving but enjoying some quality of life. I use some of the time I have been given to advocate, speak, and work on behalf of all ALS patients and the researchers who will one day find a cure. 

Like all ALS journeys, mine has been a long and arduous one. It began when I was late for a meeting and rushing toward my car when I noticed that I could not get my right leg to move as quickly as it should, feeling like I was about to trip over. As a physician, I immediately recognized the signs of a painless weakness in a leg, and I called my wife and said, "I think I have ALS." That was August of 2015; I was formally diagnosed in December of that year. The ALS symptoms in my legs gradually worked their way up my body, and I have been using a wheelchair for the past several years. My knowledge and medical literacy as a physician have been critical in navigating my ALS journey, and these advantages are now more accessible than ever for ordinary ALS patients thanks to a new technology platform called StoryMD. The platform bridges the equity gap for patients who are unequipped to advocate for their health and well-being, as I did as a physician.

The elephant in the room is the question of why my condition is progressing slowly while other ALS patients deteriorate rapidly. As a psychosomatic medicine physician, I attribute some of my slow progression to some potential psychosocial factors such as:

• Relentlessly advocating for my health
• Resilience, optimism, and trusting my gut regarding symptoms
• Love and support from friends and family
• Knowledge and personal health literacy

More than any other factor, the power of personal health advocacy and not taking a bleak diagnosis lying down is key to living with ALS. I am incredibly grateful for the time I have been given as a husband and father of two children. 

Fragmented Data Cripples the Potential of Self-Advocacy

As much as it was hard work, unbreakable persistence, and self-advocacy that got me into this position, my story with ALS is not typical. My journey in navigating such a complex disease brought me to myriad hospitals, specialists, and clinics, with a trail of data piling up in the rearview mirror. Advocating for my health has been a labyrinthine challenge of compiling, organizing, and understanding my siloed medical data that is scattered across numerous institutions, only some of whom talk to one another. Cobbling together these disparate sources of information involved an incredible amount of work, and the experience has underlined just how much we are stymying the potential of personal advocacy in relation to patient outcomes and quality of life. Having context and understanding of my condition is something that should be provided as part of my care, not something I had to labor with independently. My background as a physician obviously gave me an enormous advantage in this process, but for an ordinary ALS patient who wants to be an advocate for their own well-being, it is incredibly difficult, especially in the context of managing the day-to-day of a terminal neurodegenerative condition.

+StoryMD Health Advanced Patient Portal

A few months ago, I came across an article that resonated with my issues and validated the power of personal advocacy in transforming health. Susan Tsiaras is the wife of Alexander Tsiaras, CEO and Founder of StoryMD, a digital health technology company based in Brooklyn, and she is undergoing a breast cancer journey. Susan's story captured the frustration of navigating modern healthcare systems using impersonal patient portals that fail to provide adequate personal health literacy. The turning point for her was +StoryMD Health, which seamlessly unified and transformed her data into a holistic story she could understand and act on.

The technology performed all the heavy lifting of sourcing and interpreting Susan's medical data and curating everything she needed to know about her case and how to improve her situation. The platform guided her as she weighed chemotherapy options, introduced her to scalp cooling to preserve her hair follicles, and allowed her to track and review symptoms, emotional states, and even experiences with different healthcare providers. I was stunned by the potential that +StoryMD Health held for ALS patients like me: here was a platform that bypassed all the manual labor I had to perform to manage and understand my records, putting power and valuable time back in the patient's hands.

Nine years into my journey with ALS, I have over 150 pages worth of medical data, and after reading Susan's story, I realized that +StoryMD Health was the solution to my problem. Managing and taking charge of your health journey becomes ever more difficult as your health records get scattered across patient portals and care becomes more fractured. Complicating matters further is that when you try to import medical data from one technology to another, the source hosting the data tends to fight you and make it as hard as possible. Yet here in +StoryMD Health, every nugget of my data had been perfectly sequenced and organized on my behalf, providing a complete overview of my health. Data from reports were automatically translated into longitudinal studies, and blood panels were arranged and displayed according to their date and hospital. The gargantuan disease of ALS, so fond of intimidating patients into feeling small and powerless, was distilled into digestible information that could be acted on to help improve quality of life.

When my genetic test results were plugged into my +StoryMD Health profile, I instantly got a handy patient summary linked to longer-form content, allowing me to dig into as much detail as I desired. With one push of a button, importing my health data into +StoryMD Health provided me with readily accessible information and context. Similarly, with breathing tests for ALS patients, you have to sit down with a pulmonologist or a respiratory therapist or go to each test in the portal and try to understand how things are evolving. +StoryMD Health is integrated for you. This provides incredible value for the patient in anticipating what your needs are going to be. When it comes down to it, no one is looking out for you but yourself, so you have to be able to act in your own best interests.

My experience with ALS has made me acutely aware of the importance of personal health literacy, self-advocacy, and the missing technological link that is critical to ALS care. +StoryMD Health is what ALS patients need to help manage and understand their records, turning them from passive to active and empowered players on their health journey. As it stands, many patients feel they have no agency, given how harsh a diagnosis of ALS is. Any person suffering from ALS or a neurodegenerative disease could use this platform to create an ecosystem that they can leverage to advocate for a better tomorrow. None of this is meant to diminish the invaluable input of your medical team and treatment, but there is so much more that we patients could add to our care if only we were given the tools to achieve it. 

I am not a paid consultant or part of this company. I just wanted people to know that this technology is available to them.

CONTACT: Michael J. Robinson MD, mjrcar@icloud.com