I am Marilyn Sanford

living with ALS

I never would have imagined that I’d be diagnosed with such a terminal disease and still continue on with my life as best I could.

I was diagnosed in 2008 at the age of 66. Looking back, I had exhibited symptoms in 2007 or earlier. I had retired a few years prior, after a long career in human resource management that included positions in the fields of health care, the federal government, higher education (Northeastern University), and high technology (the former Digital Equipment Corporation). Rather than slow down and enjoy retirement, I started a second career in tax and financial planning. I became an IRS enrolled agent (EA), earned a certificate in financial planning, and obtained my securities and insurance licenses. I started my own business as a tax and financial advisor (Ames Hill Tax Services) and also began teaching undergraduate courses in finance, accounting and investments as an adjunct instructor at several local colleges and universities. 

I definitely noticed a change in 2007 when I experienced a number of falls (for no apparent reason), culminating in a fall while on vacation in Florida in which I fractured my left wrist. Upon returning home, I scheduled appointments with several specialists to have my legs checked out. After a series of neurological tests, I received a diagnosis of ALS at the Lahey Clinic in July 2008. I wasn’t completely stunned, as I had done a lot of Internet research on diseases with symptoms similar to mine. I had gradually eliminated them one by one as each test result came back negative. However, like all people with ALS, I was hoping against hope that my suspicions would prove false. The one thing that kept going through my mind in the days following my diagnosis was that my life as I knew it would soon be over.


In 2009, after learning that the average lifespan of people with ALS was 3–5 years after diagnosis, my husband and I decided to sell our home of 36 years rather than modify it. Fortunately, they were in the process of building a luxury apartment complex on a hill in town, and we were able to move into a brand new handicapped-accessible apartment, complete with a roll-in shower, overlooking a pond complete with wildlife. 


By 2010 I was no longer able to walk at all, and I had to rely solely on a power/manual wheelchair, as well as a scooter. Although confined to a wheelchair, I still maintain my active tax practice, preparing individual, corporate, and trust tax returns as well as representing my clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and was hired as an online instructor at the University of Phoenix, where I’ve been teaching personal financial planning since 2010. At this point in time, after living with the disease for eight years, only my legs are affected. Thankfully, I still maintain my upper body strength, and my ability to speak, swallow, breathe, etc., remains completely normal. Somehow, I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I continually strive to maintain, and the fact that I keep very busy with my family, clients, students, online CPE seminars (to maintain my professional licenses) and ALS fundraising walks.


We’ve done some travelling since I’ve been unable to walk, but nothing extensive in the last couple of years. Our last long-distance trip was to Las Vegas, the Grand Canyon and several other national parks such as Bryce and Zion. At the time, however, I was still able to transfer, with my arms, from my wheelchair into the passenger seat of our van. Now, since my legs are completely useless, a handicapped van is a necessity. We hope to go to Austin, Texas, in October for my niece and godchild’s wedding. We’ve found travelling is a lot easier if you call ahead to the airlines. Reserving a wheelchair or a power chair at each destination makes things a lot easier. And, it’s of the utmost importance when making hotel reservations to specify a “wheelchair accessible” room, not just one that’s “handicapped accessible.” (A motel that has a roll-in shower is the best!) Also, contacting local ALS organizations in the areas you plan to visit can be very beneficial. They can direct you to rental agencies, or better yet lend you the mobility equipment you’ll need while you’re there.


A few years ago, I decided to become involved in ALS advocacy with the Massachusetts Chapter of The ALS Association. I was invited to speak to groups of scientists at Biogen in Cambridge, Massachusetts, on the topic of living with ALS, and I was interviewed by the Boston Globe and WBUR radio when Biogen discontinued the Dexpramipexole trials. I attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, Florida, in October of 2011. There I was fortunate to personally meet many fellow patients with ALS from around the U.S., as well as prominent researchers and clinicians engaged in the fight against ALS. 


In addition, I’ve spoken to groups at various fundraising events sponsored by organizations such as The ALS Association, the ALS Therapy Development Institute (ALSTDI), etc. and I’ve represented these organizations at ALS awareness events at Fenway Park. Because of my visibility as a person with ALS, I was elected to the board of directors of The ALS Association’s Mass chapter in 2013, and I served as secretary and then treasurer until we moved to Florida in 2018.


I think the first and foremost thing I’ve learned is that the human spirit is more resilient than we think. I never would have imagined that I’d be diagnosed with such a terminal disease and still continue on with my life as best I could, finding pleasure in simple daily activities. We had traveled extensively around the world in the early years of our 47-year marriage (lived in Hong Kong for two years) and planned to travel internationally once we retired and our daughter embarked on a career of her own. Now I appreciate just being able to get into our van and take local day trips with my husband. Never mind viewing the Taj Mahal by moonlight — now an excursion to the grocery store or taking in a local college hockey game is a welcome diversion and takes some planning.

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