As a part of Major League Baseball’s inaugural celebration of Lou Gehrig Day on June 2, Marquee Sports Network is proud to work with Project Main St. and the Chicago Cubs to share the stories of ALS heroes. These heroes have taken on the illness with strength, hope and determination – eager to raise awareness and funds so that ALS can finally be defeated. For more information on Project Main St. and to make a donation to help these heroes and others being inflicted with the disease, please visit https://projectmainst.org/about-us/.

Jackie Zamojski was in the best shape of her life in early 2018. An active 39-year-old living in Texas, Jackie loved to ski and bike, even competing in the Iceman Cometh Challenge, a 30-mile mountain bike race winding through the Pere Marquette State Forest near Traverse City, Michigan.

For Jackie, being active was incredibly important, both physically and mentally. However, within a few months in 2018, Jackie was diagnosed with limb-onset sporadic ALS, a devastating disease that has now robbed her of even the simplest activities.

Yet, Jackie remains able to communicate beautifully through an eye gaze computer, describing herself as a “grammar perfectionist.” When approached by Marquee Sports Network to share her story about fighting this deadly disease as part of coverage surrounding Major League’s Baseball inaugural Lou Gehrig Day on June 2, she was delighted to have the opportunity to share her story through email, while noting, “I tend to be wordy, so I take zero offense to edits.”

Being Jackie’s editor is an easy job though, because like promised, her grammar is perfect. So, this is her story, in her words, all done through her eyes.

On how she communicates:

I use a Tobii Dynavox I-13 “Augmentative and Alternative Communication” or “AAC” computer.  It is essentially a PC with sensors that track the movements of my eyes as a computer mouse.  It has specialized software that converts written text to speech so I can communicate with people and smart home devices.  I have an Amazon Fire TV cube that I can “talk” to and control my television and lights.

Last fall, my speech pathologist determined it was time to consider this device due to my speech deterioration and my loss of hand function. I could no longer text on my phone to communicate when my speech was not understood. I can now call or text for help using chat apps most people use on their smartphones. I stay connected with friends, family and my healthcare providers just as I did when my hands could type.

I learned the device rather quickly. I had used PCs for years, so now my eyes needed to do what my hands did without thinking. Once I got the hang of it, I started experimenting with more complex programs like Lightroom for photo editing. While it takes a little longer than before, I can do many things I did before ALS. It is with me 24 hours a day, mounted on my powerchair or on a stand that telescopes over my bed.

On what she knew about ALS prior to her diagnosis:

I knew a bit about ALS, yet it was not on my radar at all when I sought insight on the internet prior to an appointment with a neurologist for another EMG. I remember walking in feeling like I was wasting her time when there were sick people in the waiting room.  Like many people, the Ice Bucket Challenge on social media in 2014 brought renewed awareness.  Everything I had read alluded to ALS favoring older men and military veterans.  I was 39, eating healthy, taking spinning classes and skiing out west a couple times a year. I was in the best shape of my life.  I knew of people with ALS, but they were all older men. I had always assumed it was a genetically inherited disease, and there was zero ALS in my large family.  I was not prepared to hear that I had likely 3 to 5 years to live.

On the process of being diagnosed and the progression of the disease:

In early 2018, I was an active 39-year-old living in Texas and working in medical diagnostics sales. I noticed tenderness in my forearm, easily explained away as tennis elbow, that became concerning when it had progressed to hand weakness.  Struggling to grip my ski pole while skiing in Colorado, I had no idea my life was about to change dramatically only weeks after that trip.  In April, expecting I had a pinched nerve, I was shocked when my neurologist said, “you have ALS.”  Life would never be the same.

In November, I moved back home with my retired parents in Michigan. I found a multidisciplinary ALS clinic participating in clinical trials and enrolled right away.  I resigned from the job I loved in May 2019, quit driving in July and was unable to walk by winter.  I traveled as much as I could knowing time was not on my side.

I am now three years post diagnosis and am dependent on my parents for every need, communicating through a computer controlled by my eyes. I have participated in several clinical trials with the hope future patients will hear “treatable” versus “terminal.”

On the importance of raising money and awareness for ALS:

This is one of the worst diseases a person can get, and there are no light cases.  They are not sure why it happens, and it is 100% fatal.  There are two drugs available that add months, not years, and with unpleasant side effects.  The cost of care is astronomical even with best insurance.  Within 18 months of diagnosis, I could no longer walk or get myself ready for the day.  Things change rapidly and adaptive devices are needed for even the simplest activities. My home does not have first floor living quarters, so I needed a stair lift and a handicap accessible bathroom, at a cost of nearly $50,000 of my savings. Raising money is so important, as the financial impact of this disease can quickly wipe out a family’s savings.  This disease does not just affect the person, it impacts the whole family.  I am extremely fortunate to have my parents as my caregivers.  Many people hire in-home caregivers that can cost upwards of $200,000 a year and is not covered by insurance.  Fundraising is critical to providing the care and improved quality of life for these people. 

On the support she has received from Project Main St.:

The support I received from Project Main Street has helped me with ongoing medical expenses and accessible transportation rental for medical and clinical research appointments. I feel less stress knowing these needs can be met through the generosity of Project Main Street and people who support this wonderful organization. 

On what Lou Gehrig Day means, and the future of fighting ALS:

MLB shining a light on ALS and Lou Gehrig is a tremendous way to reignite awareness of the disease and progress being made in finding treatments.  I loved going to Detroit Tigers games with my dad growing up.  It is a sport that appeals to people of all ages.  ALS does not care how old you are, which team you root for or how physically fit you are. Lou Gehrig brought awareness to the world on July 4, 1939 with his speech, the most famous in baseball history.  82 years later, ALS is still swiftly fatal but promising treatments are in development and advancements have been made with communication technology. Lou probably would have enjoyed keeping up with his teammates with an eye-gaze controlled computer had this technology existed then.

While ALS has taken so much from me, I am more hopeful now, more than ever, that we are entering a time of profound discovery in ALS and other neurodegenerative diseases. I am happy to have the opportunity to help advance science by participating in several clinical trials, including the current Healey ALS Platform trial. This trial design is evaluating several drugs simultaneously while reducing cost and decreasing trial length, important when patients do not have the luxury of time.