In memory of Julie Suarez

“Imagine buying a brand-new house but without any of the excitement because it represents one of the most awful diseases on the planet. And while you are out looking for houses, your legs give out and you break your tibia and fibula. ALS did all that for me. And that was just the start.”

My name is Julie Suarez. I was the Operations Manager at Michael Franco Inc., a small federal contractor. I just medically retired from a job I loved to go on Social Security disability.

Before ALS I was a well-respected and successful businessperson. I was very active in the community, planning and organizing trainings for the small business community that prepared them to enter the realm of government contracting. Additionally, in tangent with the SBA, I presented to retiring/exiting military members about available small business certifications.

I got married in 2013 and my husband retired after 32 years of service to our country. He tells people he married me because I reminded him of a cactus bloom in the desert, I spoke football, was able to embrace his LSU Tigers since I graduated from a woman’s university, and I had a broad selection of power tools in my garage. We traveled frequently to LSU home and away games. We had a reserved table with our friends at a small local bar. We enjoyed socializing with our family and friends. John loved teaching folks to “pinch tail and suck head” at our crawfish boils.

My ALS diagnosis came after a year of seeing every kind of doctor imaginable. I injured my ankle in summer 2018, was in a boot and after the boot noticed I was still limping. In November, my orthopedist gave me a shot in my knee to reduce swelling as I was traveling that weekend. I fell and broke my shoulder in November of 2018. I am not a clumsy person. During a multi-state business trip my limping was so bad, I had to get a wheelchair or risk missing my flight. I was mortified and in tears. The next week, at a training, I fell again because I kept stubbing my left foot. That day I started my search for answers.

I went to my chiropractor and asked him to check my gait. We went to the hallway and both chiropractors said I had drop foot. He ordered an MRI, called a different orthopedist, and scheduled an appointment. Orthopedic doctor referred me to a podiatrist who referred me to a neurosurgeon who referred me to another orthopedist. Orthopedist number three did an EMG of my legs that was inconclusive and referred me to a neurologist. Neurologist diagnosed me with Guillain Barre syndrome.

I had contacted the Mayo Clinic in Scottsdale and they scheduled me for October 21 – 24, 2019. On my mom’s birthday I was diagnosed with ALS. Thank God I did not have to tell my deceased parents. Telling my older siblings that their baby sister had ALS was gut wrenching. Telling my stepdaughters, nieces, nephews, our family and close friends was difficult.

We knew we could not stay in the house I had owned for over 20 years because we needed to find a more ALS friendly home. While out looking for homes my legs gave out and I broke my tibia and fibula resulting in my first surgery. Surgery number two was equally as bad and left me with two screws sticking out of my ankle resulting in a successful surgery number three with a different surgeon. From May 2020 through August 2020, I was only allowed to bear weight on one leg. I went from walking with a cane and AFO’s to a wheelchair with the ability to transfer, bathe and dress myself to a scooter to now being in a power wheelchair. As if that was not enough, I got covid in May 2022 and spent 6 days in ICU and now must use my bipap throughout the day. Both falls and illness accelerate ALS.

Now I have a caregiver 8 hours a day, that we pay out of pocket, to help with cooking and personal care. I cannot cook, use our drawer microwave and since my arms started to atrophy it is more difficult to feed myself or type. My husband is a retired LTC and now works for Janus corporation. After work my husband must come home, feed the dogs, cook, cut my food, and help get me in bed.

I don’t attend the events I used to organize because it is hard physically and difficult to see pity in peoples eyes or watch them try to figure out what to say to me. It breaks my heart to not be able to travel with my husband on business or to LSU games for fear of an airline breaking my PWC. It was difficult to get over myself and throw my husband’s 60th birthday party and not be able to make the centerpieces and goody bags myself but I did! ALS sucks, medically retiring sucks, but I am determined to help educate family, friends and strangers alike with the support and guidance of I Am ALS.