How Does ALS Affect My Life?

This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter, ALS patients, families and caregivers, and members of congress representing the state of Ohio. 

Nora Kelly

My mom was diagnosed with advanced stage sporadic ALS last November. She passed away approximately five months after receiving her diagnosis. I would like to begin by thanking our local ALS chapter for their support and guidance in helping us navigate her fight against ALS.

What began over a year ago was her quest to find answers to her “floppy foot,” which was the initial symptom. With no family history of the disease, she spent over a year going to doctor appointments, actively searching for answers. She was determined to get her life back, visiting her PCP multiple times and seeking answers from several neurologists. She was told it was due to a nerve compression in her spine and untreated scoliosis, was scheduled for surgery, and she was hopeful. She endured the surgery and subsequent rehab isolated from her family, but, unbeknownst to her, she was entering a battle for which she was not given the ammunition. We need to do better. ALS patients deserve better.

Due to her diagnosis with advanced stage ALS, she was unable to participate in clinical trials. Providing more funding to create more opportunities for clinical trials, including trials for all stages of ALS, is essential. My Mom would have participated in any type of trials that might stop or slow the progression of her condition, anything that could provide some kind of hope for her.

My mom, like most ALS patients had been healthy her whole life, and she faced the news of her ALS diagnosis courageously. She fought to the best of her ability, at 79 years of age, against this brutal disease but also had to contend with the denial of services by Medicare that were so needed, such as PT, OT, speech, and respiratory therapy. CMS determined that she would not benefit from these services, although fiercely advocated by ALS specialists. She deserved every tool available to fight this disease and to be given the appropriate equipment in her arsenal. She was so much more than her member ID. Her mind remained unchanged during all of this as
she gave witness to what ALS was doing to her body. She was unable to talk, hug her family, cry, or even scream over the frustration of it all. There is nothing more heartbreaking. 

Our family was also faced with the costs of providing 24 hour care to meet the needs of her rapidly declining health. I applied for grants and assistance where I could, but the financial costs, even with her long-term care insurance, could not keep up with the overwhelming burden. The cost of bringing in aides to help with her care in her last few months cost $35,000. For many families, covering these types of medically necessary costs is problematic, as these are unforeseeable circumstances that are difficult to plan for in retirement or at any point during one’s lifetime.

I also feel that ALS needs to be recognized as a reportable disease. This disease, which has been around for more than 80 years, can strike anyone, at any time. Case counts fluctuate and more funding to help the ALS Registry house this information in a central database will help with research as to possible causes or links to triggers with this disease.

How does ALS affect my life? It took away an irreplaceable part of my light, laughter, joy, and a piece of my heart. Her case can never be an example of what others should go through. We have the doctors, the services, and the specialists available to make ALS a livable disease by 2030. What we are missing is funding for research, awareness, educating and training for PCP’s, treatments, and insurance benefits to aid those in their battle. My mom was not given a fair fight, she had more to contribute, more love to share, and more people to inspire. Please use our story so that no other family has to endure what we did, helplessly watching a loved one succumb to this cruel disease, especially in a matter of months. I, personally, will do whatever it takes, as her fight is now my fight. ALS might have won in her battle, but I am now her voice and I will fiercely advocate and continue the fight against this disease for her and others.

Thank you for your time and providing me with the opportunity to speak with you today.

Author Information:

Jennifer Bernay, a member of The ALS Association Northern Ohio Chapter

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