I am Marie Hensel
a family member of someone we've lost to ALS
Minnesota
Watching how my once vivacious mom suffered with this disease that took everything from her was devastating. This disease is beyond cruel.
My mom was officially diagnosed in April 2020 and this cruel disease took her from us on her 64th birthday on March 7, 2021. She started noticing strange symptoms in the beginning of 2019, sensations in her lower legs that she said felt like popcorn. At first she thought maybe she had worn heels for too long or worked out too hard. Then that popcorn feeling started moving up her body.
By the summer of 2019, she was having a lot of constipation issues. In November of 2019, she started slurring her words. She made an appointment at the Mayo Clinic in Rochester in January 2020. After a battery of tests they couldn’t conclusively diagnose her with ALS as they felt her symptoms were too mild even though at this point her ability to speak was rapidly diminishing.
My mom was brilliant, one of the smartest people I have ever known. She went back to school when I was a kid to earn her bachelor’s degree to become a financial planner, earning many accreditations and building a very successful practice all while raising three kids. My mom was a planner in every sense of the word. She moved through life like she knew she didn’t have much time. We always called her the Energizer Bunny. So it wasn’t a surprise to us that she wasn’t going to just sit around and wait for an official ALS diagnosis.
She proactively recorded her voice as she knew she was losing it. She contacted the ALS Association to find out what steps she should be taking and what to do next. She made an appointment with an ALS Association recommended provider in her hometown of Duluth, MN. Due to the pandemic, she was not able to get in until April and that’s when she got her official diagnosis of ALS.
The pandemic made it challenging to be able to do all of the things we wanted to do with her while she was still able but we soaked up as much time together as we could. We also experienced first hand the challenges of working with Social Security for determination of disability and waiting periods for her long term disability benefits to begin. We were grateful that my mom could afford to pay for the majority of her care/needs but it was frustrating to think of others with ALS who couldn’t afford these things on their own.
Watching how my once vivacious mom suffered with this disease that took everything from her was devastating. This disease is beyond cruel.
My mom was my friend, advocate, supporter and best mom and grandma anyone could ask for. I miss her everyday and I pray for a cure so that no one else has to suffer like she did.
