For ALS Awareness Month, we asked members of the Les Turner ALS Foundation’s Support Services Committee to help us explore topics in ALS that people should know more about.
For the second week of May, we’re looking at diagnostic delays, which are all too common with ALS. In this essay and video, Elizabeth Kennedy talks about what her mother experienced on the way to a diagnosis.
My mom’s diagnosis broke my heart.
She knocked on my front door and immediately broke into tears. I reached out and gave her a strong hug. She was dressed as her normal cheery self with a brightly colored ruffled skirt and a bright pink shirt. Her face was more red than normal due to all of her tears in the last 24 hours. We sat together on the couch and she told me her diagnosis was 3 little letters that would change everything. Mom had just been diagnosed with ALS.
Her journey started about 5 months earlier. My mom got into the car to run a few errands. She immediately came back into the house to tell my dad that there was something wrong with the car. She was unable to turn the key in the ignition. Dad went out to investigate. The problem was not with the car.
A few weeks later Mom complained about not being able to click the top of a pen. She kept her upbeat, bubbly personality and joked about how her thumb must be suffering from old age. We convinced her to see a doctor to be on the safe side and get things checked out.
She made an appointment with her GP, a doctor she trusted and had been seeing since I was a child. The GP was unable to give her a diagnosis and she was referred to a neurologist. Mom lived in Central Illinois. There were not many neurologists to choose from. She went to the one she was able to see the quickest.
After running many tests, the neurologist suspected a pinched nerve. There was no treatment plan prescribed and Mom was then referred to a hand specialist who suspected that she had carpal tunnel and recommended surgery. Mom was leaning toward getting wrist surgery when she received a call from the Mayo Clinic urging her to come up for testing ASAP. Without my mom’s knowledge, her GP put in a call to the Mayo Clinic; she suspected ALS but had not felt confident diagnosing it.
Mom and Dad packed up the car and drove 6 and a half hours to the Mayo Clinic for a week of testing. Throughout that week, we talked every day and she was getting more and more frustrated that she was undergoing so many tests and still did not have a diagnosis. On the evening of the 5th night, I got a call from my dad. He did not want to share any details but wanted to stop by my house on the way home. I knew something was wrong for two reasons. One: My house is not “on the way,” and two: I could hear my mom crying in the background (actually, make that sobbing). I called back a few times… no answer.
My mind was racing. It had to be the worst possible diagnosis. That night and the 1st part of the next day, I was inconsolable. I just knew it: my mom, my best friend, must have been diagnosed with a terminal brain tumor. When she arrived at my door and sat me down to share her diagnosis, you may be shocked by my response.
When she told me she had ALS, I felt a sense of relief. I was relieved that my worst fear of a brain tumor was not correct! I had heard about ALS but did not really know what it was. Then… she explained to me what ALS was and I realized that her diagnosis was actually worse than the brain tumor I feared. Mom was slowly going to become completely paralysed until complications from the disease took her life.
When I think about the fact that three doctors saw my mom and never once mentioned the possibility of ALS, it makes me wonder what might have happened if she had not received the diagnosis from the Mayo Clinic? Would she have undergone needless surgery? Would she have suffered through multiple surgeries, treatments, and interventions and been repeatedly disappointed that none had helped?
I share this story because I hope someday, when others receive an ALS diagnosis, they will feel hope instead of despair, or at the very least, they will be in the hands of those in the medical community who know how best to care for them.
