Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer. Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.
Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.
Late in 2004 Brian started to develop problems with his right hand and thumb. His earliest symptoms were that he could not tear sheets from a legal pad and he was dropping pills. Brian went to his primary care physician in May 2005 when his symptoms did not improve. Brian was then referred to a neurologist for evaluation. In July 2005 Brian underwent further testing at Washington University and was told that he may have ALS, which required follow-up to establish a definitive diagnosis.
I vividly remember the July day that Brian broke the news to me. It was late afternoon—a sunny, ordinary day really—and I was watching TV, waiting for Brian to return from neurological testing. I wasn’t particularly concerned that anything was seriously wrong and in fact thought his right thumb weakness was from an old high school football injury.
When Brian walked through the front door, he looked stunned. He calmly related that he could have ALS but would not know definitely for a while. I started to cry. How could he have such a devastating diagnosis? How and why did he get this terrible disease? How could this be happening when our daughter was starting college in the fall and at this stage of our lives?
Reflecting back, my first awareness of ALS was from watching The Pride of the Yankees after school as a young kid. I wasn’t particularly interested in baseball but was deeply impressed by the inspirational and courageous message of Lou Gehrig. Although I didn’t understand the first thing about ALS, Lou Gehrig’s luckiest man speech left an indelible mark on me. It seemed ironic that Brian had ALS because his favorite baseball team growing up was the Yankees, and now he shared the same disease as one of his heroes.
For the next 6 months, I read as much information as I could on ALS. The ALS Association was a wonderful resource of online information, ranging from symptoms to clinical trials and research, to caregiver resources. I was so desperate for an alternative diagnosis that I even called the St. Louis office, looking for reassurance. I constantly stared at his right arm, hand, and thumb to see if there were any visible signs of muscle wasting. After each office visit between August 2005 and February 2006, I asked Brian if the neurologist was any closer to making a definitive diagnosis. Each time Brian told me his symptoms were about the same with little change or progression, allowing me to cling to the false hope that there was another explanation for his symptoms. Despite my wishful thinking, Brian was officially diagnosed with ALS in February 2006.
How did your loved one learn of his or her diagnosis? What were the initial symptoms that brought your loved one to a physician? How did you and your loved one cope with the diagnosis? Please share your experiences in comments section and let’s continue the conversation.