My name is Ken, and I was diagnosed with ALS in January of 2023. I had symptoms for a year and a half which included a neck surgery and 2 EMG’s before a neurologist was able to give me a definitive diagnosis. Although I knew ALS as Lou Gehrig’s disease, I knew very little else about what I have. I was told I had two to five years to live, to get my affairs in order, and, if possible, take a bucket list vacation.

My neurologist did not hold back any of the negative information concerning ALS and immediately after giving me my diagnosis started talking about food tubes, tracheostomies, wheelchairs, non-invasive ventilation, in-home hospital beds, muscle atrophy and paralysis, as well as possible time frames for progression of the disease. He also told my wife and I there was no cure and no medications that can help for any length of time. He explained that the only medications available could offer a few months of extra life at the most.

My wife (caregiver) and I learned quickly that we had to self-advocate as very few professionals in the medical field understood much about the disease. Trying to navigate our way through this maze was proving to be almost impossible! Luckily, we were watching CBS Sunday Morning show and saw Brian Wallach and his wife Sandra talking about their ALS experience as well as the nonprofit organization they had created: IamALS.org. I immediately got online and looked up the website! There was so much help offered including zoom meetings with other ALS patients, ALS mentors, connections to other websites that offered help, including Synapticure, Team Gleason, etc.

I quickly signed up for the ALS meetings and the mentor program. Without the information and education that iamALS.org offered freely (including the wonderful documentary “For Love and Life: No Ordinary Campaign”) my wife and I might still be in the dark and directionless.
The weekly ALS meetings with other pALS (people with ALS) have become my lifeline and much like an extended family. My mentor has helped me through difficult moments and without him I would never have learned to live with ALS instead of dying from it.