My husband, John, was diagnosed with ALS in May 2017 at the age of 50. Until then, John was very healthy and showed no signs of any kind of illness, so the diagnosis left us both shocked and, obviously, quite terrified about what lay ahead. We decided we could accept the diagnosis but we would not, under any circumstances, accept the prognosis, so we chose to hit the ground running in terms of what we could do, in our power, to have some kind of impact on this insidious disease. Despite our best efforts, John’s ALS was quite progressive and we required a lot of help.
After our first ALS Clinic visit, and connecting with the ALS Society, I think “relief” described how we both felt in terms of knowing we weren’t in this alone. Shortly thereafter, we were introduced to Rob Lognon who silently and in a totally non-obtrusive way, became part of our journey and lives. The physical/tangible assistance we received through Rob and the Society was something we never could have navigated through on our own and, thankfully, we didn’t have to. They did everything in terms of supplying us with all of the equipment needed and connecting us to the right people when they didn’t have the equipment on hand. We had everything we needed to make John as comfortable and to live as dignified as humanly possible. As much as we were grateful for the physical assistance, the emotional support Rob was able to provide to both John and I is something that will never be forgotten. John was moved to tears by Rob’s absolute down-to-earth kindness, his humour, and, quite simply, his company and presence.
John and I were blessed enough to have found each other 14 years ago and our story was an amazing one of unbreakable love, humour, strength and resilience. John and I had a summer wedding planned in 2017 but, after the diagnosis, we decided to put our plans on hold. A few months later, John’s sons and my daughters spoke with us about how important it was to them that we go ahead with the wedding. We were married, in my brother’s home with 50 close friends and family around us, on December 30, 2017.
John passed away on January 18, 2020. We believe that John didn’t lose his fight with ALS … he was released from it and is finally free. ALS robbed John of so much, but it never robbed him of his courage, perseverance, humour and his amazing grace. He was a beautiful man who will be missed more than words can convey by everyone he touched. Patty Blair