My husband Matthew, age 63, is a wonderful father to our son Graham, a former marine surveyor, and a colon cancer surviver. He is a wise, caring and gentle soul who loves his family, friends and boating. He lives life asking for very little in return, and yes, Matt also has ALS. During the winter of 2017 we began to notice subtle changes. Matt was unable to whistle and occasionally his speech seemed slurred. By the end of September 2018 Matt was diagnosed with Early Onset Bulbar ALS. We were devastated.
It's then that we learned of the ALS Association RI Chapter and the Louise Wilcox ALS Clinic. We had so many questions and the more time I spent online researching ALS the more overwhelmed I became. Lynn from ALS RI was like an angel that appeared in our home in the late fall of 2018. She was a calming influence for us and educated and guided us through what services are available. We realized then that we were in good hands and were not alone. We had found the right people to help us navigate this disease. In January 2019, we had our first visit at the clinic. Erin from ALS RI organizes the clinic and the service she provides is invaluable. The clinic allows us to meet with all of Matt’s medical team in one place, on one day every three months. It is truly God send and so is Erin. I could go on for hours about how wonderful and dedicated Lynn and her associates are but I will just say, they are a small group that does so much for ALS patients and caregivers and without them we would all be lost.
During August 2019, Matt lost the ability to speak and swallowing became more difficult. Thankfully he is able to use an app on his iPhone to communicate. Eating and swallowing was proving to be very difficult, time consuming, and dangerous. Matt’s ALS moved to the lower portion of his body. His left hand and arm were no longer functioning and he was losing the ability to use his left leg. By summer 2020, he was beginning to lose a lot of weight and the doctors recommend a g-tube. In October of 2020 pulmonary doctor at the clinic recommends a non-invasive breathing machine because Matt's diaphragm muscles are weakening.
Since the beginning of Matt’s diagnosis with ALS, we are grateful for the outpouring of support from so many friends, families, doctors, medical personnel and the ALS RI Chapter. If it were not for this support, I think we would have given in to ALS but we have not and we will continue to fight against this disease.
My name is Linda, and as Matt says, I am his wife but I am also his ALS project manager.
~ Linda Jamison