Brian and Lark's Story

Brian and LarkBrian was diagnosed with ALS in November 2009. When he started having symptoms, our primary care doctor thought they were just signs of getting older, but we saw a neurologist who referred us to Dr. Lou for testing. Brian was diagnosed the same day he was tested.

Brian has bulbar ALS, which affects muscles in the face, head and neck. He’s in sales, and talking was difficult, so Dr. Lou recommended that he retire. Brian has the use of his limbs, and is self-sufficient – if anything, he takes care of me. I speak for him, because he can’t speak, but he also communicates through a voice synthesizer and by email.

Since he retired, Brian volunteers at a food bank every Friday. He has a strong faith and enjoys serving people, even though swallowing problems have eliminated his ability to eat. He stays as productive and busy as possible.

When Brian was diagnosed, Dr. Lou became our primary care doctor. It’s unusual, because he is a neurologist, but we requested it because we’re so pleased with him and his staff. They’re a team, along with the Muscular Dystrophy Association/ALS organization, and they’ve made us part of it. We’re never out of the loop, and we have never met a doctor as attentive as Dr. Lou. From the first, he and his staff listened to everything we said, and they’ve brought some calm to the situation.

Although their goal is research, the ALS team never makes Brian feel like a pincushion. We always feel that caring for us is their primary goal. Any time we call with a concern, they’re on it right away. Dr. Lou responds to Brian’s emails quickly, no matter where he is in the world. The team is just as attentive to me as to Brian, and Katie, Dr. Lou's assistant, always asks what she can do for me.

Dr. Lou encourages family to attend clinic visits, meetings and seminars so everyone is on the same page. When our sons came, he answered questions and made sure they understood everything. When we go to the clinic, Brian will walk down the hall to say hello to everyone he knows. Our team brought another patient to learn from Brian about his feeding tube, and the four of us closed the door and just talked.

Brian is very technically oriented and researches all the latest data related to ALS. Dr. Lou is never too busy to listen to what Brian finds as well as to share his own knowledge on all the latest medical experiments and technology. We are convinced that we couldn't be in better hands than with Dr. Lou and the OHSU team that supports us.