Welcome to our CaringBridge website. We are using it to keep family, church community, co-workers and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Nancy and I are on a journey with ALS. Nancy has ALS but is not alone. I am with her on this journey. The ALS Association website has lot's for information for patients and care providers here: http://www.alsa.org/about-als/what-is-als.html
Nancy's symptoms began in 2014. Nancy was diagnosed with ALS in July 2016.
From 2014 through 2017, Nancy has shifted from walking to walking with a cane to walking with walker to riding a scooter and now uses a power wheelchair. Nancy has shifted from cooking almost all the meals to enjoying Brian's cooking to enjoying Brian's cooking and meals brought by neighbors and now to a mix of nutrition from a feeding tube and yummy snacks.
As of November 2017, Nancy
Uses a feeding tube for most of her nutrition and enjoys the taste and feel of a few snacks each day.
Uses a bipap/vent for most of every night, during naps and for comfort when awake hours for perhaps 18 hours/day.
Uses a power wheelchair for mobility in the house.
Nancy's speech is very low volume and most people do not understand her words. Most communication is using assistance communication devices.
Nancy and Brian are blessed with family, church, co-worker and community support.
Family are visiting, feeding us and calling with loving messages.
Our church community's motto is "We are his hands." Indeed Nancy and are are seeing God's Love in the hands and actions of our family, friends and community.
Our church community is spread geographically. But the calls, encouragement and love are amazing. Every call from Nancy's sister in the priesthood Mary Ellen bring a smile to Nancy's face.
Community support is amazing. It is way beyond the support we've heard we have heard described by any other Patients with ALS or Care provider support group. Over time community support has included visits, meals, loaner cars, rooms for guests, and assistance with shopping, dog-walking and transportation for family to/from the airport, creating an amazing flower garden and more.
Nancy and Brian's co-workers and customers are amazing. Brian is on family medical leave. Co-workers are sending meals and messages of support. Nancy has retired, but her co-instructors and students are engaged and supportive.
Nancy's ambition is to lead and nurture the community to support those in need of support for any social or medical need.