Help ALS Patient Thrive - Updated October 2023

Nearly 8 years after being diagnosed with ALS (Amyotrophic Lateral Sclerosis), my husband Ken’s evolving symptoms, that for 9 years only affected his arms has now taken his legs, too.

ALS has been a long journey for our family as symptoms first appeared in 2013 with an official diagnosis to follow in 2015. We stayed in our family home and adjusted around the nearly immediate loss of the use of his hands and arms. Neurologists thought it wouldn't progress beyond his arms and so we put down deep roots in our three story multi-generational home and included our daughter and her family to help me with Ken.

But the “2017 viral Ice Bucket Challenge” taught us that there is still a long way to go in researching a cure and understanding ALS. The first part of our gofundme has been fulfilled and some home modifications completed. Modifications include an outside lift that safely moves Ken and his wheelchair up and down the three stories ($8,000 of $10,000 raised). General modifications around the house for accessibility are still needed, especially in the bathroom. We have been recently surprised with unexpected medical and vehicle expenses ($8000). We have secured a complex wheelchair that he operates with his feet. We are so grateful for the help of friends and family!

As we navigate the red tape of the healthcare system we find that we are not eligible for home care and I may not be able to keep my quarterly job of 15 years. Ken has accompanied me (my job involves field research, driving in the car), but soon this will not be possible.

ALS (aka Lou Gehrig's disease) has already taken a lot from our family. Ken's positive attitude has never wavered. We realize he has outlived the "normal" progression of ALS (Ken likes to say he’s living past his expiration date) and we are all grateful for the extra time - to celebrate 50 years of marriage, watch our children succeed, see our grandkids come and grow and advance the love for our hobby of geocaching. Everything from the ups and downs of trial medical treatments to accessibility issues has taken its toll. We would like nothing more than to stay in our family home and not allow ALS take that piece away too.

Will you please help us achieve this dream of keeping our family home and making it accessible for Ken? Thank you for taking the time to read our story. We appreciate your help and covet your prayers.