Mike was diagnosed with ALS in September 2023 and passed away in August 2024.  In 2021, Mike started experiencing symptoms in spring of 2021 when he noticed he was losing some function with his left hand.  He went to several doctors and was eventually diagnosed with four degenerative disks in his neck.  In January 2023 Mike had surgery to replace/fuse the disks.

Immediately following the surgery Mike had trouble breathing and could only lay down with the assistance of his CPAP machine.  Leaning over to tie his shoes and long periods of walking made him short of breath.  His left hand continued to worsen and he started developing a drop foot so we reached back out to the surgeon for answers.

The surgeon requested more MRIs to evaluate if there was a problem with the disks.  In the meantime, Mike was developing swelling in his hands and feet so he went to a cardiologist for testing, since he has a family history of cardiovascular disease.  During his electrocardiogram the doctor was very concerned with Mike’s labored breathing and admitted him to the ICU where it was determined he had a partially paralyzed diaphragm, most likely caused by the phrenic nerve being nicked during the disk replacement surgery.  After the MRI Mike’s oxygen level was low enough that the discharge nurse sent him to the ER to get oxygen to take home with him.

In July 2023 Mike met with the spine surgeon to go over the results of the MRI.  They could not find anything wrong and suggested he have additional nerve testing to rule out MS, Parkinson, or possibly ALS.  Gwenna had to go into mother bear mode to get Mike seen by a neurologist sooner, rather than later, and he got an appointment in August to meet with a neurologist in American Fork to have a nerve conduction test done.  After explaining everything we had already done the doctor said she wasn’t going to do the test because he needed to be seen at the University of Utah.  We had been trying to get in, but it’s a bureaucratic nightmare to even figure out where to send the referral, so the nurse kindly told us the work around and we headed to the ER.  

September 2023 we met with the Neurologist who conducted a nerve test and drew blood and determined Mike definitely had ALS. At our first visit at the ALS clinic at the U more blood was drawn to have genetic testing done.  We found out Mike’s version of ALS is a genetic mutation of the SOD1 gene. Mutations in the SOD1 gene are the second-most common cause of familial ALS, found in about 10-20% of cases, as well as 1-2% of sporadic ALS cases. Researchers have identified more than 150 different mutations in the SOD1 gene linked to ALS.

After posting his diagnosis on Facebook he found out that he has two distant cousins in England who also died from ALS.  Unfortunately, that means that our children and grandchildren could also have the SOD1 mutation and could develop ALS.

That’s why I’m walking. To change the statistics. To bring help and hope to those living with the disease. To ensure that no one ever hears the words: “You Have ALS” again.

The past two years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families.

But, we can’t stop now. The key to a cure begins with you.

Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease.