Al’s Story

I was born in 1963 and live near Rochester, Minnesota, US.  I have seven siblings; five of us have GNEM.  One of my sisters was diagnosed first and shared the news at a family gathering. I knew immediately I likely had the same disease.  At the time, I was an electrician and had been tripping frequently and wearing out my boots from shuffling my feet when I walked.  Soon after, I started going through medical tests at Mayo Clinic (this was in 1996 & 97).  Nonaka was the term used describing our type of MD.  In 2011, each of us sent in blood samples for genetic testing to confirm our earlier diagnosis.

In 2012, I participated in the Natural History Study at the National Institute of Health (NIH).  Shortly after, I was accepted in the NIH ManNac thirty-month trial from 2015 to 2017.  In 2017 and in 2018, my wife, Lonna, and I attended the NDF conferences at UCLA California and joined the Facebook group for patients and caregivers.  During this five-to-six year period is when I finally met people (other than my siblings) with ties to GNEM, including doctors, nurses, scientist and patients from around the world.  For me , this was a great time in my life.

About a year after getting diagnosed I quit working with the electrical tools and climbing ladders and took an office job related to the same industry.  But the new job required hundreds of miles of driving, but did last for 18 years.

I have been retired for five years.  For short distances, I use AFOs and a cane.  When walking in my home, I use a walker to prevent falls.  I have an electric wheelchair for travel and longer distances.  Spending time in a swimming pool is my go-to for muscle relaxation and freedom of movement.

I glad to be part to the NDF / GNEM group and hope I can help out in our search for a cure.