What ALS Looks Like

June 15, 2014 Blog

My father Kurt was a jovial man. Quick to joke and laugh — his disease did not define him.

ALS (Lou Gehrig’s) is a progressive neurodegenerative disease that causes atrophy of the muscles robbing its host of fine motor skills at first and completely incapacitating them long term. Kurt battled ALS for just under two years. Through this time he taught me many things; compassion, empathy, and suffering well. His take on life was to make your own way, never to burden anyone else — work hard, provide for your family relentlessly, live quietly, enjoy the simple things. He aligned himself with this mindset, continuing to go to work up until 3 weeks before he passed. This was Kurt’s way, this was his strong character.

The following photos communicate a more solemn message of time spent at home. Kurt’s will was to always be involved and he did so with strength, love, and reliance on his faith in Christ. I hope that by sharing these photos with you, you may understand the harsh reality of what ALS truly is: a disease with out physical pain, but not with out struggle. May you make time to love your family today, make any amends, and walk through hardships together. Nothing is more important than loving and caring for others.

This was and will continue to be the life of Kurt.

Please listen to some conversation I had with my father as you look at the images. The recording was made three months before the photographs, but describes a normal day and what Kurt was thankful for.

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (3)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (2)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (4)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (5)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (6)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (7)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (8)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (9)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (10)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (11)

ALS - Lou Gehrigs Disease - Photojournalism - Story - Kurt Nenstiel - Seth Nenstiel (12)