Neuro Note: Ray's ALS Journey

Ray is a nurse, husband, dad, bicycle enthusiast who was recently diagnosed with ALS. He has a blog, full of humor and sarcasm that is dedicated to telling his story. This particular article I read was entitled One Year. It describes his first year post diagnosis. He talks about his family life, what it was like to tell everyone that he had ALS, and the changes he experienced in the first year.

A couple things I noticed when reading is that Ray is using humor to make his situation better. Immediately, I go into an OT mindset and think if that's the reason he is still doing so well. Seeing the funny side of things, keeping a positive mindset, and having a supportive family all could have impacted his ability to stay strong through this progressive disease.  I also noticed that he has had to make some drastic life changes since his diagnosis.  Ray is the epitome of an outdoorsman.  He used to love mountain climbing and would ride his bike daily.  These are both important occupations for Ray that he has come to terms with not being able to do like he used to.  One of his bucket list items was to bike from coast to coast. One cool thing that people following the blog have done is kept track of how many miles they've biked in order for Ray to "bike across the country". They've accumulated 42,000 miles so far!

My clinical takeaway from Ray's story was kind of an "ah-ha" moment for me. In class we always talk about home modifications as if anyone can do them. Well, my "ah-ha" moment is that isn't always the case. Ray lives in a 100 year old house with no bathroom on the bottom floor. He talks about how they had contractors come look but that would be a logistical nightmare with their layout and having to live there during construction. He also mentioned the option of a chair lift for the stairs, but that it was way to expensive for them. Ray and his wife talked about moving, but they raised their kids in that house and didn't want to live anywhere else.  So my take away is a pretty important one for OT.  For some situations, a textbook answer isn't always the right answer for the family.

I loved learning about Ray and getting a first hand account of his first year being diagnosed with ALS. His thoughts and attitude is something that truly inspired me.