The final, official diagnosis.

February 5th, 2019, is the day we got the official diagnosis.

Being diagnosed with ALS is confusing.

It is diagnosed by the use of exclusion criteria, meaning that they have to exclude all other diseases and monitor disease progression before definitively saying that someone has ALS. We sent all of the previous reports, tests, appointment notes, labs, etc., ahead of time so the MGH team had time to look all of it over. At this point, Rich had been having symptoms since about August of 2017. Not long after we arrived at MGH, the neurologist confirmed that Rich, indeed, had ALS. We were at MGH for what felt like days. Our heads were spinning, we were in shock. They sent in PT, OT, Speech, a person from the Muscular Dystrophy Association, a person from the Parenting at a Challenging Time program and probably more that I don’t even remember. We were at MGH for countless hours. I was over 7 months pregnant at the time and our son was at home with family, this very day was his “half birthday”, he was 18 months old.

We finally went home with the knowledge and statistics MGH shared, 3-5 years life expectancy, tracheostomy, g-tube, wheelchair, Hoyer lift, etc…but I glanced at the chart and it read...probable ALS. We’ve ruled out all other options, reported on disease progression, and had an EMG, were told we had this devastating and debilitating disease…but still we read probable...we were hung up on that word for a while, confused and frustrated by that word, holding on to hope that there was a chance it wasn’t true. MGH ordered a second painful EMG to confirm with their criteria, Rich had this on February 19th, 2019. The results of this further confirmed Rich’s diagnosis, but it still stated probable. You can read more about what an EMG is in this post. I don’t know when the word probable went away, but it is gone now.

Now it clearly states…ALS.

Fast forward to now, we are on a wild chase trying to figure out what caused it and in turn, figure out how to fix it. The world says there is “no cause”, it’s just random (other than the 10% of cases that are genetic- which is not so for Rich). We have been on a path of nutrition, and a variety of other holistic treatments, along with traditional medicine. Over time I will share more details of these things, but it is A LOT. I may now end all of my posts with a movie quote, tonight I will end with this! Again from our Lord of the Rings marathon, said by Gimli, “faithless is he who says farewell when the road darkens.” We believe this is not the end for us, it only marks the beginning of our journey.

We are saying "hello" to this dark road because there is no other choice.

Thank you for helping to light the way with your support.

Leah