Coping with an ALS Diagnosis

We received the final diagnosis of ALS, in mid-December by Dr. Robert Miller at the Forbes Norris ALS Clinic in San Francisco.  If you "google" Dr. Miller you will see that he is a Neurologist that has worked with ALS patients for over 30 years and is an expert in the field.  The difference between going to an ALS Clinic versus a general neurologist is dramatically different both due to the multi-disciplinary approach the clinic takes and the obvious compassion for ALS patients.

When Dr. Miller gave us the diagnosis he told us "this is the hardest time emotionally." Everything I've read from other ALS patients confirms this statement. Truthfully, I don't think I've ever felt so much grief and loss, so I guess I'd agree that this is a tremendously painful period.

It's been difficult to put it mildly and I can certainly wallow with the best of them, but I must say I become tired of myself - self pity has never been a strong suit with me or Patrick. Thankfully, Dr. Miller said that most ALS patients come out of this period and find a new normal and quality of life. Occasionally he said, some patients never come out of the lull, but he told Patrick that won't be you, because you've smiled and joked with me twice during this diagnosis.

Afterwards, Patrick and I went to lunch and he told me "I was just joking to cope."  I think that's the key - how do you cope?  Over the years we have used humor as a means of "lightning the mood" often during the difficult times. Is it a coping mechanism, absolutely, but isn't that what we need in the moment.

I will say that not everyone enjoys our sense of humor, but we share a common history and often snicker at the same things.  A few comedic moments of late:

"If you were going to win the lottery, instead of ALS couldn't you have won the 500 million?" That's my line:)

"I hope you get sick and die of Lou Gehrig's disease" - A line from the movie Ted... yes, we thought it was funny.

ROXIE, The Dog...

However, our greatest source of amusement these days is our new dog, Roxie.  She is OCD and I've never seen anything like it. She is obsessed with balls, stuffed animals and squeakers. She is our third retriever and the first that actually retrieves:) 

Many of you know that our house has many doggy rules and Roxie pushes all the boundaries; she walks on the carpet, occasionally gets on the couch and even made her way upstairs. I'm certain many of you are shocked -- yes, we tell her "no" but she has none of the "regret" our other dogs have shown.

Anyway, whatever your challenges, find the humor - life is full of lots of funny moments!

and BTW: no dogs were hurt in the making of this blog