The Diagnosis

December 10, 2012, our appointment at UCI had finally arrived.  It was a long and anxious 3 months of waiting, during which time I continued researching Jim's symptoms looking for a possible diagnosis. By now, his symptoms were primarily muscle spasms, slurred speech and muscle atrophy.  I'll never forget the day I came across ALS (Lou Gehrig's disease), during an Internet search.  I had heard of Lou Gehrig's disease before, but knew nothing about it.  I remember reading the description of the disease and thinking, oh Lord, please let it not be this.  I then remember reading the list of symptoms for ALS and my stomach dropped.  I frantically went to several different sites that talked about ALS, searching for anything that would suggest this is not what Jim had, praying I would find something that didn't match. I then kept searching for something else, anything else other than ALS, that matched his symptoms.  I finally came across a condition that can be caused by a previous neck injury, and was treatable by physical therapy or surgery.  Thank you Lord, this had to be it.  I mean, Jim did play football for years, he had crashed on his bike a year ago onto his shoulder and neck, it was the "something else" I was looking for.  I printed out the details and showed them to Jim, he was on board, this must be it.  Our plan was to walk into UCI and let them know we had found the answer (thank goodness for Google Search!).  I never mentioned what I had learned about ALS to Jim or anybody else, but deep in side, I was expecting the worse. 

The first half of Jim's appointment lasted about an hour.  The first 40 minutes he was examined by a resident, and the last 20 minutes by the doctor.  He did a few muscle strength tests, looked at his muscle spasms, his previous MRI, and then spoke the words I was praying I would never hear, "I have a strong suspicion you have ALS". I'm not sure what made him turn to me, probably the sound of my gasp, but he then says to me, "I'm sure you've done your research on this disease?", to which I reply, "yes, I have".  At that moment I knew that I knew more about Jim's devastating diagnosis than he did, and felt guilty for not having shared what I had learned about ALS with him. My break down probably said it all.  We were then told to go grab some lunch and come back in about an hour for more tests.  Not to confirm the diagnosis (there is no test that confirms ALS), but to rule out any other possibilities.

The last thing I felt like doing was eat, but we did sit down for lunch, and I tried my best to keep my composure (I failed).  We talked about anything other than ALS. I knew it wouldn't be long before Jim did some research of his own.  I just didn't have the strength to tell him the devastating details. 

The additional tests ruled out any other possibilities other than ALS, and so that is what we were left with, along with a few instructions for Jim.  1. Eat a high fat diet - it's important not to lose weight (you'll need all that storage of fat for when you can no longer swallow food)  2. Start taking the only prescribed medication for ALS, Rilutek - it can slow the progression and extend your life expectancy an average of 2-3 months.  3. If interested, sign up for the clinical trial we're offering.   4. Come back next week to meet our staff of specialists (all of which you will eventually need as your body continues to deteriorate) - the Respiratory Therapist , Speech Therapist, Physical Therapists and the Residents. 5. Sign up for Social Security Benefits right away, it can take up to 5 months to receive payment. 6. It's very easy to fall into a depression when given this type of diagnosis, but stay positive, your family is counting on you.

And with that we left, heading home to break the news to our family and friends (but not before driving through In-n-Out burger for Jim's high fat meal!)