Diagnosis ALS

My first symptoms started in early November 2013, just after I got my annual flu shot at work on my Anniversary, 10/24.  I woke up one morning, and my speech was slurred and I noticed muscle spasms in my face and neck at night when I was sleeping or waking. 

I thought it was related to my stress at work and maybe the flu shot.  I told my doctor as much.  We decided to wait and see if it cleared up.  I started googling slurred speech and its causes and found lots of things  it could be, but I never figured it would be ALS.  I didn't know that ALS has a form called Bulbar, that tends to start above the shoulders.  I just learned that about 1/3 of ALS diagnoses start this way, the other 2/3 start in lower limbs like arms, hands and legs.

Of course I procrastinated going to see the doctor.  I'm a mutt of Norwegian and English/Irish descent, so I am stubborn and hardheaded - just ask my wife Kim or my family.  I have the usual stubborn streak for a Knudson - a mile wide and a mile deep.  We were dealing with my father-in-law's nursing home stay and driving to State College from Mechanicsburg every weekend to help with Bill Harris at Hearthside and Jean at home and had been for 16 months at that point.  Work was crazy, lots of projects, some that needed to be done by year end, and lots of hours on weekday evenings and weekends. 

I saw my doctor again before our week in Jamaica with family and friends at an all inclusive resort.  We agreed that if my relaxation didn't fix my problem that we would go the next step and refer me to a neurologist.  I though at first it was better during the early part of the week, but it was back and getting worse again by week end.  I went back to Dr. Young the following week and he gave me a neurology referral.

Dr. Young sent me to a very good neurologist at the new PinnacleHealth West Shore Campus, Dr. Liana Laza.  Dr. Laza told me that based on my symptoms she thought I could have the Bulbar form of the disease.  She helped prepare me for the eventual diagnosis so that confirmation wasn't as difficult as it might otherwise have been.  Three weeks after my initial visit, I went back to Dr. Laza for an EMG test.  The lower portion of my body was good, but she couldn't get a reading with the electrode on my partially paralyzed tongue.  So, a referral to Hershey Med Center and the Neurological Center, which also has an ALS Clinic.

I saw Dr. Velazquez (de Espana) and Dr. Simmons Thursday morning 5/8 for over an hour.  They ordered blood tests across the street and asked me to come back at 12:15 for another EMG test.  This one was conclusive, and they diagnosed Bulbar ALS based on the fasciculations they saw on the EMG machine.  A fasciculation is a non-normal electrical response from the nervous system, a misfiring, if you will.

Seven months later, work hasn't slowed down much, if any.  I have about 7 different projects/initiatives I am involved in between 4 different clients and have been spending three to four days a week onsite at PennDOT since February with a project that has to be completed in June so that the Department can submit their annual mileage and roadway information to FHWA.

I am a workaholic.  I admit it.  I have lived to work instead of working to LIVE.  That changed last week on Thursday when I was diagnosed with Bulbar ALS.  While things are still crazy for the moment, I have to make time for myself, my loving wife Kim, my family, and my friends.  That means making lots of plans immediately for the next 2 years and making lots of lasting memories for the rough days that will be ahead - both for me and my family and friends. 

I have a positive outlook, and I think I am a strong man, but my faith, my body, my patience, and my loves, family, and friends will likely be tested in the years to come.

Next: Speech Pathologist on Wednesday morning this week.