
My name is Mitch Shaver. I’m 45 years of age with a beautiful
wife, Rhonda, and two amazing children. Rhonda and I will be celebrating our
19th wedding anniversary this fall. Our son, Merick is 16 and a junior in high
school. Our daughter Mariah is 15 and a
sophomore.
My first symptom noticed was on a business trip in September, 2017. I was out
having dinner and drinks and later back at the hotel, my colleagues commented
on how drunk I was because my speech was slurred. But I remember thinking, “I’m
not drunk, you are!”, but I couldn’t get my words out correctly. In the next
month I noticed I couldn’t open plastic bottles or baggies with my left hand.
Then I developed a hyper gag reflex and fasciculation’s that ran rampant
through my left arm and left shoulder.
Now Rhonda and I are therapists. Rhonda is an occupational therapist and I’m a
physical therapist. Working in the medical field armed us with a little bit of
knowledge. We started to make list of possibilities…cervical radiculopathy or
maybe a stroke. On October 31, after trick or treating, I told my best friend I
could have a brain tumor. After a little bit more research, we realized there
was a really good possibility I had ALS.
Like most people, we made an appointment with our primary care physician. We
sat in front of her, explained the symptoms and told her we believed I possibly
had ALS. I was amazed at her response. She responded, “You don’t have ALS. There
is nothing wrong with your legs.” She referred us to the emergency room. At the
emergency room we explained the last few months of symptoms and the
progressions. They ran an EKG, blood pressure, blood work, CAT SCAN, and
urinalysis. To my amazement, the ER doctor continually asked if I had taken any
drugs. Because he explained all of my tests were negative and he could not hear
any speech change. (How would he have known if my speech changed with only
knowing me 20 minutes earlier). My next trip was to the neurologist with a
battery of tests to include EKG, XRAYS, MRI, bloodwork, physical exam and reflexes.
The neurologist explained it was unlikely ALS, but more likely a host of other
neurological conditions: MS, cervical radiculopathy, MMN and others. The next
trip was an EMG with needle placement all over my body (legs, butt, arms,
tongue, etc.) to see how my nerves were reacting.
Instead of following up with the neurologist, we did more research and pushed
to see an ALS specialist. We sat with Dr. Newman on January 30, 2018. He
examined me, tested my reflexes, looked at my fasciculation, reviewed all my
test results and confirmed our suspicion of ALS.
The first symptoms I noticed in September to the diagnosis of ALS in January
took only four months. This was unusual. Most stories I have read, people get
referred back and forth to orthopedic surgeons, a neurologist, pulmonologist,
infectious disease physician and go for years without having a diagnosis.
The average life of someone with ALS is two to five years. It is unfortunate
the medical community’s lack of knowledge of ALS. Waiting a year or two to
understand your severity or treatment of ALS could waste precious time one has
left.
I am fortunate that Rhonda and I had enough background to research my condition
and lucky that I am stubborn enough to forge my path. No matter what your
aliments are, research, advocate for knowledge in your treatment, and remember
to live each day.