Part 1: Ignorance Was Bliss
I felt it, then I didn’t. ~ I felt it, then I didn’t. ~ No sooner did I feel it, than I’d forget about it, because it happened so infrequently. It’s only by looking back that I am able to piece together the first few years of my symptoms.
These “feelings” started catching my attention when they became a little more frequent. By “feelings” I mean just the tweensiest, littlest feeling of imbalance.
So I asked our personal trainer if losing your balance had anything to do with menopause? She did not think so and suggested I see a doctor.
Up until this point the only doctor I ever went to or needed was a gynecologist so I found a primary doctor. She watched me walk, had me follow her pencil with my eyes, asked a few questions, told me she didn’t see anything unusual and to keep exercising.
So I did ~ I kept exercising ~ and put that baby to rest.
Despite exercising more, these “feelings” of imbalance weren’t lessening ~ they were actually increasing. I especially noticed it when moving slow, slow as in standing in a line that’s moving inches, not feet.
It wasn’t until I started falling, that I took what was happening a little more seriously. I mentioned losing my balance and falling as a result of it to two of my closest childhood friends, Col ~ a doctor and Mar ~ a nurse. Their reactions were alarming and it wasn’t long before they were pulling strings, getting me into the top Neurologists in Chicago and beyond.
At the time, “Ignorance is Bliss” was my first, middle and last name, when it came to thinking the changes I was experiencing were no big deal. Maybe my symptoms would mysteriously disappear in the same way that they mysteriously appeared. I mean, why would I think otherwise?
I was in my late 40’s, married with 2 high school aged daughters, rarely got a cold, no history of serious illnesses in my family other than the typical things that happen to parents and grandparents as they age and Empty Nesterville was right around the corner. Life was going along swimmingly ~ until it wasn’t.
And so began three years of neurology appointments, testing and waiting.
The first year of our search I was evaluated at three big hospitals in the Chicago area and at Mayo Clinic in Rochester, MN. The second and third years of our search included three more big hospitals in Chicago and a trip back to Mayo Clinic.
ALS is a diagnosis of exclusion. It’s complicated and takes time. It takes ruling out everything else before doctors give you those three awful letters.
Your initial neurological evaluation includes testing your reflexes, muscle strength, coordination, speech, swallowing and walking. Listed below are the standard tests used in testing for ALS.
EMG’s are needle tests in your muscles, looking for abnormal electric activity and picks up signs of nerve damage and muscle denervation.
Nerve Conduction Studies (NCS) measure how well your nerves carry signals and helps distinguish ALS from neuropathies.
MRI’s (Brain & Spinal Cord) help rule out tumors, MS, and spinal cord compression.
Lumbar Punctures (Spinal Taps) help rule out infections and inflammatory conditions.
Blood & Urine tests check for autoimmune diseases, thyroid problems, heavy metals and vitamin deficiencies.
Pulmonary Function Tests measure breathing strength.
Genetic Testing (if there’s family history) & Muscle Biopsy (if muscle disease is suspected) are the two tests I did not need to have done.
Repeated Clinical Exams over time. Because ALS shows progression, doctors repeat these tests to track the progression of muscle weakness in different regions of the body.
ALS is finally given as a diagnosis when both upper and lower motor neuron signs are present and are spread across different regions of the body. These signs include: stiffness, spasticity, brisk reflexes, twitching, muscle wasting and weakness. They randomly appear in no given order and in various degrees of progression making everyone’s journey unique.
About six months into the first year of our search for what ailed me, I started having to use a cane. I remember getting out of my car one day to buy flowers and the wind almost knocked me over. That was scary and a wake-up call I couldn’t ignore anymore letting me know I’m not as steady on my feet as I used to be.
I got back in my car and thought…huh? Maybe it’s time? So I drove straight to where I needed to go.
The door wasn’t even halfway open before all the charm of a DMV rushed out to greet me. Nothing says Welcome to Disabilities like a home medical supply store.
No cute displays, nothing sparkly or bedazzled, just rows and rows of medical devices and compression socks in fifty shades of beige. The only positive was I wouldn’t have to worry about any impulse shopping.
Thankfully the canes were located near the front of the store because the lump in my throat would have prevented me from asking where they were. When I tell you the selection of canes was grim, I’m being polite. Not a pretty one in the bunch so I settled for the least offensive cane then suddenly realized, I don’t even know which hand to hold it in? That’s when the dam broke.
I turned and asked the sales lady, in between sobs “Do you know which hand I’m supposed to hold this in?” She answered “No,” and kept looking at me so I quickly paid for my aluminum, leopard spotted cane and tried not to let the door hit me too hard on the way out.
How do you work with wheelchairs and oxygen tanks and not engage with your customers even a dot? C’mon, it’s not like people come in here for fun? And for the record, the standard answer is ~ you usually hold the cane in the opposite hand of your weaker leg. This supports you when that leg steps forward.
~ I’ve come a long way baby! ~ What I wouldn’t give now to only need a cane to help me walk, even an atrocious one.
Picking up a temporary aid until I was given the right medicine shouldn’t have phased me but it did. The sight of so many walkers and wheelchairs hit me like a ton of bricks and I thought, “Please God, don’t let this be a sign of things to come.” What if I need a cane or worse, forever? What if I was only at the beginning of what was happening to me?
And right on cue the sunny side of me chimed in “Stop it right now. What are the odds of having something serious when you’re healthy as a horse ~ don’t be ridiculous ~ you’re fine.”
My degree in armchair medicine convinced me I had a temporary situation happening, like a vitamin deficiency or some kind of crazy virus both of which would be an easy fix. We find out what I’m deficient in or get the antidote to my virus and then I can get my life back. Check.
My friend Mar and I watched Medical Mysteries in hopes there’d be someone like me on the show. My answer was out there somewhere but in the meantime…
I couldn’t hide ~ that all was not right in my world ~ now that I was using a cane and had foot drop. The kindness and concern of friends and neighbors that first year was overwhelming and 90% of the time lunch was included. I never ate so well in my life.
Whatever was happening Christ was right there next to me. I never had to ask ~ God, where are you? ~ because I never doubted His presence.
Faith is key. Faith in God, faith that you and your story matter, faith that trials and suffering are never in vain. Faith matters if you don’t want the tidal wave of whatever crisis you’re going through to swallow you whole.
Don’t get me wrong, I ~ pray ~ plead ~ and give God advice just like the next guy. God hears me. He hears all of us and God will give us the grace to see us through, come what may. His grace is sufficient. God is good like that.
After three long years of going round and round the neurology block, my doctor friend Col came up with a genius plan. This would be the ticket, the answer to our prayers!
What happened next ~ I never saw coming…