One year later...

Yesterday, October 31st, marked the one year anniversary of my official ALS diagnosis.

So where am I, one year later?

First, let's flash back...

As I've written in one place or another before, the days leading up to that and following it were... challenging.

It had taken my primary care doctor nearly two years of failed attempts to diagnose or properly treat my symptoms (intermittent leg cramps and weakness, becoming gradually more persistent and worsening). It wasn't until after I had fallen on the ice during a curling club evening... losing my balance and falling backward, then bleeding profusely on the ice (you'd be surprised how much a small cut on the head can bleed!)... that the doctor, in a follow up visit, decided to "take it more seriously". An MRI and consultation from a spine specialist later showed that a spinal stenosis was NOT my problem. The spine doctor knew what it could be after less than 10 minutes examining me... but it wasn't his call to make... he set up an appointment with a neurologist. But, he told me he'd seen this before... in his own mother, who had recently passed away. Becky had to pick me up from his office, I was too distraught and distracted to do anything else but grieve. Less than a week later, we had a very somber Halloween party, dreading the upcoming neurology appointment.

Diagnosing ALS is... well, it appears to be quite... rudimentary. The first thing the neurologist said to me is that she didn't think I had ALS. She asked me a bunch of different questions about my past, my current activities and lifestyle... still skeptical. Then I changed into the infamous open-back gown for "the tests" consisting of (a) an electromyogram (EMG) where a really thin needle, about the size of a hypodermic, connected to a machine that looks like an oscilloscope, is inserted through the skin into muscles... in my case, my left calf (the test records the electrical activity of the muscles when they contract and when they're at rest. This can determine if there is a problem with the muscles or nerves) and (b) a nerve conduction test, with the same equipment, measuring nerves' ability to send impulses to muscles to determine if there is nerve damage (feedback from both is both visual, the oscilloscope, and audible, unwanted static). Well, as you can surmise, I "failed" both tests (first time I've failed a test in a LONG time). It's not a pleasant test to take... intentionally being stabbed in a muscle with a needle is bad enough, but then getting a few electrical shocks on top of it doesn't help. So, the air was immediately sucked out of the room when the doctor had to admit she was wrong... it was ALS. There are other tests you could do, like biopsies and further MRIs, but she felt those weren't necessary.

And back to the present...

It's been a struggle since then. ALS is never the same for each patient. It's very difficult for doctors, as much as the patients, to have expectations about how it will progress and the speed at which it will take its toll. In my case, it hasn't been... encouraging. I've very quickly gone from simply relying on a cane and foot brace for safety and minimal support... to needing a rollator (essentially a walker with wheels)... to requiring the use of a lightweight electric wheelchair outside the house. In addition to my legs, I experience intermittent spasms and cramps in my torso, arms, shoulders, and neck. Weakness and tremors have spread to my arms and hands. Breathing is still ok... aside from the occasional panic attacks and managing allergies. Coughing and sneezing hurts. I can still talk... eat... drink (though I can't hold my liquor as well anymore). I feel like I can't hold onto a "state" (the plateaus) for more than three or four weeks before symptoms worsen (the drops).

I'm mad. I'm scared. I'm sad. But...

I am still alive.

I can have some hope... without any magical thinking or blind religious faith (we'e been through that). I can try to keep going without surrendering total defeat (for now). I have some very tough realities and very difficult choices to make in the future (whenever that is). I can try to live in the moment, to enjoy the passing holidays and events (whatever they may be). I still have many tears to shed... but also some laughter to share. I'll do what I can, for as long as I can...

And hope for another year.