An Update to My Ever-Changing Situation

More than likely, I now have ALS.

There’s no better way than to just say it. Add the condition to my list of health issues although this one could be the one that’s too much.

Well, June 12, 2019 was my last post. Today is September 14, 2020. I surely do have some updating to do!

(BTW I’ve forgotten almost everything about WordPress.)

To keep a long story short, the biggest health events were:

October 31, 2019, Halloween – my fistula access was infiltrated badly – when my INR has high, resulting in bleeding caused a “pseudo-aneurysm” in my forearm. This required surgery. Then, my upper arm developed hematomas, again while my INR was way-high. This resulted in two more surgeries. I was hospitalized for most of November and December.

Due to the swelling, my nerves were damaged. My left arm was useless with constant tingling and numbness in my wrist, hand, and thumb, index, middle, and half of my ring fingers (which continues to this day). This required months of Occupational Therapy – interrupted, of course, by the Covid lock-down.

Right around that time, April/May, I started developing slurred speech; a little at first (at times of talking a lot) but worsening to constant. And my swallowing ability is now affected, too: my food has to be blendered, and straws/bottles are out.

We’ve been to two neurologists and undergone a double-battery of tests which have eliminated everything but the dreaded ALS.

The diagnosis is still recent; we’re trying to get a handle on what it means for our family. My next neurologist appointment is 9/24.

I was happy to see I had a bookmark for SGS posts so I will keep updating you here.