Thump Flap: Managing ATTR and Polyneuropathy

Thump Flap…

Strange name, Thump Flap. Well, it’s a bit of a story that took a long time to happen.

First off, I have hereditary amyloidosis (hATTR). My mother’s line, the Irish one. It slows me down with low energy, shortness of breath, and a host of other effects, including stenosis of the spine. It’s a disease that many of my extended family relatives suffer and die from. Including those still in Ireland. But, so what? The reality is, everybody has something wrong with them.

It began with a major injury

So, back to Thump Flap. Let’s start with Thump. Way back in the last century, I played soccer on two men’s teams in Seattle. I was a pretty good right winger until one fateful, stormy night, under the lights and in the mud. I planted my left foot and swung to deliver the ball toward goal. It was all set. Two runners to receive and their defense out a bit. A sure bet for a goal. It didn’t happen. I heard a pop and went down. My left foot just stopped working. No pain, just dysfunction. So, I got off the field, and my left foot was just a stump, like the peg-legged pirate. I thought I’d be ok in the morning, because I always bounced back from dinging myself. The clutch in the car did prove to be a challenge though. I just pushed with my heel.

No better in the morning, just a lot of bruising. Not much pain though - very strange. The docs confirmed it. I had totally snapped my left Achilles tendon. 45 years old and the end of soccer playing for me. Surgery and physical therapy aside, it was never the same again.

It's 28 years later, and when I walk that heel strike always goes "thump," like the pirate.

What is foot drop?

Flap, well, that’s a different deal altogether. It is another ATTR symptom - foot drop. I can’t seem to keep my foot up enough not to flop. I’m not sure why it happens. I’ve worked on trying to strengthen it, but to no avail - "Flap" still happens. So, there I go - Thump-Flap, Thump-Flap… you can hear me coming. Neither foot will roll nicely, heel to toe, something I worked hard on in my running days. Part of it must be the polyneuropathy that my amyloidosis has caused.

Polyneuropathy and numbness

There is a constant numbness in my feet that never goes away. But they aren’t completely numb. I break all the doc's recommendations and love to go barefoot in the summer. And, yes, I’ve found myself bleeding with no explanation and no pain. However, the little feeling the soles of my feet still has been amplified to an almost painful level. It is a glorious pain; I know my feet are still alive and still with me. The lack of feeling in my feet has caused my brain to lose their location. They are there but yet, they aren’t. So, there goes my balance. Thump-Flap needs some help.

Using custom-built canes and walking sticks

A long time ago I had to have foot surgery. My soccer sweet spot on my right foot had developed bone spurs and osteoarthritis. So, my podiatrist went in, removed the spurs, and fused my big toe with a metal plate. Probably one of the causes of Flap. At that time, I worked for an outdoor company in Seattle and one of their product lines was walking sticks and trekking poles. My friend Pete, the stick designer, built me a custom, adjustable, collapsible, cane with a walnut nob and rubber foot. I call it “Stumpy”. So now, I venture out with Stumpy as my third leg.

Bring on Tap. Thump-Flap-Tap, Thump-Flap-Tap.

ATTR will not stop me

I Thump-Flap-Tap my way everywhere. I am progressing well with my physical therapy though Thump-Flap is still my life. Stumpy and I welcomed a much bigger cousin, Big Stumpy - my all-terrain stick for not so flat trails and the uneven hills of my home.

So, there you go, TTR Amyloidosis is not going to stop me. I keep a positive attitude, always adapt, and keep moving forward. Life is too short and too precious to succumb to this disease, and I have so much more of my life to live.