Navigating the risk of falls with hATTR amyloidosis

Yesterday, I took a tumble. Hands full, I hit the arm of the sofa just below my ribs, then my knee hit the floor. “Way to go, graceful,” I whispered, writhing in pain. My rescue group training from decades ago kicked in. Ribs? Kidneys? Check, check. My breathing was OK. It was probably just muscular, then. I knew to watch for bruising, though my knee was already turning purple.

Falls aren’t unusual as people get older. But hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN) adds another dimension, as my brain doesn’t seem to know where my feet are. I have to deal with wobbly walking, unsteady balance, and a constant fear of falling.

There was a time when my balance was perfect and unquestioned. My muscles were constantly making tiny, automatic adjustments that kept me extremely stable. I was a damn good rock climber. But that was half a century ago.

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I had a long talk with my muscles the other day. “Guys, what happened to you? This ‘long lunch’ deal has gone way too far.”

“Get lost, buddy, we’re retired. You’ve abused us for far too long, and there’s this amyloidosis thing. You try working through this gumminess. Stop your whining, you should try living in our shoes.” The reply came in the form of a serious twitch of pain. I thought I did live in their shoes — or they in mine.

So there you have it: Between muscle rebellion and numb hands and feet, I went down hard, dinging my left side. I must have “woken up” some of those muscles because they’re still painful. But I’m healing, and, honestly, this wasn’t my first fall.

My aids might have helped …

Even though I constantly test fate and push myself beyond what’s safe, I have gained a few helpful aids. “Stumpy” is my cane, a one-of-a-kind beauty designed for me after foot surgery a long time ago. A friend working with a trekking pole company took a lightweight Reynolds aluminum tube, made it adjustable and collapsible, added a rubber foot that left a dog-print image, and topped it with a beautiful walnut knob. Stumpy is a true treasure.

My son, and former backpacking buddy, bought me my “ATV” walking stick. Laminated birch and maple, it stands over 5 feet tall and has a nice bend for my hand. With a rubber foot, it’s tall enough for me to rest my chin on. I use “Big Stump” for trails (yes, I still try to walk easy trails) and off-roading.

Shoes are so important. My physical therapist turned me on to good, stable shoes. Mine are Altra trail runners, so they have a wide toe box and ultrawide sole, making my footprint much bigger than my size 13. (Am I Bigfoot?) When I walk now, I have a bit more confidence due to their stability, and the fit is so comfortable.

I’m most unstable at night when I need to get up and take care of my bladder, as it’s dark and I don’t have my glasses on. I have to stand up, stabilize, reach for the foot of the bed, move forward, put my left hand on the highboy, take three steps to the left, put my hand on the corner of the wall, take one step to the right, and put my other hand on the other wall corner. At this point, I have made it to the hall, which is much safer. I use my hands to guide me down the hall to the bathroom, turn on the light, and take care of business. Then I do it all in reverse.

I’m constantly thinking about maintaining three points of contact. Three is safer, two is wobbly, and, for me, one point is not doable. I touch everything. Do I use hand sanitizer? Well, sometimes, but not always. Stumpy and Big Stump are my third point of contact when I cross open spaces.

So where was all this good advice when, hands full, I went down and hit the sofa? Did I mention I was barefoot as well? Seems I broke all my rules, ignored my own advice, and crashed. It makes me feel so foolish, but did I learn a lesson? Yes, I did.

Note: Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.