My Life With ATTR: Asking for Help

It was just a bottle of ibuprofen, child-proofed, locked tight, of course. Press down and twist. There was my mother, pressing, twisting, banging; the frustration and rage that bottle was causing filled the air. "Let me open it," I said. It was 1998. I was 46, and my mother was 80.

"NO… when you're not here, I need to be able to do it." Then the junk drawer slid open with a violent jerk; out came the hammer. Whack, whack, whack. And that old woman had tablets flying everywhere, but the satisfied smile on her face was priceless.

ATTR and neuropathy in my hands

I remember thinking at that time that her action was so ridiculous. I continued to think about that until recently. Now I'm 73, and it's me who can't open the damn bottle. I, like my mother before me, suffer from ATTR (transthyretin) Amyloidosis, familial amyloid polyneuropathy (FAP). And in gripping bottles, you must fight through polyneuropathy, the lack of feeling in the fingers, and its partner, muscle atrophy. Yes, I open my junk drawer, and there it is, the same hammer. Part of my inheritance. It should be attached to a plaque on the wall saying, 'Use only for neuropathic bottle opening.' But I grab the channel-lock pliers instead. A more sophisticated destruction tool. Took but a second, without the extreme rage, and not surprisingly... tablets everywhere.

Adapting to ATTR means asking for help

Strange story, but adapting to what this disease sends your way is a must. Whether you find your own solution or ask another for help, you need to do it without frustration. About a week ago, for the first time in my life, I asked my wife to open the milk carton for me. Such a simple task, effortless for her, but it took me 51 years of marriage before I could ask for that kind of help. It felt good. I highly recommend that you find someone who has your back.

When neuropathy reaches my feet

The polyneuropathy extends to my feet, too. Spending my entire career in the outdoor recreation business, I can't guess how many thousands of miles those feet have on them. Mountains, canyons, road races - those feet have served me well for 73 years, but they too are failing. What few still-working nerves in the bottom of my feet, the ones that turn purple at times, fire off like a bed of nails when going barefoot, and I inadvertently step on a piece of gravel. The doctors told me to always protect my feet, to not go barefoot. But no matter how painful those nerves are, there is joy in knowing that my feet are still alive. What's a little blood when you can't feel the wound?

A cane, a placard, and feeling lucky to still be here

So, I must humble myself. I use a cane now, and there is the blue disability placard I hang from the rearview mirror. Admitting to myself that I needed these things was very hard to do. Admitting I need help of any kind is hard for me. But it's a miracle that I am still here. I watched my brother succumb to this disease when he was 64. I'm lucky that I have the meds to slow the deposition of amyloids. They weren't around for him. I'm lucky that the medical community knows so much more about this disease. That wasn't there for him. And I am so lucky I have many others to talk to about the disease.

Looking to the future with ATTR

I wake in the morning; I have my wife for support and dogs for humor. I can sit and watch the birds fly and the seasons change. But the most important thing is I can now look to the future.