I’m happy. That’s the best way to describe my state at this stage of my life. When my husband, Aubrey, passed away on May 22, 2022, my whole world was stirred and uprooted. He’d been diagnosed with hereditary ATTR amyloidosis in 2013, and his disease journey took…
March signals a change in seasons, often accompanied by a change in temperatures. Caregivers of patients with familial amyloid polyneuropathy (FAP) must be mindful of the transition from cold temperatures to warmer ones. My mother-in-law’s peripheral neuropathy symptoms make her susceptible to pain during extreme hot or…
Author’s note: I received no compensation for writing about the following products. I just really like shoes. My mother-in-law suffers from peripheral neuropathy pain due to familial amyloid polyneuropathy, or FAP. This pain requires her to move around in a motorized wheelchair because too much walking can be…
I’ve moved! It’s exciting, but the move was daunting because of the sheer amount of work that went into clearing out items from a place where my children grew up from 2007 onward. This place was our family home, housing much laughter, tears, and peace. History seeps through the walls,…
My mother-in-law, who has familial amyloid polyneuropathy (FAP), often experiences tingling and burning sensations as well as pain in her hands and feet. Because of that, she must keep them covered at all times. This is the reality of peripheral neuropathy. She also experiences other symptoms that…
Starting in late November and often lasting through March, the cold weather in much of the U.S. can be a burden for many patients with familial amyloid polyneuropathy (FAP). Those living on the East Coast or in the Midwest often face especially brutal winters. My mother-in-law’s FAP symptoms require…
A few months ago, I learned something new about my wife’s side of the family as we celebrated Thanksgiving. My mother-in-law suffers from familial amyloid polyneuropathy (FAP), which I already knew. But my wife’s grandmother told me that three of her own siblings had also been diagnosed with…
It’s summer here in Auckland, New Zealand, and as I look out the window at my weed-filled lawn, not only am I reminded that the grass needs mowing again, but also how time flies without qualms or quandary. It’s been 19 months since I lost my husband, Aubrey, to…
Holiday travel reminds my family just how important a wheelchair-accessible van is for transporting my mother-in-law, who has familial amyloid polyneuropathy. It can be difficult for neuropathy patients and their caregivers to be home all the time, and traveling may be necessary to keep the holiday spirit alive.
I recently had the pleasure of attending an Amyloidosis Alliance conference in Madrid, which brought together advocates from around the world who serve the transthyretin amyloidosis community. This includes the familial amyloid polyneuropathy (FAP) and amyloid light chain or primary amyloidosis communities. Attendees discussed the…