For neuropathy patients, especially those who have familial amyloid polyneuropathy (FAP), the caregiver may become their arms, legs, eyes, and ears. While that may seem like a daunting task, there’s a benefit: Caregivers experience an emotional side to their daily duties that seems to make them one with patients.
Over a year ago, I met someone. Darren James came into my life at a point when I was questioning whether I could build a life with another man after losing a spouse. My late husband, Aubrey, and I had been married for almost 27 years before he passed…
Oct. 26 isn’t just another day; it’s World Amyloidosis Day. As a leader of the New Zealand Amyloidosis Patients Association, I’m excited to use this day to raise awareness in our country and unite with our global community. Your support, especially from those in other countries who follow our group…
Since January, the amyloidosis association I lead here in New Zealand has seen our patient numbers grow like never before, primarily because of newer diagnostic tools and more awareness among doctors about the disease. We’re receiving more emails from diagnosed individuals seeking advice on what to do next,…
A diagnosis of familial amyloid polyneuropathy (FAP), or the onset of peripheral neuropathy symptoms, may cause patients to worry about missing out on the activities they enjoy. Spending time with family, hosting, cooking, and participating in backyard sports may seem daunting due to neuropathy…
The companionship of dogs and other pets may benefit patients by helping them cope as they manage the symptoms of familial amyloid polyneuropathy (FAP). But depending on when the pet becomes part of the family, its presence may also be a hindrance, unknowingly aggravating the patient’s pain. That’s especially…
It’s winter here in New Zealand. I woke up to a thin sheet of ice covering the deck, staying frozen just long enough to glint in the morning sun. That happens when moisture trapped in the air cools drastically and the temperature drops below freezing overnight. Now that I live…
As I mentioned in my last column, my mother-in-law’s peripheral neuropathy symptoms seemed to take a turn for the worse in April. At the same time, my wife and I were experiencing additional life changes with the birth of our second daughter. Our priorities shifted, and we were…
The past month was challenging for my family. My wife and I were expecting the birth of our new child at any moment, according to my wife’s symptoms and her doctors’ words. But at the same time, my mother-in-law was experiencing pain related to peripheral neuropathy, which has resulted…
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…
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