It is interesting how human emotions can fluctuate like the ebb and flow of the tide. I am usually upbeat and composed, but at the drop of a hat, I also can become upset and intolerant. I liken emotions to the weather. At times, we can predict the conditions and…
Those of us who are caregivers have many of the same underlying goals. But while we all care for our ill loved ones, our approach to caring can vary. Some of these differences may be due to cultural practices. I grew up in Malaysia as the eldest of…
I returned to the gym this week to work out. The last time I hit exercise classes and equipment was in 2016, shortly before my husband’s liver transplant, and three years after he was diagnosed with hereditary ATTR amyloidosis. Looking back, I have always been a gym junkie. I…
As a caregiver, have you ever felt like you’ve been thrown into the deep end and are treading water just to survive? Perhaps this overwhelming experience doesn’t happen regularly enough to leave an impression, but when it does, it can feel like the rug has been pulled out from underneath…
Today, I’d like to talk about caregiver burnout, which extends beyond the physical burnout of completing various caregiving tasks. It also entails more than feeling helpless when a caregiver is unable to meet the expectations of the rest of the family. Caregiver burnout stems from the gradual mental and…
In my role as a leader of the New Zealand Amyloidosis Patients Association, I’ve had the privilege of forging relationships with many wonderful human beings. The people I’ve met while running this charity, established in 2019, have enriched my life and pushed me further than I could’ve ever imagined.
No matter what you’re going through or where you are, know you are not alone. Suffering from a rare illness like hereditary ATTR amyloidosis (hATTR) is filled with daily challenges, and no two days are alike. I know this not because I am a sufferer but because my spouse was…
If you are a fresh set of eyes and have newly stumbled onto my column, welcome to the world of an amyloidosis caregiver. My husband was diagnosed in 2013 with hereditary ATTR amyloidosis (hATTR) and had a liver transplant in 2016. As recent as five years ago, orthotopic…
I was in the car with my daughters earlier today, and as we turned onto a busy street, we saw cars already lining up to beat rush hour. It was one of the few occasions when I get to enjoy my kids’ company and feel carefree. For those reading my…
Lately I’ve had to remind my husband that he is not his disease. Aubrey was diagnosed in 2013 with hereditary ATTR amyloidosis, and after eight years, his impairment has become evident to those closest to him. Externally, though, Aubrey looks great. A stranger wouldn’t be able to tell how…