Jaime Christmas is a patient advocate and columnist based in Auckland, New Zealand, with her cheeky doggie, Akira. She was a caregiver to a spouse who was afflicted with hATTR amyloidosis. Now she fights for equitable treatment and support for diagnosed patients and their caregivers. Although she now lives without the daily challenges of being a caregiver since her husband’s passing in 2022, she hopes to be still an encourager and listening ear to those presently walking the journey she knows only too well.
My late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013 and passed away on May 22, 2022. Those nine years were spent transitioning from having harmony in our marriage to navigating a relationship wrought with…
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My husband, Aubrey, has begun watching cooking videos on YouTube to overcome an aversion to food and eating. We are both from Malaysia, where food and eating are central to everything. Food is such a big part of…
As we enter the second half of October, I’m not quite sure how the end of the year has arrived so quickly. Time flies while caregiving. I care for my husband, Aubrey, who has hereditary ATTR amyloidosis. Though he…
To all my fellow caregivers, I want you to know that I understand what you are going through, and I am cheering you on. After eight years on this journey with my husband, Aubrey, it’s still challenging to come…
I lost my mother in May. Even as I type those words, I have not fully come to terms with it, as I have yet to receive closure. She passed away in Malaysia while I was thousands of miles…
If you are a longtime caregiver for a loved one with hereditary ATTR amyloidosis, you are probably knowledgeable about the condition. My name is Jaime, and I have been a caregiver to my husband, Aubrey, who has been…
I look for humor in every situation. Humor can be lifesaving in times of despair. U.S. Congregational minister Henry Ward Beecher said, “A person without a sense of humor is like a wagon without springs. It’s jolted by…
The 3rd European ATTR Amyloidosis Meeting for Patients and Doctors was held virtually on Sept. 6-8. Because the New Zealand Amyloidosis Patients Association, which I lead, is associated with the Amyloidosis Alliance, we were invited to participate…
My husband and I were married on March 15, 1995. Looking back at these 26 years, I can see the gray and black stain of trials. However, our marriage has been filled mainly with a tapestry of beautiful colors.
The melodic chirping of birds outside the window is louder this morning. This is because Auckland, the city in New Zealand where I live with my husband and our four children, returned to Alert Level 4, meaning lockdown,…
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…
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…
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…
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