What resilience looks like when living with hATTR amyloidosis
Resilience isn't always demonstrated with dramatic acts of courage
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When my late husband, Aubrey, was living with hereditary ATTR (hATTR) amyloidosis, no two days were ever alike.
One day, he might manage reasonably well. The next, pain, exhaustion, bowel problems, dizziness, or weakness could change everything. Plans were made cautiously because we never knew what the disease would demand of him, or us, when morning came.
As his caregiver for nine years, I learned that hATTR amyloidosis doesn’t simply affect individual organs. It gradually changes how a person eats, moves, sleeps, and participates in family life. The burning pain in Aubrey’s limbs continued even when medication helped him sleep. Bowel problems woke us during the night, while fatigue and physical weakness made ordinary activities increasingly difficult.
When someone is experiencing nausea, diarrhea, constipation, early fullness, or difficulty swallowing, food can become something to fear rather than enjoy. Similarly, when walking causes fatigue, breathlessness, pain, or dizziness, avoiding movement can feel like the safest option.
From my personal experience, both patients and caregivers must be intentional, not because determination alone can overcome amyloidosis, but because nutrition and muscle strength can be quietly lost. At the same time, everyone is focused on managing the next crisis.
Research has shown that gastrointestinal dysfunction and poor nutritional status are associated with reduced functional capacity and poorer outcomes in hATTR amyloidosis. Lack of activity can also accelerate muscle loss, making it progressively harder to stand, walk, climb stairs, or remain independent.
Living with amyloidosis means regularly adapting
Looking back, I understand that resilience isn’t always demonstrated with dramatic acts of courage. Sometimes it’s found in preparing a small meal that can be tolerated when a full plate feels intense. It may mean including protein in whatever form the person can manage, monitoring unexplained weight loss, or asking a dietitian for help rather than accepting declining nutrition as inevitable.
For Aubrey, being intentional meant recalling how certain types of food taste before eating, to whet his appetite. This was due to his taste aversion, which developed during his illness, meaning that his favorite dishes no longer tasted the same.
Resilience may also mean moving differently. Exercise doesn’t have to involve a gym or a strenuous activity. Depending on the person’s condition, it might be a short walk, gentle seated movements, balance exercises, or supervised cardiac rehabilitation. The purpose isn’t to push through dangerous symptoms. It’s to preserve as much muscle, mobility, and independence as safely possible.
Amyloidosis affects every person differently. Those with cardiac, kidney, neurological, or gastrointestinal involvement will need advice adapted to their own circumstances. Exercise should be discussed with the treating clinician, particularly when there is heart involvement, dizziness, severe neuropathy, or a risk of falling. Dietary recommendations may also need to account for sodium, fluid, or kidney-related restrictions.
Caregivers have an important role here, but we must treat it with compassion. Encouragement should never become pressure. On some days, the patient may manage a walk and a nourishing meal. On other days, getting out of bed or eating a few mouthfuls may be an achievement.
Aubrey’s journey showed me that intentional living with amyloidosis means regularly adapting. When one approach no longer works, we try another. When the disease takes something away, we look for what can still be protected.
No two days will be the same. Resilience means meeting each day as it comes, nourishing the body, preserving movement, asking for help, and refusing to surrender the things that may still be maintained.
Note: Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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