Managing an increase in my mother-in-law’s FAP symptoms

The daily life of a familial amyloid polyneuropathy (FAP) caregiver isn’t always one of set routines. With the nature of the ailment and its painful peripheral neuropathy symptoms, there will be days when new issues arise or symptoms become more severe. Some of these problems may be unforeseen, while others can be prevented with careful attention to diet, activities, and medications. Still, even extreme care and consideration won’t prevent every health concern.

Such is life, and the life of a caregiver requires significant patience and perseverance.

My mother-in-law lives with FAP, and her symptoms are so severe that she requires a motorized wheelchair to get around. Several medications and treatments help her manage the pain.

Recently, her FAP symptoms seemed to take a turn for the worse. She was in so much pain that she was having trouble getting in and out of her wheelchair. She also wasn’t able to cook or eat on her own because of the sensations in her limbs, specifically her hands and forearms. She was unable to hold her phone, so her sister had to text for her.

My wife spent the week at her house with our two daughters. My mother-in-law’s health issues had gotten so bad that most of her caregiver army was required. She also had a wound on her leg from trying to get out of her wheelchair as she exited the accessible van. The wound, combined with the additional pain and limited mobility in her arms, presented a daunting challenge for everyone tasked with caring for her that week.

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This emergency required a great deal of care and prayer from everyone tasked with helping my mother-in-law get around. With feeding her, helping her move around, grocery shopping, and even holding a phone or texting for her, everyone’s hands were full that week.

My mother-in-law also had to watch her blood pressure. Serendipitously enough, the nurse who visits my mother-in-law noted that the presence of my two daughters, ages 3 and 10 months, helped reduce her blood pressure. It’s funny how life works — sometimes the things we need are right there in front of us, and we don’t realize it.

Aside from having my daughters there, the presence of other family members helped maintain a sense of normalcy in the household. That was needed as it was determined that additional treatments were required to help curb the pain of her FAP symptoms. In this case, a three-day infusion of intravenous immunoglobulin (IVIG) therapy was administered.

Sometimes in life, there’s only so much you can do, and additional help is needed. For everyone taking care of my mother-in-law that week, patience, rest, and trust in the process helped us through. So far, it seems the IVIG treatment has been successful, but further complications may arise. Still, the experience helped prepare us for the unpredictability of life.

Note: FAP 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 FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.