Snapshots of the mobility needs of people with FAP

Adapting to mobility needs is one of the priorities of FAP caregivers

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by Ezekiel Lim |

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A few months ago, I learned something new about my wife’s side of the family as we celebrated Thanksgiving. My mother-in-law suffers from familial amyloid polyneuropathy (FAP), which I already knew. But my wife’s grandmother told me that three of her own siblings had also been diagnosed with neuropathy.

She added that one of her brothers started having neuropathy symptoms in his feet that made it unbearable to walk on the carpet in his own home without socks on. The pain became so bad that his daughter had to come over to help him put on new socks every day. His daughter eventually took on the role of caregiver, which began by helping him remove and put on his socks.

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A few weeks later, I traveled to Central America for a friend’s wedding. I got to know the couple that hosted my vacation rental and found out from the husband that his wife had started experiencing neuropathy symptoms 20 years ago. Her doctor immediately prescribed medications, and she eventually had to rely on a cane to walk.

The husband said that her symptoms have remained somewhat stable over the years. She spends her free time learning to play new musical instruments. Staying busy has kept her mind focused on productive things. My takeaway was that keeping the mind occupied on other activities while managing pain, and making mobility a top priority, may help new patients and their caregivers adapt to life with familial amyloid polyneuropathy.

When my mother-in-law began having symptoms, the pain in her feet became so bad that she eventually required a wheelchair. When I first met her, she had already upgraded to a power wheelchair. Her primary mode of transportation outside the home was a Ford Taurus with a wheelchair attachment on the back. My father-in-law helped to attach the wheelchair when they’d go out.

As her pain continued to worsen, she was no longer able to drive. So my in-laws invested in a wheelchair-accessible van that my father-in-law drove. My family has adapted to my mother-in-law’s needs as her condition has changed over the years.

New caregivers must be ready to do the necessary research to find the devices that help their patients live more comfortably. While these might not be good Christmas gifts, they are crucial for caregivers to know about as the needs of their loved ones with FAP increase over time.

From socks to canes to wheelchairs and modified vehicles, these items are worth the time and money to provide a little comfort to our loved ones.

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.


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