For patients with familial amyloid polyneuropathy, even time spent with family can be physically taxing. As peripheral neuropathy symptoms increase, caregivers need to ensure that their loved ones are prepared for every interaction.
While adults may understand the limitations that peripheral symptoms place upon interactions with patients, children may be unaware of the physical boundaries that need to be set. For neuropathy patients spending time with children, there are important things for caregivers to consider.
My wife comes from a close-knit family that values the importance of proximity, whether by living close to one another or by staying in regular contact. Distant family members are encouraged to visit regularly. My mother-in-law loves being around the children and always tries to make the most of every interaction.
Patients and caregivers need to manage the time spent with children so that physical pain is not inadvertently increased. Following are tips for patients interacting with children of all ages.
Infants and toddlers
Infants and toddlers bring a great deal of joy to their relatives. But it might be difficult for neuropathy patients to carry a child due to their physical pain and the need to protect the child from potential accidents. Caregivers should be present when their patients are with infants and toddlers to ensure that neuropathic pain is not inhibiting the interaction.
For patients who want to hold their grandchildren, a lightweight baby sling carrier allows them to hold the child without the risk of exacerbating pain in their extremities. The patient should be seated and comfortable to ensure that the child is stable and the patient is not in pain.
Patients interacting with older children may want to spend time playing games with them. Unfortunately, some games may prove to be physically taxing for patients with numbness and tingling sensations in their hands and feet. These times may be spent playing less physically involved games such as board games or card games.
In our family, my mother-in-law plays cards with the children. My wife or I help when taking her turn causes pain in her hands.
Neuropathy does not have to hinder a patient’s interactions with children. Caregivers are an important part of patients’ everyday interactions and help them through physical issues that impact their quality of life. A good support system ensures that patients are involved in the nurture and growth of the children in their families.
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 Services, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.