As caregivers, we should not overlook the physical, mental and emotional toll when caring for our loved ones with Amyloidosis. The best remedy for us (I am a caregiver myself) is having the ability to find support by way of the sharing of our experiences with one another and by creating this avenue to listen, ask questions and just having conversations with one another. This as a form of therapy that can be a great source of comfort.
At NZAPA we are equally passionate, not only for the patients, but also about supporting carers and I personally want us to connect and make this outlet available so we can be an encouragement for and to each other.
Please listen to Nancy Verel, a nurse at the Cleveland Clinic and a caregiver for her husband, Marty, with AL Amyloidosis. She shares her story about their family’s journey through Marty’s diagnosis and treatment. I know that each of us have a unique and different journey with the disease but there are similar threads that runs across all of our lives as caregivers which is that we all have our ups and downs that we all go through. Additionally, please listen to the input from Robert David, manager of cancer support programs at Boston Medical Center and facilitator of weekly amyloidosis support groups as he provides coping and support strategies for us. This highly informative video is only made possible by the hardworking people at the Amyloidosis Research Consortium (ARC) and if you want to know more about their work, please click on this link.
Ngā mihi nui,