Celebrating Care Partner Appreciation Month
Every November, we celebrate an invaluable group of individuals within the rare neuroimmune disorders community: care partners. Being a caregiver or care partner to someone with a rare neuroimmune disorder diagnosis can be challenging, rewarding, and sometimes completely overwhelming. There can be lots of adjustments and a big learning curve after a new diagnosis. Sandy Siegel shared in a past podcast episode, “The first two years of Pauline having Transverse Myelitis, I had no life. I was totally sucked into making sure Pauline’s needs were taken care of from a medical perspective and as her partner, we had two young teenage children. The whole thing was a totally overwhelming experience and I would say that in those first couple of years, I totally lost me.” In July of 2023, we hosted a Community Roundtable as a part of AFM Together. Rachel Scott, mother and caregiver to a child diagnosed with Acute Flaccid Myelitis shared, “Every aspect of our life was touched in some way. There wasn’t a corner of our life that wasn’t disrupted by it. It was a huge adjustment at first and everything is – as it’s become less new, as it’s become just what it is, it doesn’t feel as strange.” In last year’s blog, Megan Willis-Beikman, SRNA Support Group leader shared this about her and her husband’s experience being caregivers to Mia, Megan’s stepdaughter who is diagnosed with MOG Antibody Disease: “Being Mia’s caregivers has been the hardest and most fulfilling job we have ever had. It has taught us how to prepare for the unexpected, how to listen to our bodies and most importantly, how to celebrate the little wins. Life caring and advocating for a child with a rare neuroimmune disease is scary and full of surprises. We have found it is so important to find the silver linings, celebrate the small things (like really celebrate! Make a cake and have a dance party. Top it off with an at home spa day), and always trust your instincts.” Whether you are a caregiver/care partner for someone with a rare neuroimmune disorder or know someone who is, join us this month for National Care Partner Appreciation Month as we recognize the power of a care partner’s love and support. You are seen, heard, and appreciated. We celebrate you today and every day. Happy National Care Partner Appreciation Month! If you would like to explore more, participate in an event, or find support, some resources are included below:
