As a neurologist, M.D., dementia specialist I've devoted my entire life and career to advocating for Alzheimer's patients, their families, and caregivers. Managing treatment plans for thousands and spearheading numerous social initiatives has been my passion and commitment. Now, as the mother of a 15-year-old grappling with post-COVID complications and ME-CFS, I find myself facing a new challenge. Despite my expertise, navigating my daughter's treatment journey has left me feeling isolated and disheartened. This personal struggle has underscored the urgent need for more research, advocacy, and professional support in this often-overlooked field. Feeling profoundly alone in managing my daughter's treatment, I can't help but wonder about the struggles of other patients and their families in reaching out to healthcare professionals. It's clear that we need to unite and fight for our rights on this incredibly painful journey. Driven by a desire to raise awareness and provide accurate information, I've decided to create an account on Substack. My plan is to start with interviews from a neurologist’s perspective with scientists and physicians working in this field. Thank you for visiting my account.
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Thank you for posting this. Yes, it’s profoundly lonely trying to navigate chronic illness in our children, especially when the illnesses are poorly understood by the medical community. My daughter was recently diagnosed with POTS and central sensitization after being ill for two years. I’ve poured over research since she became ill and just happened to say to her tonight “I wish there was someone I could share research with and discuss.” No co-parent unfortunately. So I appreciate seeing your advocacy and activism on X, and came here to say so. Thank you 🙏
Thank you. I'm also the mother of a 15-year old daughter suffering from long Covid. Within 2 months they went from high honor roll and thinking about colleges to being bed-bound, unable to read a page. They've made a little progress, but it's agonizingly slow, and the bad days always make it feel like we're back to square one. I'm spending all of my time buried in PubMed, wishing I had a PhD in biology instead of medieval studies. . . I really appreciate your perspective.