For 50 years, I’ve been immersed in healthcare, first as a provider and later in administration. Five years ago, my life took an unexpected turn with a challenging journey through misdiagnoses. Initially told I had “no problems,” I then received diagnoses of ALS, spinal stenosis, Myasthenia Gravis, and CIDP before finally arriving at my current diagnosis of Miller Fisher Variant of CIDP.
This journey has presented significant hurdles: chronic double vision, a paralyzed phrenic nerve requiring two ventilators and a tracheostomy, severe swallowing and speaking difficulties necessitating a feeding tube, and leg nerve damage that requires the use of a power wheelchair.
Leveraging my extensive healthcare background, I’ve become an active participant in managing my complex conditions and the array of support equipment and supplies. I’ve gained invaluable knowledge and insights navigating this path, and I’m eager to share what I’ve learned to help other patients and caregivers embarking on similar journeys; and hopefully help remove some of the fear of taking the first steps.
Disclaimer: While I have a background in healthcare, I haven’t been a practicing provider in many years. The knowledge and experiences I share here are strictly my own and should never replace the professional advice of qualified and currently practicing healthcare specialists.