Could Someone Suggest A Provider In The Northern NJ Area Who Treats Narcolepsy?
I suffered a TBI in 2013 and seemed to have memory issues, and mild cognitive impairment since. I had been a Microbiologist for 25+ years in a hospital. Most will say I don’t appear to be disabled and quite intelligent. But I can’t even do math now and I have multiple “to do lists” I write, re-write daily, I forget medications and sometimes to eat. I seem to struggle with sense of time. I can be on my phone texting for hours and wonder why my hands hurt, I think I’ve been on the phone a much… read more
Setting a timer sounds like a good idea to keep me on track. Thank you for the suggestion.
I’m going through the same situation with providers and a Comoros diagnosis with being beyond the scope of the spectrum as the “worst case seen in narcolepsy with all cataplexy.” In Indianapolis area and really struggling with finding care and treatment that hears/sees me and the “extremely severe” worst case beyond the spectrum treatment matching the diagnosis!!!! Robbed is an understatement and it’s baffling how many of us are diminished and dismissed by the medical community who refuse to acknowledge the severity of reality and that this IS A DISABILITY, chronic neurological and LIFE LONG treatment REQUIRED
Totally see how/why people head to the streets or other places and countries for medical care!!!
I keep post it notes taped to my water bottle. And have to keep post its and notes everywhere. Thankfully all my coworkers and friends know if I need to be reminded it has to written down. I rewrite my lists often too. And sense of times been a real struggle for me at work since diagnosis. (I had a bad case of strep that made my symptoms significantly worse) I set a timer when I start a task to help keep me on track. Sorry you’re going through that. We’re here for you.
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