AN INVISABLE MANS JOURNEY WITH MYASTHENIA GRAVIS

01/06/2022 Having been a Law Enforcement Officer of 35 years and a New York State Licensed Private Investigator for 23 years my MG diagnosis formally received in November of 2017 was devistating to both my personal and professional life. It took me 4 years dredging through medical providers to finally find a competent Physician who even knew what Myasthenia Gravis was. As I have read other postings and writings on this website I sympathise with so many people who are caught in mire of physicians who just don't know anything about or don't know how to identify this relatively rare disease Myasthenia Gravis(General and Occular). In this weekly journal I will attempt to give as accurate description of the ups and downs, symptoms and complications, that I encounter/experience through living day by day with this frusrating dabilitating disease.

Over the past 4 years I have realized that the following indicators rule my life and they are "given"s as to how my quality of life may be conducted and experienced in the future:

(1). I will never know when I wake up each morning what degree of physical activity I will be able to accomplish throughout that day.

(2). Until I open my eyes any given day I will not be able to determine if I may drive a car or operate anytype of machine or equipment safely.

(3). Until I open my eyes I will not know if I will be able get out of bed on my own or need assistance. or what my leg, arm, and neck strength will be at that moment and or if it will improve or diminish throught the day.

(4). Until I rise I will not know what my speech capacity will be or if I will be able to eat soft foods or drink with out portions of my meals coming out of my nose or if I will be able to keep food in my mouth., or experience difficulty swallowing the food and liquid I attempt to consume.

(5) Until I wake I will not know if I will be able to shower and conduct such personal grooming that I may need.

(6) If a friend or family member calls and invites me to an outing or some other activity where I would be leaving my home, I will not be able to advise them whether or not I am able to do so until the time arises when I am to participate.

(7). I will never be able to plan to do something with my Grandchildren ahead of time for the reasons I stated.

(8). When I am able to go out of the house, I will be scrutinzed by my family and the general public, with their own prejiduce in observing me and thinking that I do not look all that disabled and that I just must be lazy.

(9). As a former Law Enforcement Officer I am very aware of how totally vulnerable to Home invasion, assault, robbery, harassment or intimidation I am, do to my obvious diminished physical condition.

(10). I will never again be able to be realiable or valuable to my wife of 45 years or any of my children and grandchildren.

(11). I will never again be able to paticipate in (MY HOBBIES) Clay Target Shooting, Competitive Pistol Shooting or any other in or outside shooting sport that requires at a minimum: A steady hand, loading and unloading firearms safely, Standing while discharging a shotgun at clay pidgeons, Skeet or Trap or performing such other necessary acts on a shooting course that will without question keep everyone safe.