My Mom, died from complications from the treatment of uterine cancer in 1976. The radiation treatment that was used in those days was very unfocused and wide spectrum. The radiation from the cancer treatment damaged every organ in her abdomen and she died of uremia because her bladder was gone from the radiation. I paint this painful picture, because I can still see and hear my Dad standing over my Mom, His wife of 48 years, as he pinched her big toe and said; "you'll be OK Evelyn, all you have to do is get up and walk around the block!" He did not understand what was happening to her. Heck, none of us did. We all wanted her to be better, but that was not to be.
Friends and family say the same sort of thing to me, on a regular basis. "Don, all you need is a computer calender and your memory will get better." or; "You need more discipline in your life!" First of all, those of you who have known me for more that a few years know I was one of the most disciplined, principled, people you will ever know. You can't make Master Chief in the United States Navy, in 14 years 6 months, and not be disciplined. If you don't understand the military, you will not understand my level of personal discipline. Navy Regulations, rules, tradition, responsibility, uniform regulations, physical requirements, ruled my life. I would not even hold my own child when in uniform because it would hinder me from saluting! I am the picture of discipline. But, parts of our bodies fail. Why? Ask GOD, it's his plan. There is a verse in the Bible that tells us that all the days of our lives are written in GOD's book BEFORE we are even conceived! GOD knew, before I was born that I was going to be a Navy Master Chief and He knew I was going to have to deal with Parkinson's and Dementia. Nothing I have done, or can do will change that. Furthermore, it is getting worse!
I realize I have written about this before, but people close to me, just don't understand what I am going through. So some of my friends, just like my Dad, who believed that a good, fast walk around the block would cure what "ails" you, believe if I kept a calender, a list of things to do, or if I was just more disciplined in how I conducted my life, I would get better. Well, my friends, just like Mom, I am not going to get better and the end product of this is that I am going end up drooling on my shirt and peeing in my pants! As my Dentist, who is also a friend said; "If you drool enough, no one will notice the pee!" That's my goal! But I probably won't know anyway.
So, while I know your recommendations are offered with an honest desire to help me get better, all they do is make me feel like you think I am a liar, or a malingerer, or a gold brick. It is like you feel that if you just slapped me, like General Patton did to that fellow for having battle fatigue, that I would snap out of it and get back to normal. This is normal, and it's on a sliding scale! and the slide is down! And frankly, I am getting tired of being called a liar! I have had more medical tests, cognitive skills tests, and seen more Neurologists and Neuropsychologists than I ever knew existed. It took my Neurologist and her team 9 months to diagnose this. The Federal Retirement System, under the control of the Office of Personal Management granted me a disability retirement on the first request. That never happens, so did Social Security. You know they never go easy. So why do you continue to question my illness? Please, accept this, so we can move on to living with my condition instead of trying to cure it. There is no cure! I have accepted that, and so should everyone else.