I have had two Datscan tests which both confirm Parkinsonism. I have frequent falls, have barium swallow test confirming need for thickening food and drink due to swallowing problems and when I develop a sinus drip I have syncope (brief fainting spells due to choking and coughing 15 to 20 times a day. I do have lung scarring due to aspiration, but at this point no pneumonia. However, diagnosed restrictive lung diseases is rapidly progressing due to neurological malfunction. My neuro eye exams show jerking and slow movement and vertical movement restrictions.
Of course all of this point to PSP, according to docs, but not the classic Richardson Steele description of 1989 or whatever date.
My biggest concern is my cognitive problems, and my biggest problem is they aren't obvious to outside observers. I can carry on a conversation although I have to take time to find a word and my speech is mumbling. Before this I was a well known public speaker writer.
Now my personality has changed and I get in frequent fights with my wife because she thinks I jealous while I think she has separated her life from my life. I am on disability and stay at home alone
I am in a constant fog ( can't formulate thoughts),find it very difficult to begin a task.
I do everything I can to stay active and even have spoke at 12 different Parkinson support groups in the last year. I can only do that by spending days in preparation and voice exercises But do what I can to live beyond my limitations (what my talks are about) I have been a type 1 diabetic since 1963 and from that was blind for three years and was on dialysis and got a kidney transplant. Therefore, I know what it is to face adversity and move on, but this isn't physical alone, it is cognitive.
But haven't got to the point. the world I live in is fog and all the cognitive problems associated with PSP, but I live there alone. Things are rapidly worsening physically and cognitively but choking and lung function and falling at home alone and the emotional changes aren't apparent... I live there alone.
I'm not looking for answer or "do this" cause I done all I've been told to do.
I am merely attempting to express out loud what I haven't bee able to say before but held inside.