Thank you so much for your understanding. It means so much to me to find others who can relate to the pain we experienced simultaneously with my husband. A few facts about his case are worth noting. His grandfather on his father's side had PD, so some believe it skips generations in males. On top of that, John had two serious concussions as a child. In the first one, he fell 30 feet from a tree, was knocked out for a week, and recovered. A second fall resulted in another concussion. In his early 20's, he had some odd vision problems, causing blinking and double vision. He, like I, grew up in a rigid, authoritarian home of "strict discipline." At 16, he saw a psychologist for depression and social problems, which may have been very early symptoms of PD or not related. He had a sister who was horribly bulimic, and there were obvious family problems they were not allowed to confront. At 32, his first diagnosable symptom was an ache in his right shoulder that our internist thought was bursitis. John and I both entered the DATATOP study; he later found out he was taking a placebo. He withdrew from treatment at the Natl. Parkinson's Foundation when the head of neurology suggested he had a psychiatric disorder on top of PD. Years later, the doctor was proven correct.
Regarding meds, John took elavil and lithium for the depression. Neither helped much. He also took a lot of benzos in various forms, all of which made him sedated and caused apnea along with depression. At one point, he took Wellbutrin. His doctors were very conservative with his meds because his family had so many lawyers in it who tossed their weight around. Sadly, he never tried an antipsychotic because the docs were afraid they would interfere with his PD meds. An antipsychotic that is safe for PD came out in 2015, a year after John died. Yes, he donated his brain to the Univ. of Miami for study. His mother wanted him to have shock treatments, but no psychiatrist would take the risk since he had had DBS surgery. It would have helped John much more to explore his mother's obsessive relationship with him and her unhealthy need to control his life, marriage, and family. Even though John was mentally incompetent, his mother pushed through a divorce in 2007 when our youngest daughter turned 18 and the child disability payments stopped, and he could drop the children from his health insurance, which cost a few hundred a month. She made a financial decision to break up our family and put John in a nursing home. I worked hard to help the kids adjust to loving him and being comfortable hanging out with him in the home; John was much younger than most of the residents. After the divorce, we did not speak for seven years. I tried to help my youngest daughter mend a fragile relationship with him six months before he died, but he did not want me around. His decision to perpetuate the animosity alienated our daughter, so she did not see him again. Again, his psychosis got in the way of relationships. After he died, one of his sisters alluded to the psychosis briefly. It's too bad they lacked the skills to deal with it during his lifetime. At one point, John tried to push daughter #1 down some stairs in his apartment. Another time, he pushed daughter #2 into a sliding glass window. He strangled me in front of all three children ... and it was not the first time he had choked me. When I told family members about these incidents, they quickly swept them under the rug or accused me of lying. Crazy situations make people crazy.
In retrospect, I wish we had discussed death with our children when they were younger. Everyone avoided it because it was so painful to anticipate, so scary, and we believed John would live to see a cure. His sudden death was a shock. Most likely, he died from a sudden heart attack, just like his father had done 35 years earlier. John had been in the hospital following several falls with broken ribs, etc. He was back in the home with a full-time nurse at his side. She took a break and left him for 10 min. When she returned, he had died in his bed. Our daughters were heart-broken. We focus on the good memories, but it's hard to forget all of the pain.
The neurologist who diagnosed John in Tallahassee in 1987 gave us some very wise advice at the time. He said, "Do not make any major life decisions or changes for one year. Just live with the diagnosis, see how you adjust and feel, then decide how to proceed." Well, we were 27 and 33. Immediately, John changed his career path; we sold our house and moved to south Florida, bought another house, and I returned to graduate school. We should have followed Dr. Vroom's advice. I do think our lives would have unfolded very differently, probably much happier, had we listened.
I hope this helps someone out there.