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Clarity Now

Dual Diagnosis

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My husband, an athletic, stable, hardworking father and attorney, was diagnosed in 1987 at age 33.  PD "Syndrome" affected all five of us in the family over the horrific 27 years John suffered until he died in 2014 in a nursing home, leaving behind three broken-hearted daughters.  John muscled through four DBS surgeries, which seemed to help some with the tremors.  The most painful part of his disease were the symptoms he had that everyone in the family was carefully trained to deny because they were "socially unacceptable" in his family of Ivy-League values.  John became horribly depressed, anxious, and psychotic about eight years after diagnosis.  He became addicted to benzos to treat the anxiety; however, a benzo addiction mimics PD symptoms.  By denying his addiction, his health deteriorated more than PD alone would command.  The depression caused him to attempt suicide several times; again, the issues driving his depression were never confronted.  He was even violent, attacking our oldest daughter and me one early morning, which led to his arrest and retirement from law.  We separated and eventually divorced after 27 years.  John was paranoid and accused me of things I had not done.  Our oldest daughter didn't speak to him to five years after he beat her up at age 11.  When she was older and safer, she resumed a loving relationship with him.  Two of our three daughters have suffered mental illnesses and drug addictions.  I, too, was very ill with depression caused by living with a crazy situation.  PD stole John's body slowly over the years.  He adapted.  The worst part was having the disease rob him of his mind and emotions.  If others notice signs of depression or misplaced anger in a PD patient, consult a good psychiatrist who has experience treating PD. Talk about it.  Don't pretend the disease is responsible for every malady; some family issues need resolution.  And be sure to protect the children.  Our daughters were used by grandparents to be the caretakers and companions for John, which was unfair and unhealthy for them.  No other family members would help, except from a distance.  The damage done to our daughters cannot be fixed.  Parkinson's is a bad disease that affects the entire family.  Everyone suffers, and everyone needs support and treatment.

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Thank you for sharing your story - tragic as it is.  If we are to believe the statistics, 50% of us will experience dementia during the course of our disease.  Our caregivers and loved ones will suffer along with us.  I hope that you and your daughters can find some way to heal and gain strength from your husband's courageous battle.  Best wishes, Gardener

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Clarity Now

Im sorry you had to go through this.There are quite of few stories like yours from patients who had been on agonists.Sinemet will make you alittle moody maybe you could talk a little about his drug regium.Ive experienced problems myself which went away after going off the drugs I was using.As a rule PD itself does not cause chronic nervous conditions

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Clarity Now,

Thank you for telling your story.  From my experience with  my DH with Parkinson’s, no one understands how it is to deal with the depression and anxiety that can go along with the disease, but worse than that is a lack of understanding of how difficult it is to deal with Parkinson’s psychosis.  I know about the paranoia and accusations of infidelity and other indiscretions.  I know about the violence as well.  Fortunately DH was diagnosed after our children had grown and left home, so they did not have to deal with what I did.  I can tell you that his Movement Disorder Specialist worked diligently with me to help him.  Antidepressants helped with the depression to some degree, but the anxiety was more difficult.  We tried every medication available for the psychosis and nothing worked. My DH ‘s paranoia cannot be blamed on agonists because he only took an agonist for a short time and the psychosis came much later.  Not everyone who has Parkinson's will deal with psychosis and therefore will not relate to how awful it is.  It is very disruptive to a marriage relationship.  I understand and am empathetic with what you and your children have gone through.  This is a terrible disease that can have terrible consequences for some. He also developed Parkinson’s dementia, but that has been much easier to deal with for me than the psychosis.  Please accept my wish for healing and peace for you and your family.

 

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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.

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