My husband had early onset PD. We noticed a tremor in his pinky finger shortly after our first son was born almost 16 years ago. My husband turns 50 tomorrow. He went to a few doctors and they said the tremor was "Essential Tremor." The tremor started to get worse and later he was diagnosed with Parkinson's. We were both pretty devastated to say the least but we knew we could get through--For better or Worse.
I wanted to be a supportive partner
I decided that rather than be depressed about it, I could educate myself and be the best and most supportive partner. He never really said very much about the diagnosis, sort of just had a keep going kind of attitude. I often would recommend looking into good diet and exercise regimens to help as symptoms progressed. I would often ask about next doctor visits, if his doctor had any good advice, etc. There was never any follow up, there was never any communication, it was just deal with it and move on from him. It always bothered me but there was nothing I could do about it and I didn't want him to feel worse. It was kind of like walking on egg shells about the disease.
My husband and I had met while he was playing saxophone in a band. I walked into a bar one night and saw him playing and told my friends that that was the guy I was going to marry someday. He was THAT guy on stage that women were all drawn too, he sort of stole the show with his amazing talent, how could someone like that end up with a disease like Parkinson's? He just kept on, he started to get REALLY good at hiding it. He never wanted ANYONE to know. He found the perfect job to be able to hide his disease, he opened up a recording studio and was a master at making great sounds for any band that walked in the door as well as a master at hiding his secret. He had a room all to himself, it was basically a man cave.
I worked during the day as an art teacher and would come home and care for the kids while he would go to the recordings studio and make records or just hide. This went on for 10 years and I ALWAYS supported him in this dream too. Once again, thinking that he feels really bad about the disease and this is something he is really great at so I supported him. The financial burden of the bills and the feast or famine idea became an issue. He eventually had to close the studio because he could not afford the bills and there was no profit. The demise of the studio also became the demise of our relationship.
Things had been moving along okay, looking for a new job etc. but then one June morning at 4 am, I was awakened by him turning on the light and accusing me of having someone in the bed with me. I was completely blindsided, had NO idea what was happening. He ran out of the house and went running down the street. I had to call 911 because I didn't know what was wrong with him. He kept saying that I had been cheating and he had video footage to prove it. The paramedics showed up and saw him staring at a tv trying to prove that I had been caught cheating with multiple partners. I was crying and in shock because he was SO convinced that that there was something on the screen. One of the paramedics said he saw a cat but that was about it.
We tried to get him to go and get an evaluation but he refused until hours later after convincing from the primary care doctor. After the evaluation, the social worker recommended that he go to a Psyche Ward in order to get the ball rolling to have some treatment. I remember feeling like I was stuck in a nightmare for days--my soulmate was gone... There were so many things that happened during this time but I was committed and hopeful. We found a good neurologist as well as a marriage counselor. My goal was to continue to support and be there for him.
Fast forward 2 years, and it all went down again although this time I was a little more prepared, totally devastated but not blind sided. This time I had to get a peace order because he was so mean and would not stop accusing me of having affairs. It all came out of nowhere again. It was another nightmare. I was trying to hide this from my kids as well as do my best at my job. The peace order was a good thing in that it enabled me to get some help with him as he HAD never let me be a part of this journey before. Before the court hearing, I had said that I wanted him to get help from a psychiatrist and that I go to ALL doctor appointments as well as support groups.
Finding the right neurologist
Things did improve for a while after this. He had started a new medication for Parkinson's psychosis and we had found the best neurologist ever who for the first time had given him a medication schedule, an exercise, and diet regimen. I have learned so much about the disease and was his biggest supporter despite the horrible things he put me and my family through. We have gone through several neurologists, counselors, different meds, etc. I was his wife/care partner. He always made it clear he did not want a care partner—-he became more difficult and challenging every day this past year.
There is so much more to the story but long story short, when I discovered that he had been lying to me about certain meds that he should have been taking for his psychosis, enough is enough—-he wants to do things his way and I can only take so much emotional abuse. I have 2 teenage sons, one has autism and the other one has ADHD. I am a full-time teacher, have been the breadwinner for the 21 years that we have been together—-I made the brave move to divorce him. The toxic environment is not healthy for anyone. I am still an advocate for learning and helping in any way that I can so that I can help my boys through it.
There definitely needs to be more education and information about the non-motor symptoms associated with PD—-so maybe people can be a bit more proactive with the treatment before it gets too bad, like in my situation. My heart still aches a lot because the person I married is not the person I am divorcing. I have been the most devoted wife and the disease can not let him see that. I think of him and how he will probably have to do this alone, but maybe that is what he wanted to. He had such a difficult time with accepting and letting me in, now he has the control that he wants--I hope that is his Peace. I am finding my Peace by staying strong for my two sons. Thanks for listening.
Do you find music to be an important factor in your life with PD?