I have just discovered this forum a few days ago, and discovered a wealth of information. Let me introduce myself and our situation. I am hoping for some insight or suggestions. I do not have PD. My husband does. I saw another Member "Spousewhocares" that came forward, so I am hoping that I am not overstepping the boundries here but rather seeing if your own experiences can help my husband.
He was diagonsed with PD almost two years ago. He Is 53 now. He was placed on Requip (the lowest dose possible) and Azilect. Over the course of the two years, he has increased the Requip to max dose of 24 mg per day. He was doing very well, and we saw really good results. The only major side effect was his obssesion with playing his guitar 8 plus hours a day. I figured if that is the obssesion to have, than all is good.
1st week of July, I go out of town for 9 days. He is home alone. The Last 3 days out of town, I am unable to reach him. I come home, and find that he has not eaten in 4 days, and stopped taking his meds for a week. I took him to the doctor immediatly. He suggested starting him back on 12 mg a day for several days, and then back to his regular dose. So that is what we did. That is when the paranoia began. It started slowly, but then got so bad with in a week that there was no reasoning with him. He was so sure that all people were robots, and we had all been computer chipped, and were being controlled by others. He was hiding kitchen knives under the bed as he thought someone was after him. He began talking about how he had died three times and come back to life. He would ask me if we were alive or dead. He removed pictures from the walls, and destroyed the pictures. And so much more. This is just a few examples.
I called the doctor from work, and he suggested a psychiatrist, or take him to the ER to be evaluated. I thought to myself, we have to find a new doctor right away. When I got home that day, my husband was gone. They only thing he took with him was his wallet. I filed a missing persons report, began searching for him, and he was found five days later by the police at the bus station. He said he had called me over and over again to come and get him. He truly never had called me. He then told me he was reaching out to me telepathically to come and bring him home.
I got him home. The doctor suggested to drop his requip dose to 6 to 12 mg a day with no Azilect to see how he does. Some of the paranoia has gone, But other things are now occuring that never did before. He will hear a song, see something on TV, hear a conversation, and then he will come up with these wild stories of things he belives have happened to him in the past. Bad things... But none of the things he thinks have happened every truly did. Example, thinks he drove a car and hit a person, and left them to die. He now has become obsessive/compulsive about sex. The actions associated with this have been very disturbing, and rather hard to deal with as this actions are not him. There seems to be no voice of reason in his head anymore. He even went as far as asking a neighbor to come join he and myself in a sexual manner, as he said he knew that is what I wanted, and that we had dicussed it. There was never any such conversation, and definetly something I would not participate in. We will be watching TV, and he will just stand up with no thought what so ever, and undress himself. I tell him this is not appropriate behavior, and he will get dressed, only to do the same thing 15 minutes later.
I could go on and on about all of things that have occured in the last month. It has been a month of hell for both of us. But more so for him. He knows something is wrong, but he can't figure out what it is. He doubts me a lot. And what I mean by that is he is always asking am I going to leave, or do you love me, or are you real or a robot taking my wifes' place......No matter how many times I try to reassure him that I love him, that I am not going anywhere, that we will get through this together, it doesn't seem to get through to him.
I have since taken him to a new doctor. He is a movement disorder specialist, and we both liked him right away. So last week, he was put on Amantadine 100mg once a day, and Requip 12 mg once a day. We are to do this for two weeks. If he does well, then increase the Amantadine to twice a day. If he is not doing better, we are to drop the Requip dose to 8 mg once a day, and the Amantadine to twice a day.
But so far, I have not seen much change, except the Amantadine has now added new side effects such as increased anxiety, restlessness, anger, and lose of appetite.
He is home alone everyday as I have to work full time to support us. I worry all day long. I call and check on him at least 3 times a day. I feel he shouldn't be left alone at this time, but don't have the resources to get someone to stay with him during the day. I have discovered that he has been taking additional doses of Requip when I have been at work. He thought he sould take it because his freezing episodes, and walking have been dramatically worsened by the lowering of the doseage of Requip, He had also been trying my perscriptions because he thought they would help him as well. He took allergy medicine because his throat hurt. He said he tried my nose spray because his nose was stuffy, but in fact he had used my eye drops for his nose. I have since removed all medications from the house. I take them with me each morning. I place his dose on the counter every morning so that he can't take anything other than what he is supposed to. I keep telling him we are trying to regulate his meds, so that we can find what will help him, and what won't.
I know I have been going on and on.... These things are so personal and we are noramally very private people. I just feel so helpless. I am hoping by putting this out there, that some of you may be able to give us some suggestions as to what may work medicine wise or a combo of medicine for any type of simular situations.
He is the love of my life, my soul mate and best friend. I have to keep reminding myself everyday, that this is not him. That it is out of his control when he says hurtful things, or suggests things that would never have occured prior to all of this. I need to find him some peace. He is so lost and suffering right now. We both are.
Edited by loveofmylife, 15 August 2014 - 08:09 AM.