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SueMillar

Loneliness

44 posts in this topic

I would love to hear about others and how they are feeling about being lonely. I have a great deal of loneliness lately. I feel that my DH is no longer "himself" for lack of a better word. I know that I am grieving him and our marriage of 18 yrs. I feel I dont have a lot of places to turn to because not many people understand about PD and all the meds and what they can do to a person. One day he says/wants something and the next he will want something completely different than the day before. I never know what is right or wrong anymore. If I mention what he said the day before he either gets upset at me or does not remember. I can not mention to him about the PD, his meds etc he thinks that I treat him like a child (his words). Then if I dont talk about the PD he gets upset at me for not being part of it. I am so confussed on how to deal with all of this. We just had a Neurology appt and the Dr is getting him to take more requip and the sinemet will stay the same. The meds dont help with any of his tremors at all. He is stiff when he gets up off of a chair, his arm, leg, hands are always shaking. The tremors are not a big deal to him or I and are not bothersome for him. For me it is the cognative issues that I can not deal with. THere is no win win in any situation that I face. So now I have completely withdrawn myself and have fallen into a deep depression which I am taking meds for right now. I would love any advice from anyone about how they are dealing with any of these feelings.

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I would love to hear about others and how they are feeling about being lonely. I have a great deal of loneliness lately. I feel that my DH is no longer "himself" for lack of a better word. I know that I am grieving him and our marriage of 18 yrs. I feel I dont have a lot of places to turn to because not many people understand about PD and all the meds and what they can do to a person. One day he says/wants something and the next he will want something completely different than the day before. I never know what is right or wrong anymore. If I mention what he said the day before he either gets upset at me or does not remember. I can not mention to him about the PD, his meds etc he thinks that I treat him like a child (his words). Then if I dont talk about the PD he gets upset at me for not being part of it. I am so confussed on how to deal with all of this. We just had a Neurology appt and the Dr is getting him to take more requip and the sinemet will stay the same. The meds dont help with any of his tremors at all. He is stiff when he gets up off of a chair, his arm, leg, hands are always shaking. The tremors are not a big deal to him or I and are not bothersome for him. For me it is the cognative issues that I can not deal with. THere is no win win in any situation that I face. So now I have completely withdrawn myself and have fallen into a deep depression which I am taking meds for right now. I would love any advice from anyone about how they are dealing with any of these feelings.

 

care4loved12,

 

I'm not a caregiver for someone with PD, but I do help care for my mother-in-law. I have PD and have had it for almost 9 yrs and have been married 19 yrs.

I just want to say I'm thinking of you and you are not alone here. People here care very much. Feel free to post in the open and young onset forums, also. Other caregivers do.

 

My prayers are with you,

Tonya

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Tonya, thanks for replying to my post and thanks for the encouragement. I am not on here often but do come on to read what others are going through. I am trying to be strong.

 

Care4loved1

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I would love to hear about others and how they are feeling about being lonely. I have a great deal of loneliness lately. I feel that my DH is no longer "himself" for lack of a better word. I know that I am grieving him and our marriage of 18 yrs. I feel I dont have a lot of places to turn to because not many people understand about PD and all the meds and what they can do to a person. One day he says/wants something and the next he will want something completely different than the day before. I never know what is right or wrong anymore. If I mention what he said the day before he either gets upset at me or does not remember. I can not mention to him about the PD, his meds etc he thinks that I treat him like a child (his words). Then if I dont talk about the PD he gets upset at me for not being part of it. I am so confussed on how to deal with all of this. We just had a Neurology appt and the Dr is getting him to take more requip and the sinemet will stay the same. The meds dont help with any of his tremors at all. He is stiff when he gets up off of a chair, his arm, leg, hands are always shaking. The tremors are not a big deal to him or I and are not bothersome for him. For me it is the cognative issues that I can not deal with. THere is no win win in any situation that I face. So now I have completely withdrawn myself and have fallen into a deep depression which I am taking meds for right now. I would love any advice from anyone about how they are dealing with any of these feelings.

 

I have those same feelings and responses from my spouse. Thought I was going crazy. I have noticed a significant change in personality, tremendous mood swings and cognitive issues since starting Requip. In fact the new doc may take him off it since his emotions become so intense, there is no reasoning and sometimes no remembering. I am so grateful I found this site and can communicate with others in the same situation. Most people think PD is all physical, not true as we realize how it changes relationships. My DH is 52, we have 4 kids together and managing a household single handedly is getting a bit overwhelming. Faith, prayer and these types of discussions should help. Thank you for sharing your feelings.

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I have those same feelings and responses from my spouse. Thought I was going crazy. I have noticed a significant change in personality, tremendous mood swings and cognitive issues since starting Requip. In fact the new doc may take him off it since his emotions become so intense, there is no reasoning and sometimes no remembering. I am so grateful I found this site and can communicate with others in the same situation. Most people think PD is all physical, not true as we realize how it changes relationships. My DH is 52, we have 4 kids together and managing a household single handedly is getting a bit overwhelming. Faith, prayer and these types of discussions should help. Thank you for sharing your feelings.

 

thank you for your thoughts and kind words. No reasoning has a lot to do with having no empathgy, which is so very common in PD. For me I feel so very alone. I have completely lost myself and who I am. Which in turn has put more pressure on out relationship.

 

I would love to talk thru email if at all possible sometimes it is easier. pls let me know if that is something u wish to do.

 

Thoughts and prayers are wit u through this very hard trying time.

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Hello C4L1,

As one of the younger people on here Dx with PD (and being fairly new myself) I also want to extend the hand for you to come and talk with us in some of the other forums. I also have some difficulties in talking with my wife about how I feel, and to be honest when I forget something it is embarrassing, which can lead to me being frustrated and angry.

 

Also, if possible have your husband come on here and talk, it has helped me so much to be able to open up to complete strangers, people who have no other opinion of me then what I write here.

 

I hope that things are getting a bit better, and you have found some other good caregivers who can understand.

 

Will

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care4loved12

 

How long has your husband had PD? Has there ever been a time since his diagnosis when his cognition and emotions were better? Or how long have things been the way you describe them? Do any of the changes you describe correspond to starting or stopping medications? Is he being seen by a movement disorders dr? Each of us responds uniquely to the diagnosis of PD and to the medications that are prescribed for PD. There may need to be some tweaking/adjustments of his meds. as far as his emotional state, he may be depressed about the diagnosis or the changes his body is undergoing. He may feel frustrated or like a failure that he has some how left you down because he is suddenly unable to carry the load he expected he would carry before he learned of the PD. He may feel ambivalent about his condition one day wanting you near for support and another day pushing you away that he may not burden you or feel too dependent on you. Are there any community mental health clinics you and he could go to to seek counseling together or perhaps separately at first and then later together. will you health insurance cover these visits? If not, some communities have mental health services on a sliding fee scale system. I hope you will be able to find the resources you both need to make your lives better and to experience some joy again. Good luck.

 

Eileen

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care4loved12

 

How long has your husband had PD? Has there ever been a time since his diagnosis when his cognition and emotions were better? Or how long have things been the way you describe them? Do any of the changes you describe correspond to starting or stopping medications? Is he being seen by a movement disorders dr? Each of us responds uniquely to the diagnosis of PD and to the medications that are prescribed for PD. There may need to be some tweaking/adjustments of his meds. as far as his emotional state, he may be depressed about the diagnosis or the changes his body is undergoing. He may feel frustrated or like a failure that he has some how left you down because he is suddenly unable to carry the load he expected he would carry before he learned of the PD. He may feel ambivalent about his condition one day wanting you near for support and another day pushing you away that he may not burden you or feel too dependent on you. Are there any community mental health clinics you and he could go to to seek counseling together or perhaps separately at first and then later together. will you health insurance cover these visits? If not, some communities have mental health services on a sliding fee scale system. I hope you will be able to find the resources you both need to make your lives better and to experience some joy again. Good luck.

 

Eileen

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Dear Eileen,

 

My husband has had PD for 3 1/2 yrs. I can not see a pattern with meds and his cognition. One day it is good the next it is not. Sometimes it is hourly that I notice the difference in him. His meds have been changed so much in the last 3 yrs. His pain in his legs, arms, shoulders and feet is so bad almost intolerable at times. He does have pain killers that he does take when needed. He has been tested for other things to and nothing has showed up. dr does not understand why he is in so much pain due to him not being very rigid yet. He does go to the MDC and has been for about 2 yrs. We do go to councilling together. Sometimes I think it is good but sometimes I feel the councellor does not understand the whole picture of PD. It has helped our relationship somewhat. I know that I am not who I used to be forsure since his diagnosis, which does not help the situation i am sure. For lack of a better analagy, I just have a hard time knowing who I need to be at any given time. The hard part is knowing what conversations he will remember and his thought process. He does not seem depressed and the Dr has asked him many times about depression. He is now going off the requip. Dr put him on it to help with the pain. It has not helped and he has started to get the compulsive behaviors. So I am thankful that he is going off it. Thanks for all your Q's. I like how you explained how his thoughts may be. Some of it I do believe is true. Councilling has helped with that.

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Careforloved12

 

I'm sorry to hear that your husband is in so much pain and really all of his symptoms sound very difficult for him and for you. What he is experiencing seems unusual to me but i realize there is a very great spectrum of symptoms and each of us with this disease is effected differently. I wonder if you were to pose some questions to the Movement Disorders Dr. on this site if he could steer you to any other options for helping your husband. It sounds like a very tough situation. I hope you have some friends or family you can turn to for personal support. Has anyone suggested going to a chronic pain clinic. I have always thought that pain is a difficult symptom to deal with. the very intensity of it can so color all that a person does , thinks and feels.And the intensity can vary from moment to moment at times. Perhaps that is why you see changes in him even on an hourly basis. I feel at a loss to make any further suggestions. If anyone else has any ideas, please chip in.

 

As far as the counseling. I'm glad you are going but I also hear you when you wonder if the counselor really understands. I wonder if you have any other options for counseling. You , no doubt, are doing all you can already. It might be too much to try to shift to someone else( I could understand how burdened you must already feel and as you indicated ,the grieving you feel too. It's all very much . but then...if it would make a difference, perhaps it would be worth the effort.

 

I'm asking my dear friends here to keep you both in their thoughts and/or prayers as I will too and that meaningful resources can be found to help you both.

 

Best to you both..

Please keep in touch if we can be of any support or help to you in any way. And as was already suggested, feel free to post on the Young Onset or Open forums. They seem to get more readers and responses...though posting here is quite appropriate. Anyone know of any other forums for caregivers that gets a bit more action? Let us know.

 

Eileen

Edited by woodbee

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I would love to hear about others and how they are feeling about being lonely. I have a great deal of loneliness lately. I feel that my DH is no longer "himself" for lack of a better word. I know that I am grieving him and our marriage of 18 yrs. I feel I dont have a lot of places to turn to because not many people understand about PD and all the meds and what they can do to a person. One day he says/wants something and the next he will want something completely different than the day before. I never know what is right or wrong anymore. If I mention what he said the day before he either gets upset at me or does not remember. I can not mention to him about the PD, his meds etc he thinks that I treat him like a child (his words). Then if I dont talk about the PD he gets upset at me for not being part of it. I am so confussed on how to deal with all of this. We just had a Neurology appt and the Dr is getting him to take more requip and the sinemet will stay the same. The meds dont help with any of his tremors at all. He is stiff when he gets up off of a chair, his arm, leg, hands are always shaking. The tremors are not a big deal to him or I and are not bothersome for him. For me it is the cognative issues that I can not deal with. THere is no win win in any situation that I face. So now I have completely withdrawn myself and have fallen into a deep depression which I am taking meds for right now. I would love any advice from anyone about how they are dealing with any of these feelings.

hi. i realize that it is difficult living with someone who is in pain and is going through emotional problems, as well. i have pd. and i am also married. being a caretaker is a difficult job, especially when one is so close to the person. it is hard to be objective in this situation. you have needs as well as your husband. are you taking care of yourself? sometimes , we need to reach out to friends and family for support when we are going through a difficult time. we need to be good to ourselves, do nice things for ourselves. i spend a lot of time painting and reading books that comfort me. i buy myself something nice to wear, or even yellow nail polish, to brighten up my life. sometimes, little things help us. we can't get everything from our partners, especially when they are going through their own struggle....and of course pd is a rough struggle. is there a pd support group where you live, one for caretakers as well? good luck.

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Hello, I, too, have a spouse that is going through similar symptoms and I, too, am at a loss on how to deal with it. My only outlet is to talk with my oldest daughter. This has been helpful. To read this blog is helping me, as I thought I was the only one with a loved one that shifts from being nice to naughty in his thoughts, words and actions. My daughter gave me these words of encouragement, and that is, do what your heart feels is right. He seems to go through a lot of what I perceive to be paranoia, worried about money, worried about where I am and why it took so long; worried about, well, you get the "gist." It is good to know that I will follow my heart, be strong. God gave me this challenge, and must know that I can handle it. Thanks for the postings - will do more later! :)

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I would love to hear about others and how they are feeling about being lonely. I have a great deal of loneliness lately. I feel that my DH is no longer "himself" for lack of a better word. I know that I am grieving him and our marriage of 18 yrs. I feel I dont have a lot of places to turn to because not many people understand about PD and all the meds and what they can do to a person. One day he says/wants something and the next he will want something completely different than the day before. I never know what is right or wrong anymore. If I mention what he said the day before he either gets upset at me or does not remember. I can not mention to him about the PD, his meds etc he thinks that I treat him like a child (his words). Then if I dont talk about the PD he gets upset at me for not being part of it. I am so confussed on how to deal with all of this. We just had a Neurology appt and the Dr is getting him to take more requip and the sinemet will stay the same. The meds dont help with any of his tremors at all. He is stiff when he gets up off of a chair, his arm, leg, hands are always shaking. The tremors are not a big deal to him or I and are not bothersome for him. For me it is the cognative issues that I can not deal with. THere is no win win in any situation that I face. So now I have completely withdrawn myself and have fallen into a deep depression which I am taking meds for right now. I would love any advice from anyone about how they are dealing with any of these feelings.

 

Hello. The grieving process is DABDA: Denial, Anger, Bargaining, Depression, Acceptance.

 

You may have denied, been angry about the condition or may have bargained about some things, depression is part of the cycle. Once you rebound from your depression, when the time is ripe, you will accept all these things and work your way to resolving all the things that concern and worry you.

 

In the meantime, try to keep up the faith and surrender everything to the mightier being. We feel for you.

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Dear Care4,

I am a newbie here, but your post was so, what I am afraid of! The loneliness. My DH has been on meds for the past 6 months, and he sleeps a lot. I am 10 years younger, and feel lonely too sometimes. Thank goodness that I have a job, friends - but they don't really know what it is like.

I am hoping that Site will be a place where we can support each other . I am a nurse-counselor but am struggling to deal with this change in our future. So together we can all help each other.

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I would love to hear about others and how they are feeling about being lonely. I have a great deal of loneliness lately. I feel that my DH is no longer "himself" for lack of a better word. I know that I am grieving him and our marriage of 18 yrs. I feel I dont have a lot of places to turn to because not many people understand about PD and all the meds and what they can do to a person. One day he says/wants something and the next he will want something completely different than the day before. I never know what is right or wrong anymore. If I mention what he said the day before he either gets upset at me or does not remember. I can not mention to him about the PD, his meds etc he thinks that I treat him like a child (his words). Then if I dont talk about the PD he gets upset at me for not being part of it. I am so confussed on how to deal with all of this. We just had a Neurology appt and the Dr is getting him to take more requip and the sinemet will stay the same. The meds dont help with any of his tremors at all. He is stiff when he gets up off of a chair, his arm, leg, hands are always shaking. The tremors are not a big deal to him or I and are not bothersome for him. For me it is the cognative issues that I can not deal with. THere is no win win in any situation that I face. So now I have completely withdrawn myself and have fallen into a deep depression which I am taking meds for right now. I would love any advice from anyone about how they are dealing with any of these feelings.

 

My eyes got stuck to your seemingly innocent actions being tagged as "treating like a child". I can relate to this somehow.

 

As much as possible, especially during the adult stage of an individual, it is best to let him act like and adult.. someone who can take care of himself. This is how ego works for all of us and the reaction of your hubby is but normal.

 

I would advise you to sift this problem through, talk to him and hopefully, everything turns out well. GL!

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Dear care4loved1

My husband was DX with Parkinson's about 10 years ago. He's 58 now. As of late, I'm noticing more and more memory issues and changing of mind sometimes in rapid succession. He also has serious issues with compulsive behavior and that problem is without a doubt the most difficult for me. Funny thing is, he only takes Sinemet for his symptoms. The neurologist has told me Sinemet alone can also cause OCD. Part of obsessive compulsive disorder manifests itself in rather selfish and childish behavior. I must agree with you that the mental disruptions of this disease are quite a surprise. It took me some time to understand what was happening to my husband. Sadly, the physical issues and mental issues prove to be too much for many people to handle or understand, leaving us alone most of the time. I'm 52 years old and spend most of my time home with my husband. I hope you find some happiness somehow. It's a difficult road to walk alone on.

Take care,

Michelle

 

 

 

 

 

 

 

Dear Eileen,

 

My husband has had PD for 3 1/2 yrs. I can not see a pattern with meds and his cognition. One day it is good the next it is not. Sometimes it is hourly that I notice the difference in him. His meds have been changed so much in the last 3 yrs. His pain in his legs, arms, shoulders and feet is so bad almost intolerable at times. He does have pain killers that he does take when needed. He has been tested for other things to and nothing has showed up. dr does not understand why he is in so much pain due to him not being very rigid yet. He does go to the MDC and has been for about 2 yrs. We do go to councilling together. Sometimes I think it is good but sometimes I feel the councellor does not understand the whole picture of PD. It has helped our relationship somewhat. I know that I am not who I used to be forsure since his diagnosis, which does not help the situation i am sure. For lack of a better analagy, I just have a hard time knowing who I need to be at any given time. The hard part is knowing what conversations he will remember and his thought process. He does not seem depressed and the Dr has asked him many times about depression. He is now going off the requip. Dr put him on it to help with the pain. It has not helped and he has started to get the compulsive behaviors. So I am thankful that he is going off it. Thanks for all your Q's. I like how you explained how his thoughts may be. Some of it I do believe is true. Councilling has helped with that.

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Dear care4loved1

My husband was DX with Parkinson's about 10 years ago. He's 58 now. As of late, I'm noticing more and more memory issues and changing of mind sometimes in rapid succession. He also has serious issues with compulsive behavior and that problem is without a doubt the most difficult for me. Funny thing is, he only takes Sinemet for his symptoms. The neurologist has told me Sinemet alone can also cause OCD. Part of obsessive compulsive disorder manifests itself in rather selfish and childish behavior. I must agree with you that the mental disruptions of this disease are quite a surprise. It took me some time to understand what was happening to my husband. Sadly, the physical issues and mental issues prove to be too much for many people to handle or understand, leaving us alone most of the time. I'm 52 years old and spend most of my time home with my husband. I hope you find some happiness somehow. It's a difficult road to walk alone on.

Take care,

Michelle

Very interesting, I just started this forum, and keep getting new insights. thanks for sharing. I to notice my husbands moods change. I do notice if he is tired it correlates to more irritable and being unreasonable, and if to many things are going on around him he seems to deteriorate. i noticed the comment about selfish behavior. Of late I have noticed that with how he deals with our teenagers, very self centered. He is newly diagnosed but it has been going on for awhile we just hadn't put the pieces together.

 

In research it's very depressing because there is no much they don't understand. the only treatment options are medications and the side effects alone are terrible to deal with in many ways I don't feel we are helped very much.

 

I am a nurse and am very much an advocate for my patients. It's heart wrenching when it is your husband who you love. For us the mood personality issues are harder to deal with compared to the motor issues. Most people think of PD as motor problems but it is so much more.

 

We now realize his depression that has been around for a long time was related to PD, he functioned and I was really the only person that knew of his struggles. I find it hard to believe that it isn't a part of the disease for everyone but because they are not in touch with there feeling etc it is under diagnosed and not discussed. Drs are trained to assess motor function, we are the ones that brought up the depression part, no questions were asked when my husband was assessed.

 

 

i notice my husband is much easier put of balance when we are having issues with one of out children. In my knowledge of other neuro conditions what comes to mind is system overload. With Pd there are parst of the brain that have missing links so it makes sense that normal copping behavior is disrupted.

 

I can totally relate to what you are talking about and it is hard to communicate that with someone unless they have lived with this. I still think it happens to more people but they don't have the insight to know what is going on. Yet you do read everyones experience is different. which makes me wonder if they there are still different types of PD they haven't categorized yet.

 

ok I'm rambling,

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Hello "Rambling" :-):rolleyes:

 

It's good to get it off your chest, even if it's with a total stranger. I agree with you that we don't get much help in this matter of the mind. Doctors place much attention on movement and little on the rest. When I tried to talk about OCD I was quickly dismissed. We are left to try to understand this and deal with it on our own. Your kids are probably a bit confused to say the least!

 

I hope you can find some answers out there...and if you do please share!

Take care,

Michelle

 

 

Very interesting, I just started this forum, and keep getting new insights. thanks for sharing. I to notice my husbands moods change. I do notice if he is tired it correlates to more irritable and being unreasonable, and if to many things are going on around him he seems to deteriorate. i noticed the comment about selfish behavior. Of late I have noticed that with how he deals with our teenagers, very self centered. He is newly diagnosed but it has been going on for awhile we just hadn't put the pieces together.

 

In research it's very depressing because there is no much they don't understand. the only treatment options are medications and the side effects alone are terrible to deal with in many ways I don't feel we are helped very much.

 

I am a nurse and am very much an advocate for my patients. It's heart wrenching when it is your husband who you love. For us the mood personality issues are harder to deal with compared to the motor issues. Most people think of PD as motor problems but it is so much more.

 

We now realize his depression that has been around for a long time was related to PD, he functioned and I was really the only person that knew of his struggles. I find it hard to believe that it isn't a part of the disease for everyone but because they are not in touch with there feeling etc it is under diagnosed and not discussed. Drs are trained to assess motor function, we are the ones that brought up the depression part, no questions were asked when my husband was assessed.

 

 

i notice my husband is much easier put of balance when we are having issues with one of out children. In my knowledge of other neuro conditions what comes to mind is system overload. With Pd there are parst of the brain that have missing links so it makes sense that normal copping behavior is disrupted.

 

I can totally relate to what you are talking about and it is hard to communicate that with someone unless they have lived with this. I still think it happens to more people but they don't have the insight to know what is going on. Yet you do read everyones experience is different. which makes me wonder if they there are still different types of PD they haven't categorized yet.

 

ok I'm rambling,

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Dear care4loved1

My husband was DX with Parkinson's about 10 years ago. He's 58 now. As of late, I'm noticing more and more memory issues and changing of mind sometimes in rapid succession. He also has serious issues with compulsive behavior and that problem is without a doubt the most difficult for me. Funny thing is, he only takes Sinemet for his symptoms. The neurologist has told me Sinemet alone can also cause OCD. Part of obsessive compulsive disorder manifests itself in rather selfish and childish behavior. I must agree with you that the mental disruptions of this disease are quite a surprise. It took me some time to understand what was happening to my husband. Sadly, the physical issues and mental issues prove to be too much for many people to handle or understand, leaving us alone most of the time. I'm 52 years old and spend most of my time home with my husband. I hope you find some happiness somehow. It's a difficult road to walk alone on.

Take care,

Michelle

 

Hi Michelle.

I am new here. My husband was diagnosed with Parkinson's in 1999. He is now 57 years old. He is on Sinemet and Azilect, and had DBS surgery in 2003. He too has many mood swings - from nasty and miserable to nice. But when I tell him he is being nasty and miserable, he blames everything on me. It's me that is miserable, etc. This is very hard to live with. I choose to just let these things slide, as in the grand scheme of things, it's not really that important. However, sometimes it is really hard. At this point we are having a disagreement regarding sex. I don't know if I want to get into it on a public forum, but it is causing many a heated discussion. It is my husband's issue, not mine. But it is not a problem for me. Apparently it is a big problem for him. And I can't seem to convince him that it is not something to spend so much time arguing about. Dealing with the many highs and lows of a PWP's moods can be very difficult on a daily basis.

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I find NPI caregivers forum and "Ask the Doctor" to be very very helpful. I find answers to our problems that far exceed what my husband's neurologist has ever been able to offer. I hope that soon, something comes along --medicine--that has a gentle way of

treating Parkinson's without all these horrible side effects!! Mind, Mood and Memory are effected by both Parkinson's and the medicine used to treat the disease. Each day proves to be yet another challenge for us all!

Take care fellow caregivers!! 8)

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Hello,

 

I am new to this site and I am not quite sure how to get started. But my husband has PD and is 85. I am 58 and I am finding it very hard lately to cope with the progression of his disease.

 

He was not diagnosed until late in life, about 6 years ago. He does not have tremors but stiffness of trunk.

 

I have read some of the stories here in the forum and I am very interested in just how much Medicare would do for us in order to help me keep him home and how I go about finding some time for myself and not feeling guilty about taking him with me when I do go out.

 

He is no longer able to be left alone and I have wonderful neighbors who come stay for awhile now and then when I really have to get something major done outside the home.

 

His medication is now causing dementia, just as someone noted in another story. We have good days and bad days but more bad than good lately. I really am finding it hard to take care of me..... I don't wish to be selfish but I don't sleep well as he needs some assistance during the night, I don't leave the house much anymore as I feel like I need to take him with me and I am beginning to resent just being here now in this situation. I love my husband very very much and he is my biggest supporter but GOD THIS IS HARD!

 

Any inexpensive suggestions would be appreciated and I guess I need to contact Medicare about what they would cover or not.

Thanks in advance for sharing and thank you for this website for which I may obtain information and help.

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Dear care4loved1

My husband was DX with Parkinson's about 10 years ago. He's 58 now. As of late, I'm noticing more and more memory issues and changing of mind sometimes in rapid succession. He also has serious issues with compulsive behavior and that problem is without a doubt the most difficult for me. Funny thing is, he only takes Sinemet for his symptoms. The neurologist has told me Sinemet alone can also cause OCD. Part of obsessive compulsive disorder manifests itself in rather selfish and childish behavior. Michelle

 

I wanted to say that my husband has been suffering from Compulsive obsessive delusion for about 18 months now, So it preceded finding out he had PD and obviously preceded any meds for it.

This delusion had to do with a woman he used to work with I won't go into too much detail but it has been the hardest time of my life since I found out. Anyway when he got the PD diagnosis and started on Sinemet, and later on Stevelo , it made no change in this particular situation. HOWEVER, an event a couple weeks ago, a business trip he took, led to a total change and I have my husband back and he realizes that that whole thing was in fact a delusion and that his compulsive behaviors related to it were just that. I Pray that the nightmare is in fact over, it seems to be. I don't know if now knowing that he was delusional on this and can be so will help avoid such things in the future, When I tried before to tell him it was a delusion or that his behaviors had become compulsive and out of character he would not listen, He says that he did not believe such things could happen to him so it had to be real, but that he now DOES realize it did happen to him and it was not real and will be and is more concerned with his mental state.

I am so relieved that this even it over, but I have no way to know what the future will hold in that area.

I do know though that it was the illness itself and not any Meds that was the cause of the delusional, compulsive obsession.

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I totally understand, have empathy and can relate to all your posts. I have had mood swings for years, but haven't had the most supportive family either (that's another story). I have a mother who has her own issues, and has always been more business than nuturing. I am an only child. I have a dx of PD, and my husband has a dx of bi polar, so it has been the blind leading the blind, and neither of us have spoken much or been close to our families (prob what brought us together in the 1st place). That being said, aside from medical issues (let's not forget that PD is a chemical imbalance in the brain to begin with), we've both had it environmentally for years. This made the medical side of things harder. Everyone needs a support blanket, and this fourm is a great place to find it, no matter what dynamics you have or where you may be coming from. Everyone is understanding and listens. You will find you will meet some really nice people here that you can vent to. On top of the dopamine loss, the frustration of figuring out the right meds, their side effects, and the feeling of your feet being attached to the ground are enough to make anyone frustrated. It is one thing for others to work against you, but when your body works against itself, ugh! It is like when you stub your toe and you automatically scream...but with PD, it is all too often. It is a struggle, in multiple ways, but hopefully your husband will find the right meds. I know it has taken about a year for me. I know many that have taken longer, and I am blessed the Sinemet worked so well for me. Considering that there is no cure and that the disease is progressive, we will all have future struggles, but hopefully there will be a cure soon. I feel for your struggle though....for both you and him. Good luck!

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I have those same feelings and responses from my spouse. Thought I was going crazy. I have noticed a significant change in personality, tremendous mood swings and cognitive issues since starting Requip. In fact the new doc may take him off it since his emotions become so intense, there is no reasoning and sometimes no remembering. I am so grateful I found this site and can communicate with others in the same situation. Most people think PD is all physical, not true as we realize how it changes relationships. My DH is 52, we have 4 kids together and managing a household single handedly is getting a bit overwhelming. Faith, prayer and these types of discussions should help. Thank you for sharing your feelings.

hi, hi everyone,

i have pd for about four years.while the dieease has affected me physicaly emotionaly i'm better than ever.i use to be a nervous patient and had to overcome nervous symptoms like what is called depression and anxiety.

What has made me well is now i have a habit of spoting my emotions and tempermental reactions.i firmly belive others who have pd can be emotionaly well throughout this disease using this method of spoting..this group is 75 years old this year.www.lowselfhelpsystems.org

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