How Many Patients have Noticed that they Lost Most or All of their Self-Confidence, when they started with their Pd?

When we lose our self-confidence, we stop being in control of our lives. We tend to abdicate that control to other people or to medication or to both. Why is this? Why do we lose our confidence? I hope that some professionals can answer this question.

27 Replies

oldestnewest
  • Dopamine is much more involved throughout the brain than just movement functions. It is a powerful reward neurotransmitter. Addictions are frequently an absence of dopamine in the reward centers due to poisoning effects of drugs. It is frequently a process occurring in the PD patient before motor symptoms surface. Anxiety and depression plus sleep disorder. Can you see how one loses confidence if the physiology is screwed?

  • Hi Etterus. I am pleased to see a person with more medical knowledge than I have, explaining how this happens.

    My motivation for writing this post was to make patients and carers aware that this is a major problem with Pd. If we give up on ourselves and have no confidence to fight the good fight, we are basket cases.

    I would like others to tell us all how they managed to overcome this loss of self confidence?

    I found that when I was allowed to fasten my shirt buttons or put on my shoes and socks I got pleasure out of doing these tasks unaided. It gave me back some confidence. It all helps to rebuild our confidence. But it goes deeper than that. People tend to talk about us as if we were not capable of understanding what they are talking about.

    Although our brains are damaged our intelligence is not impaired. Why do they treat us as if we had suddenly become simple?

    John

  • YES-MY RESPONSE TO MY DBS PROGRAMMER WAS IMMEDIATE WHEN HE ASKED HOW I FELTLAST WEEK WHEN THE MECHANISM WQAS TURNED ON --ONE WORD CAME OUT OF ME "DIGNIFIED"

  • Hi movinggroovin. You were very brave to let someone dig a hole in your head and inplant a foreign object.

    John

  • Hi john! Thanks! hear that a lot these days! Feels good to hear, I think that simply living with Parkinson's day in and day out makes you a courageous person in my book! I was a psychologist in my prior life and work and worked with many traumatized survivors during those 30+ years. I would love to write a book on a theory I have been cooking about P.D.-it seems to me that it is in essence PTSD turned inside out. If I am right then we are all a bunch of courageous survivors. After all, when you think about it, a hole in your cranium is a small price to pay for quality of life and giving yourself time to get to the cure for this nastiness. LOL--Nansy

  • Hi Nancy. Please excuse my ignorance but what is PTSD?

    I would love to talk to you about your theory. Could we do it by email - johnpepper@telkomsa.net Please.

    Kind regards

    John

  • Post Traumatic Stress Disorder

    I will email you my phone number -perhaps Skype?

  • Hi Movingroovin. Thanks. I have only used Skype once ,over five years ago. I have it on my laptop. You may have to be a bit patient with me.

    Kind regards

    John

  • Patience in Plentitude here buddy!!

  • can i ask where u got your DBS? I am thinking it might be an option since I feel I have tried alot and I am progressing fast and Sinemet doesn't work anymore!

  • where did you get your DBS? I think I have had it with the exercise and the meds that don't work, what is so brave about getting surgery when I've been suffering for 2 yrs. I walk everyday, eat good, and yes I have sucumed to the meds, but I don't have anything left but faith.

  • You are always reminding us of the important things; control your own body; control your destiny.

    I think aging, when we give over control to others affects self-confidence. Of course when it takes me twice as long to put on my makeup....something you guys maybe don't have to worry about, it can fall into losing confidence.

  • Hi Racer. First of all, I thought you were a man. Maybe you could be, but not by the way you spoke in your post. No! We do not have a problem putting on make-up. taking it off yes, but that is not what you are talking about.

    This man's problem occurs in the middle of the night, when I have to go to the loo, which is quite often. I refuse to sit down to urinate so I have to stand. I don't like to turn the lights on, because it disturbs my wife, who has enough problems of her own with sleeping.

    The problem is that in the morning I am often told that I 'missed'. Now how can that be? I have been doing this for eighty years, less a couple for when my mommy held it for me.

    How this takes away my confidence! Surely I know where I am aiming. I have the bowl firmly located between my knees, so where am I going wrong? At least you can see your face and you know where you are putting the make-up, but that is the same with me. It does not work out the way it always used to.

    John

  • Hi John - I too would like to hear / see a Specialist opine on this manifestation of PD. As I think I've probably told you in our many Email exchanges that I have transformed from, a very confident person who loved nothing better than being in the centre of attention to one who goes out of my way to avoid attention and meeting people.

    I do go to social events when I feel I must go for the sake of my partner but I don't like them.

    This is, by far and away ,the biggest change Parkinson's has meant for me

    Kind regard

    PS I think Etterus has got it right - it is yet another manifestation of the lack of Dopaine

  • Hi Froggatt. Yes! being with people is difficult. I have been forcing myself to carry on doing what I have been doing all my life. For ten years I did what you do. I did not go visiting friends and only saw close family. I was a recluse. However, when I realized that I had to pull myself together and start doing things socially.

    I have been entertaining old people since I was in my mid twenties. I stopped in my sixties because I was forgetting my words and my voice was not anywhere near as powerful as it always had been. I started in a small way, in our retirement village. I agreed to sing at special functions. I sang at the Christmas dinner and at the Scottish and Irish evenings. I know all the songs I intended singing but when it came to singing, the wheels fell off. I forgot words and could not reach the high notes. I was a has-been. But I was the best has-been they had, so they put up with the problems and egged me on.

    Last Sunday, I entertained some old and new friends to a lunch to celebrate my eightieth birthday, in my new retirement village. Instead of making a speech I said I wanted to sing a song to them. Most of them did not know I could sing, so they were all ears. I chose to sing my late wife's favorite song, so that I brought her there to celebrate with us.

    Before I even started, I got all choked-up. I realized I was being stupid but I was in the deep end, I pulled myself together and got through the first verse and chorus and half way through the second verse, when I went totally blank. My singing was good but the memory left a lot to be desired. I stood there in front of eighteen people and had no idea what the words were that I was looking for. So I said I am not giving up, I would start singing the second verse again. Fortunately I just relaxed and the words came automatically, as they usually do. I finished the song, all choked up, but feeling happy. I told everybody why I had chosen that song and they then understood the situation. Everybody felt very moved by what had happened.

    This week I have agreed to sing at a Pd support group meeting and I am busy preparing for it now. I don't want a repeat of Sunday's performance. I might not get away with it a second time.

    I am much more confident now but still have a long way to go.

    Good luck

    John

  • John, Thank You so much for this great question!!!! It is something we don't talk about. PD can hit people hard and they lose their sense of competency and ability to socialize. They telescope their thinking to what might be the end stages of the disease (or not!!!) And they fear being helpless and dependent. It's traumatic for most people (IMO) to get the diagnosis.

    My husband was always a well-liked, socially aware person, who put others at ease. At work he was the person everyone went to with problems. It was so hard to see him lose confidence. But we've worked so hard at this. He knows by now that his family and health team will be with him "no matter what"! He knows to his core that each person has dignity and worth No Matter What!

    A couple years after diagnosis I was co-leading a class and my husband (person with PD) attended. He was uncharacteristically over-awed by these people and that came from within him. The confident, steady guy felt like he didn't belong there, apparently. Now he's much more confident and able to interact as an equal. He's on an anti-depressant and his sleep apnea is being treated. And he's worked so hard to get his old ease and confidence back. He had in the past, some bosses who were brutal in being harsh, unfair, and judgmental about his and other employees worth. I think that he went into that hard place where he felt unable to stick up for himself. It's like PTSD.

    Since we were both ministers late in our work life, this has a spiritual dimension. In fact the phrase used by our denomination, Unitarian Universalist, comes from our principles. We are to 'honor the dignity and worth" of every individual we encounter in life. (If there's a harder principle to live one's life by, I don't know what it is!)

    We are having a holiday lunch with some of my high school classmates (class of 1961) this week and he knows only one other person. These are genial, kind people. I hope he will enjoy their humor and the camaraderie just like the rest of us. Clearly he has come a long way.

  • Hi Quirkyme. I have found that every time someone had to help me achieve a mundane task, I lost a bit more of my confidence. As you so rightly say, "They telescope their thinking to what might be the end stages of the disease (or not!!!) And they fear being helpless and dependent" WE don't really know we are doing this. We get to the stage where we only look back on our lives and not forward to the future. With Pd, we tend to think that we have no future.

    Carers should think carefully before they help their patient to do something, because he/she appears to be struggling. If you do that, you take away one more task which she/he has always been able to do without having to even think about it. WE soon get to the stage where we can't do anything for ourselves.

    Helplessness is the result of no longer being able to help ourselves. Let us struggle, we get there in the end and get some feeling of achievement.

    if we are trying to, "honor the dignity and worth" of our fellow man we have to let him/her struggle to do things for themselves.

    John

  • John, Thank you for what you wrote above. It helps me see our coping with PD in a wider sense. I think you are onto something that needs to be incorporated in daily life of PwPD and care sharers. I think my husband was scared of a short course of the illness (of dying quickly) and let himself fall back. And yes, you do feel good, you feel more self-esteem when doing more for yourself. It takes hard work and perseverance. It takes determination and self-discipline. It helps if the PT and other professionals set up a schedule, (diet, plan of care) that we will agree to and then check back to see if it's working. And every time one back slides, you go back a notch.

    The problem for carers is that PwPD are slowed down. I see this in myself. It is so much quicker, esp. when running late, to zip that zipper, tie that shoe, help someone with their pants, take the elevator, etc. etc. At times I will do these things even when we know it's a disservice to him, because it's important to for us to be at appointments on time.

    If you add in 'off times' with meds, getting the balance right is often a work-in- progress. If he misses stretching and walking for one day, he is letting himself down. That' why I think the antidepressant /serotonin level piece is important. It has been for him. PD is demoralizing, or it can be. We need to know that from the first and work every moment to use what's called positive psychology. As the old book title puts it, "You Can't Afford the Luxury of a Negative Thought." If one is mildly depressed and/or has "seasonal affective disorder" (SAD) the person may not know to get help.

    We've been married almost 50 years and are very compatible but this even tests us every day. Some things I have to let go. Sometimes we negotiate. Some things I will press and often it doesn't work out. (He's been off the sleep apnea machine for a year and says he's going to resume). It calls for a moment-to-moment checking in with each other. I don't know how people who are alone do it. Seriously! I have so much compassion for those who are facing this without someone by their side. Maybe there are people who do better that way, I don't know.

    Again thanks for asking the question and indeed, it is time to look at the nuances of care, the helpful tips, what works for others--and then compare. I keep thinking that Big Data (putting all these individual factors, like meds, exercise levels, diet, length of time since diagnosis, etc. etc.) into a computer and crunch the numbers. I think that's the next thing to help. To do this we have to assess where PwPD are through time and record one's progress in staying healthy (one hopes) and stable.

  • Hi Quirkyme. Thank yo for such a good respons to my question!

    Now I am getting to know you better and warm to what you have said here. I am so used to having to defend my views, which is possibly the worst way to react to criticism.

    You say many pertinent things here which should be discussed further. For instance, when to help and when to leave the patient alone!

    How can Carers and friends boost a patient's self esteem? How can carers and friends make us feel 'normal'. You know what I mean? Normally, we don't speak to each other in guarded terms. We say things as they are. But with Pd patients, people tend to be different. I want to be treated as 'normal'. I want to be teased and criticized, when I do things wrong or break something, which I often do. Does that make sense?

    When someone is dying, we all tend to treat them in very caring ways. But we are not dying! We don't die of Pd! We want to LIVE as much as anybody else.

    We often need a lot of prodding and encouragement to do better, it does us good.

    My late wife and I were married for 51 years and the best thing she did for me was to treat me the same way she had always treated me. I had to do everything for myself, including the washing-up. The kitchen of our retirement village was too small to get a dishwasher in, so we had to wash the dishes by hand, and that was my job. I appreciated that more than anything else. It meant that I was still USEFUL!

    My new wife was married for 49 years to a Parkinson's sufferer. He had Pd for 22 years. What sort of a woman would marry a Pd patient after having spent 22 years with one? I'll tell you the answer to that question, A VERY CARING WOMAN !

    Having only taken an MAO-b inhibitor, it did not matter when I forgot to take one. In fact it took at least six weeks before I noticed any change in symptoms, if I stopped taking my medication. I did that twice, before I finally gave up taking them. On both occasions the symptoms made themselves noticeably worse, especially the clumsiness. On a daily basis, while using levodopa medication, patients notice immediately that they need more medication. I don't know what it is like to be 'OFF'. Thank heavens for that!

    John

  • I think we got off on the wrong foot so yes, let's make a new start. We went to a holiday gathering with several of my friends from high school yesterday. Members of the class of 1961, they welcomed him in and he enjoyed some of their congeniality. I think it's been lonely for him and though he's not a macho man, I think it will be nice for us to have a group our age to socialize with. Everyone needs to belong.

    Your wife (first and second) sound like they have set some good boundaries. Some of the wives in the PD group I lead say, "I just want to do more for him" meaning help him more, support him." But lately I've been noticing that I have to 'manage' him (like insisting he go to this luncheon) and insist he manage certain tasks on his own.

    He enjoyed himself with the group. None of them has PD but each one of them came up to him and shook his hand and told him to come back. That kind of acceptance is priceless as is the feeling of belonging. He asked me this morning, "how did I do?" and I said, "do you feel like you had to 'do well' with them? The object was just to have a good time. And we did." So here was another place beside PD group where he could struggle a bit eating and lose the words he wants to say in conversation, and it was okay. At 71 we all can struggle to find words.

  • Hi Quirkyme. Thanks for your intro. We do all need to belong, even if we stray off the path occasionally, it is nice to come back into the fold and realize that we are part of a bigger whole.

    We had a Christmas party on Friday at one of the support groups I attend. I agreed to sing for them, as they asked us all to do something to entertain everyone. I have had problems with singing for quite a while. Even at the age of 80 my voice is still good but my brain lets me down all the time. I took the precaution of printing out the words, in large letters, of the songs I wanted to sing, but I was shaking so much that I had to put them down on a pile of stacked chairs. I know the words so well, having sung those songs for many years. But my brain went blank and even though I could see the words on the paper I could not sing them. So, I stopped and then composed myself and started again, but reading the words this time. I became so emotional towards the end that I got all choked up. But I finished the first song, to everyone's relief. I managed three songs in the same fashion. Although it was far from good, everybody enjoyed it. I don't think that I will ever overcome this problem. The body is strong but the brain is weak!

    I also had an 80th birthday party the previous weekend at our retirement village for twenty people. Instead of making a long speech, after welcoming everyone, I decided to sing my late wife's favorite song. I just felt that I needed to bring her into the celebration, as she had been so good to me during our 51 years together. The same thing happened there. I got half way through and went blank. I was also very emotional and got all choked up as well. It must have been quite embarrassing for my friends but they said it was very moving. I don't know why I put myself through all these experiences. I should forget that I used to entertain people and accept that it is now out of the question; it just does not work!

    However, having said that, I felt very proud that I had managed to do both of these 'performances', because I have not been able to get myself to sing for twenty years. I used to entertain the 'old people' since the early 1960's and then lost all my confidence soon after being diagnosed in 1992, when I made a complete mess at a concert in front of mostly ladies, who were probably only there to have something to eat and drink and to have someone to talk to. I was scraping the bottom of the barrel.

    You keep up the good work with your husband, and anybody else in your group who needs to get a confidence boost!

    Kind regards

    John

  • Happy Birthday, and many more good years. We are also singers and know that it is so good for singer and hearer. There's so much emotion that gets conveyed. Hope after that emotional re-start you won't give up.

    Grief is funny (not haha!) in that it comes back full force at times. We can get waylaid by emotion. But still, sharing sone, emotion and all, is a gift to your listeners. I used to get nervous early on and then I told myself to 'give it as a gift'. It's a gift to your listeners and thus easy to give. Glad you may be reclaiming that part of your life.

    will add some more tomorrow.

  • Hi Quikyme. Yes! I love sharing my gift with others, especially older people, who like listening to my kind of music. Thanks for the encouragement, it certainly helps.

    John

  • John, I suspect that some people see their own fragility and fear when they see disability.

    Also, the best way to overcome anxiety is through meditation,exercise involvement in activities plus judicial use of meds. I also think the lyrics from Whitney Houstons version of "The greatest love of all"' .... Learning to love ones self, is fundamental to dealing with our challenges.

  • Hi etterus. It is very difficult to love ones self, because we are our own greatest critics. We tend not to remember the things we do well but to remember the things of which we are not proud. We remember our mistakes, because it is from them that we learn. We learn nothing from a job well done. Thinking about our successes tends to turn us into swollen-headed egotists, and nobody likes them. A little bit of humility does not do any of us any harm!

    John

  • Hi etterus. Seeing others as fragile as ourselves is good for us, but difficult to get used to. It helped me to accept that I was no longer the outgoing person I used to be, but a 'shop-soiled relic' that nobody wants anymore. It helped me to come to terms with myself when I told everybody I met that I had Pd and I was not drunk. I was able to get solace from others who had been through the same experience. In my first support group, we all gave each other some sort of solace. But that did not help me to regain my confidence. It was only when my late wife started to make me do everything for myself, like dressing and eating. I just had to find different ways of doing things, otherwise I could not succeed. Yes she did eventually have to help me sometimes, when it became quite apparent that I was not going to be able to get my socks on or my shirt buttons fastened. But I was not reliant on her.

    I have never listened to Whitney Houston, as I am locked in a time-warp in which I only listen to classical music. I can't stand the thump-thump-thump of modern music. I do however know a lot of music and lyrics that have lately made me feel good about myself.

    I have never felt ashamed of having Pd, as it was not the result of my own bad behavior. But I did not love myself! When I was finally diagnosed, I felt like a failure, someone who is looked down upon by others. It has been a difficult task to change that around. I don't think I have ever had a good opinion of myself, probably due to failing my final school exams and not becoming someone to whom everybody looks up.

    Even when I had made my mark in business, I still did not have any feeling of self-worth. I was so used to being ashamed of not having any degree. I was mixing in very elevated circles, where I was very much the odd man out. But I had achieved a great deal, the hard way, and that should have made me feel good about myself, but it didn't.

    Somewhere over the past ten years, I have now become proud of my achievements and of what I am able to do to help others. That has made me feel good about myself.

    Kind regards

    John

  • Keep singing everyone . It's the best medicine of all . Lifts your spirits while exercising your mouth tongue and throat ..

    Long before diagnosis my husband out of the blue asked if I would start to make all the decisions . He shouldn't have asked it was what I had always done anyway .lol

    I thought he was being sarcastic .!! He was serious , he became nervous avoided company . Couldn't stand to talk to someone .

    Always a very socialable man ..

You may also like...