Helping Those Who Care for Parkinson's Patients
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Is anyone's loved one on antidepressants? Are they working? I'm seriously considering asking my husband to go back on some, even though he claims that they don't make a difference. We have been toughing out the past 6-8 years without them, and it's gotten bad. Im actually too exhausted myself to go into the details. Suffice to say that everything is bad, life sucks and will always disappoint you and never get better, problems are insurmountable and catastrophic, and every bump is cancer (paraphrasing). We are at the point where every night consists of my coming home from work, making dinner, and trying to find ways to kill two hours until bedtime while he recedes to the garage to recharge, where he won't come out until after I've gone to bed. I've tried many, many things....interests, activities, interactions...but he's so sick and in pain all the time that that's all he can focus on. And I get that, but the quality of life has gone down shockingly quickly in comparison to his actual condition. This year so far it's sinus polyps that are causing him headaches. Last year it was issues with our cancer dog, who we finally put to sleep. Before that it was an adult child staying with us and disrupting our routine. I've finally quit trying to share books (he can't read because his eyes tremor), music (can't listen to music because it triggers his tinnitus that he got following meningitis six years ago, which also drives him crazy), walks (too tired), travel (doesn't like crowds), food (doesn't care/isn't hungry), family (too disruptive to our routine, isn't interested in their lives), groups or volunteering (not interested, too inconvenient).... Im depressed too. I can't take SSRIs, because I've tried what's out there and they trigger a lot of paradoxical anxiety for me, but I've found ways to cope by staying active. But I can see that the apathy and anger are taking over his every interaction every moment of the waking day (except the time that he spends with his friend down the street, who he can't be angry in front of), and this looks a lot like depression to me. I was prepared for the physical issues with PD, but I'm really struggling with the sadness and isolation. And in reality, he fights less the PD than this vast assortment of other medical ailments that always seem to crop up in succession. I can't tell you how many specialists we have seen. The tests show him relatively healthy outside of the PD (though the sinus cysts are real) but still the intractable pain and discomfort in his own skin. I have no way to help him. I'm so helpless all of the time. Would treating the depression lessen his pain, and improve the fatalistic outlook? I'm willing to try anything at this point. I should mention that he tried a counselor but nobody seems to 'get' the issues of a man that has had to retire early on disability...they all seem to think it's a pretty cool concept to just 'get' to stay home. Sorry so long. My heart has been full for a long time and I literally have no one else to talk to. |
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Michelle, I don't know if antidepressants is the answer. You state that quality of life has gone down shockingly quickly in comparison to his actual condition? I'm not sure what that means? Is it the cosmetics, what one can see? You know tremor, staggering, trouble walking? Stuff We think everyone notices? Many things you mention could also be Ben's condition but not visible so not thought of right away. Food, doesn't care / isn't hungry, loss of smell makes foods taste bland, where the smell of fresh baked bread normally makes one hungry, if you can't smell it then not so much. Travel doesn't like crowds, I'm in there with Ben on that one! we're out of our safety zone and face it We don't feel that great even in our safety zone. Out of it We feel exposed and uncomfortable. Too much sensory input for us to process overwhelms Us. (panic and anxiety attacks.) Family, too disruptive to our routine. I can identify with that while I love them to death it can be tiring and upsetting to our routine so if it's walk time I make them either walk with me or twiddle their thumbs until I get back if they don't want to go. As this disease goes on our bodies are changed digestion slows causing problems even aches and pains and our opinion on food. Eye tremor I cover one eye at time so I can read but don't try to get up right after that it can be troublesome. Isn't interested in the families life? I'm sure Ben is however I can tell you nothing can replace a sit down have a cup of coffee how are you holding up honestly interested in you and your well being chat. It would take a hell of a lot of phone calls to fill the void of a chat. The disease twists our bodies and muscles causing pain and joint pain it might be subtle to the eye but immense to us. An awful lot goes into our actual condition than meets the eye. Not to preach here but that's why I have a Neurologist and not a movement disorder Doc. because by title they are interested in and treat movement. My Neurologist has the whole body effects in view when treating Me. I don't know if any of this transfers to what Ben is going through or not but it is something to consider when assessing His condition and might explain some whys. Hope it helps you two a bit anyway. |
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I am so sorry reading this, and that your situation has come to this point. We know how you feel, the loneliness and loss, the helplessness no matter what you try, the frustration. It sucks and no one gets it unless they are walking this path too. If it helps, I remember when my husband was first diagnosed, he asked our neuro "OK, so I'm losing my dopamine....so that means that intellectually, I will KNOW I'm supposed to be happy when something good happens, but I won't be able to FEEL that happiness?" I think that sums it up pretty well. Like Al said, if we can't smell, food tastes bland, even if it's the best cookie in the world, or if you're a guy, steak. If we can't emotionally feel joy or happiness, then wouldn't life events become similarly bland, no matter how awesome they were? And to know that you should be happy about something, but not be able to feel that joy, would make things even harder. I don't know anything about antidepressants, so can't help there, but am wondering: does Ben laugh at jokes, or make jokes himself? Can you get him to watch the comedy channel or maybe "best of" someone he thinks is funny? Sometimes a good laugh can really help. I hope you find some relief, and soon. Let us know how things go, hugs 
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Al, he just hurts all the time. Nothing seems to help. Some of it is the PD pain. The other is whatever thing is going wrong at the time. He had meningitis about six years ago, then chronic headaches, and GI issues, and now this sinus cyst that's giving him headaches and driving him nuts. I think it's truly a situation where he's so overwhelmed by the physical pain that he can't cope with any little thing anymore. I understand that...I only keep hoping there is something that can help him cope, since we can't seem to manage the pain very well. My heaven, I wish I could take some of the pain away... What I meant by quality of life vs condition is that he's getting around pretty well, still can drive and take care of lots of things, but his enjoyment of that time is getting a lot worse. He says it's because he's sick and tired all the time. He passes all the tests at the neuro visits for progression, but his subjective quality is bad. Lurking, he actually rarely laughs. He has a pretty flat affect and says it goes all the way back to childhood. That he never really enjoyed anything very much. He doesn't "do" humor. I wonder, reading your insights, if what I'm seeing is the "Parkinsons personality" before we ever recognized it for what it was. It's awful, the anhedonia and apathy, but similar to your analogy, I feel like it's a blind person trying to grasp color. He's sorry it distresses me that he can't feel enjoyment of anything, but it's all he's ever known. It makes me indescribably sad. Thank both of you for your insight. I am hanging in there, and we talk about the tough stuff. I think he still feels like it's all outside stuff that's the problem, which, well....whatever. It's hard to argue that there will just be another stressor tomorrow if I eliminate the ones from today. I know I don't comprehend totally the neurochemical effects of all the drugs, but I just have to say that I wish the dopa drugs would work like the dopamine they're supposed to replace. Maybe make him smile... take away some pain... le him enjoy a joke or a sunset or an experience. He suffers, and I hate it. |