Unless you have Parkinson's, you can not possibly understand the impossibility and frustration that comes with not being able to do the simple things. Things like "getting your own water", getting dressed without assistance. It's not about being depressed, it's about not being able to move (I am refraining from using foul language). To conclude that a PD patient is requires assistance doing the most simple tasks because they are not motivated or depressed demonstrates a good deal of ignorance. Having PD now for 12 long years, when I ask my spouse to get something for me, it's because I can not do it for myself. Having been extremely independent all my life, asking others to do for me what I can no longer do for myself is frustrating, painful, and humiliating. It is sad to hear that those giving advice in this forum are so ignorant and lack understanding and empathy.
Understanding Parkinson's: Unless you have... - Cure Parkinson's
Understanding Parkinson's
who are you referring to
A couple of posts to this site.
which ones i would like to read what you read
My husband has no motivation. He wants everything done for him. I have to constantly tell him that the longer he at least tries to do some things for him self, the better he will be. He wants me to bring his water to him, altho it is where he can easily get it himself. Wants me to completely dress/undress him altho with a little stretching he can do it himself. If I ask if he's done his stretches of his hand weights or bands, he can't because he is hurting. He won't go out of the house because he's afraid he will fall. I can go on and on. I get so frustrated, that he doesn't even want to try anything. He ALWAYS says 'I can't'. But if I push him he can. I have told him so many times, at least try something, and if I see that he can't, I will help. But he just won't try. It's like he's waiting to die. I thought we all had a survival instinct, but seems like he doesn't. Do I just give up and do everything for him? I'm at a loss and so is the rest of the family. I have taken suggestions from them and tried everything I can think of to motivate him, but nothing works. Just don't know what to do anymore. He says I just don't understand and maybe I don't. But I know what I see, that he can do things but doesn't want to. Any help of suggestions would be appreciated.
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debbie66
5 years agodebbie66
Hi Gloria-John,
i have read your profile as well as what you have said above and it sounds like your husband is depressed.My husband was diagnosed 14 years ago and has suffered from depression on and off since.
Maybe a visit to your consultant or doctor,see if he needs his meds changed or that he may need an anti-depressant .My husband had his meds changed a few times before the right combination was found that worked for him.He has taken anti-depressants over the years and I can say that they do work.See what help is available to you and your husband .Counselling is also another option as your husband may not have accepted he has Parkinsons,it took my husband almost 10 years to admit to himself that he had it.
I hope this has been of some help.Have you looked at the Michael J.Fox foundation website as there is advise on there that maybe of help.
tmhiggs
5 years agotmhiggs
hello, pd is a very complex disease.... not a whole lot of people are aware of how disabling it can be. i am 43 and was diag at 40 and am progressing fast... stiffness, slow moving, very unsteady gait ( i fall all the time) use a cane/and or walker most of time, can no longer work or drive. i'm sure you are frustrated but i bet your husband is 20X more frustrated. when i get like that , which is a daily struggle for me, bec my meds ware off every 2 hrs., plus they always don't work.... alot of factors play into this for starters stress plays a big part by making all your pd symptoms worse, plus your diet... protein especially. i do exercise when i can, or do other things around the house when i can, etc. everything i do i have to pace myself and i pretty much try and plan everything around my pd, but not always so easy. my husband has to help soemtimes with gettiing dressed, or cut my meat on my dinner plate, or get my water just so i can take my meds just to be able to move! yea it sucks! even sometimes i get into the shower and 1/2 way thru i can't move.... sometimes the more you try to do your meds wear off that much quicker. i was and still am off/on depressed... i cry some, i was in denial for about 2 yrs. just please try and be patient with him and when he says he can't, well he prob can't. i don't want to get up n walk sometimes in fear of falling during an "off" period when i am like that I can't even stand up straight. your husband needs you for support, and love... just be there for him... he didn;t ask for this. that's another thing you do get very exhausted bec what my doc had told me was you are working extra hard to try and be able to move your muscles. my muscles feel like dead weight sometimes. i am married to a wonderful man who is there for me 100% of the time (except for when he is working). we still do things are are still able to enjoy each other during my "on" and "off" periods.... you just gotta make the best of it. i really don't know what i would do without my husband. i hope this helps. you should check out the michael j foxx web site.
alllowercase
5 years agoalllowercase
If you have the strength of mind to do it, then try some tough love. Go shopping with a friend. Leave around 10 in the morning and get home around 2.30 or 3. Let him know his lunch is in the fridge / microwave. And see how much he does when he is forced to fend for himself.
By the way, I am not some heartless spouse - I am the one with PD and various other bits that are playing up.
Good luck, even if you don't try it.
Adrian
olpilot
5 years agoolpilot
For a long while even before was diagnosed I felt like doing nothing. I had sugery for cervical spinal stenosis, that put me on disability, but the drs thought that was the source of all my problems. It was not and I was depressed because I knew something more was there. Point is, my depression was more dibilitating than anything else. My wife woeks full time and I had to take care of myself, didn't do a gteat job, let a lot of things go, but I had too, and did take care of myself. After my diagnosis and getting the meds I need, my whole life is turning around. I started a woodworking hobby I enjoy, and have been pretty active and feel better than in years. Being active and doing for myself has given a big part of me back. I don’t know whats coming,not for sure, but for NOW which is most important I am doing better for myself. For now what seems to be a goodi balance of meds and activity, I almost forget for a littlle while that I have PD. Treating depression is at least as important as treating PD. Good luck
Carrigan
5 years agoCarrigan
Hello yes it is very hard but sounds like depression to me or something has been missed inthe diagnosis maybe , you need some good sound advise, pester everyone you can and get help. You must not feel guilty you are doing what you think is right for him and you are wearing down too not good get some help please xx Good luck
love89
5 years agolove89
Hi Gloria
my name is Laurina I can very much relate to you my dad has had PD for about 6 years now I stay home and take care of him. I as well get so frustrated so I know the emotional stress and weight you and your family are going through, Never give up no matter what....My dad has been the same way this year especially, his PD has rapidly progressed and he himself has given up more than once. Your husband is depressed....don't let him give up push him,encourage him, and even though you might get so mad (as I do) fight for him and give him some tuff love. Yes help him but don't allow him to handicap himself from what he is able to do. be his strength help him laugh and let him share what he feels with you. My prayers are with you don't ever give up we have to fight for our loved ones.
Precious44
5 years agoPrecious44
Hi Gloria, my name is Kathy I am 68 and I have Parkinson's. You have gotten some wonderful answers and ideas. This is a great site, I just found it last week and already, it's the first place I go in the morning and usually the last place I am before bed. I agree with most of the answer and suggestion you have been give. He sounds depressed, get him into see his neurologist and get him on a anti-depressant. There use to be shame or guilt around needing anti depressants but I think they are most wonderful things I have been on them for 20 years. I felt depressed most of my life, but when I got the diagnosis that I had Parkinson's I went way down for 2 years I did nothing, didn't go out except to get my groceries or meds.I wasted 2 years of my life and all's I need to do was go to the doctor and get my anti-depressants changed. Do take of yourself, do you run or exercise? Great for stress relief. There is a letter that was posted on here that is wonderful. I'll see if I can find it for you, it will help you understand a little better.
Hugs,Hugs,Hugs
Precious 44 (Kathy)
Precious44
5 years agoPrecious44
LETTER FOR MY FAMILY/FRIENDS (author unknown)
I have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as they grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.
Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. You probably have not. It is the Parkinson's, keep talking to me. Ignore the tears; I'll be ok in a few minutes.
Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends?
My face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's I hear you. I have the same intelligence; it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.
Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's Let me take my time, keep talking.
Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending, exercises must be done every day. Help me with them if you can.
My voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.
Sleeplessness: I may complain that I can't sleep. If I wander around in the middle of the night, that's Parkinson's it has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping. Be patient, my friends. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends. I want to continue to be part of life. Invite me even though I may not be able to go, it’s lonely on your own. Please remain my friend.
Thank you to those who have remained my friend and still invite me out and to those who took advantage by pretending to be my friend, you are forgiven. However to those who no longer want my friendship that’s too bad, because you’ve lost a good friend. I still wish you the very best now and always.
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sounds awful. Sorry.
My heart goes out to you it is a very dibilitating disease
My husband was diagnosed 2 years ago but has probably had it for at least 10 He has trouble doing simple things and yes it's frustrating and embarrassing
Stay positive
What helps me ask people for help is that many get more benefit from helping than the one's they help. At least that is what I believe when I ask for help.
I believe that is true.
You are correct! In the beginning stages, I could do for myself. Now, it’s a different story. There are times, especially when I have dyskinesia, or sharp pain from a stiff, twisted muscle, or a freezing episode, or I mix my words up, when I need a helping hand, or understanding. It is not because I’m lazy, or depressed or not motivated, it is because of neuronal degeneration. Sometimes I get help, other times, not so much. Some people figure that I could do a task a few days ago, why can’t I do it today? I’m happy for those whose PD has not advanced to stage 3 and beyond. I wish I was back at Stage 1, where I was still fairly independent. I want to stay independent. I absolutely hate being dependent on others, and I’ll only ask for help, if I really need it. Like the other day, it was an “off” time for me, and we were out shopping with the family. Walking back to the car, hanging on to a cart, I stiffened up, could hardly walk, was dragging my left leg. When it came time to get in the back seat, I tried lifting my foot into the car, but it wouldn’t go. I tried the other leg, and had the same problem. I tried about 5 times, while everybody was busy talking about their own stuff. Finally, I took my hands and lifted my right leg into the car, losing my balance, and fell into the car. Then I had to pull my right leg in to close the door. So, yes, I understand only too well, what you mean, when you say that only if one has Parkinson’s, can they possibly understand the impossibility and frustration that comes with not being able to do the simplest things. Sometimes, I’ve spent 20 minutes just trying to get a coat zipper zipped. A person who is gifted with true understanding, patience, and empathy to the difficulties some of of us face on a daily basis, is a rare find, so if you find one, hang on to them. Best wishes to you!
Thank you for your reply. I can relate to all that you said, including not being able to lift your feet, no matter how much effort you put in to it.
and to you also; if only I could have known before I had PD, I would have gladly looked for someone in need that I could have made a small contribution to help them somehow. My bad. No matter how many books you read, you aren't prepared for the next downturn. While I should feel some solace knowing I am not alone in this battle, I regret that there are others suffering. I am fortunate to have a wonderful, supportive, attentive husband.
Godspeed deliverance.
Well that’s a positive first post! Welcome to the community😊
As a retired PT with PD symptoms for over 20 years I can attest to the fact that no two of us are alike... no one can adequately judge your unique dilemma.
Frustrating, painful, and humiliating your words but also the PD community who probably all feel the way you do. People from all walks of life who's lives are dramatically effected by this horrible disease not to mention their loved ones. One feeling I think you should include is "PROUD." Being "extremely independent" you should be proud of your efforts to cope with PD, which include frustration, pain, and humiliation. People can be cruel but often not as treacherous as we are to ourselves. Fortunately, unlike many, you have a loving spouse and I dare say family and friends that are there for you. It's not humiliating for them as it wouldn't be for you if you were in their shoes. Smile and give yourself a big hug and remember you are not alone.
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