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Topic feeling very MAD!HURT! ISOLATED!DID I SAY I WAS MAD? Go to previous topic Go to next topic Go to higher level

By whyhim69 On 2012.07.19 00:30 [Edit]
Ok,,,I am a spouse 1st,CG 2nd, and I am very Mad about how this disease has effected our life! We have had this disease since 2008. My husband has recently quit excercising, walking, riding his bike, etc. He was very adamant about his PT excersises, walking etc until about 5 months ago.I can really tell the difference in his PD and have pointed it out to him and his Dr. He has went down hill a little. I can not get him motivated to do any of these, he says he gets enough excercise doing things through out the day, however it is not the right type of excercise. He now says I am treating him like he is stupid,( I have decided NOT to help him ) he is a very bright man and there is NO way I would ever think he is stupid! Sometimes I wonder why he is or is not doing something correctly, but that is because he has never had problems doing those things. He does now.
He tells his Dr he is NOT depressed, however I wonder if this is his problem? He never really had a hobby except work, (heavy mahinery) I can not get him motivated to do anything, no hobbies, no computer, nothing, which makes for a long day for us both! I love him with all my heart but I am at my witts end on what I need to do. This PD really is getting me down! Please help???

By jaxrock On 2012.07.19 10:11
Just my experience..........but, whenever I see a marked decline or difference in my husband, my first thought is.............the medications.........are they still working? should any be taken away? or added?

I saw my husband decline in many ways, then the Dr. put him on the Exelon patch....what a difference!

And, yes, depression certainly is part of the PD experience...but, again, I would question the doctors about the meds he's taking...perhaps even the timing of meds can made a difference.

Good Luck...

By cmonge On 2012.07.19 12:25
I know what you are going through. My husband is totally unmotivated to do anything either. My husband is also bipolar so Parkinson's has us on a constant mood rollercoaster. I am quite frankly, ready to throw in the towel because my partner wants to do nothing to help himself. We go to therapy and he ignores all suggestions. I feel very isolated and alone. If it wasn't for my daughter and my friends I don't know what I would do. All I can say is that this is what this disease does to our mates. It's not their fault, but it doesn't make it any easier on us. You need to just start making time for yourself to separate yourself from the situation when you get frustrated.

By LOHENGR1N On 2012.07.19 14:38
whyhim, You state your husband has recently stopped exercising (5 months ago) and you notice he is going downhill. You bring up depression, while it does come with PD many times your husband is adamant he isn't depressed. If I may perhaps inserting discouraged in place of depressed. There are all sorts of claims of exercise prolonging or delaying the progression of PD. These claims are unfounded and it is unconscionable to make them! We all know each case presents it's own set of symptoms and rate of progression for other cases. To make statements of slowing progression only serve to discourage those believing it as the disease progresses! Leaving broken spirits along with their malfunctioning bodies! Please don't get me wrong exercising is needed and will help you fight the disease in that muscles and organs are stronger for a longer period of time but eventually the disease will win. However that doesn't mean to give up it only means over time we have to adapt our expectations of benefits to be gained by medications and exercise. As time progresses we all get worse. With the progression we will tend to have trouble doing things we once did with ease before. For lack of a better term we become clumsy, our fine dexterity suffers first, the interrupted signals or misfiring signals cause awkward movements and these can discourage us from doing things as it is a reminder of our progression. So maybe try to go over some of the exercises and what you're both expecting them to do for him. Forget about claims of stopping progression or slowing progression. Just what He would benefit from them. What may help him with movement or balance or whatever as he fights this disease. Change the goal! Make it NOT what will delay progression (that is a fairy tail), instead make it what will help make it easier to move and do things to keep quality in His life and yours. Make it personal and don't knock your self out trying to do every exercise so called experts come up with. It's about life and life's quality left His and Yours. I hope this helps, take care, best of luck and hang in there.

By cgold On 2012.07.19 21:20
Another thing to consider is PD apathy which is different from depression. Not so easily treated as meds for depression. If your spouse is showing signs of indifference, lack of motivation, then it may be apathy. Google PD apathy as there is good information on the topic.

By jaxrock On 2012.07.19 22:22
Oh, I agree with the apathy discussion..................I've seen that so often with my's very annoying......but I finally have realized he can't help it...but it still makes me upset sometimes...

Good suggestions about researching apathy and PD....

Wish I had thought of that to mention when I first posted re: your issue

By kaykaykan On 2012.07.20 02:20
I am so excited to see that apathy is a symptom. I too have tried to force my husband to be more social when the kids and grandkids visit, to exercise again. We have had the depression discussion almost monthy for over two years now. He declares he isn't depressed and I tell him he is! Sitting in the chair in his room or in his bed 23 hours a day is depression. I will study up on apathy in PD. I still work and have cut my hours back, taken over the meds and am getting uncomfortable leaving him for over 4 hours and must continue to work. I understand how you would be angry and feel cheated. It is hard for me to see couples our age shopping together, eating out together, going for walks down my street. The sense of loss is overpowering at times but the hardest part is watching him walk to the kitchen, pushing his walker, and knowing it is a chore for this simple task and my mind goes back to the strong tall man that wore a badge to protect others and now I am his line of defense and I feel helpless. Our kids listen and offer encouraging words, but are still in denial as to how bad it is. No matter how many friends or family listen, the caregiver remains alone in so many ways.

By phoenix On 2012.07.20 22:05
Kaykaykan, I was married to one of those tall strong guys who wore a badge also. Now he makes no sense much of the time and so I find myself in charge and coming between him and the rest of the world. There don't seem to be any instructions on how to deal with the day by day, minute by minute situations that arise. Glad I have this place to come to. Nobody else could understand.

By lurkingforacure On 2012.07.21 08:35
I don't have any interest in this company but we did sign up for a year's worth of brain exercises: lumosity I think it is. You start off and they keep your results and you try to beat your best score. There are a variety of exercises and they automatically get harder as you do well. BTW, none of them are like sudoku, more like trying to remember where tiles are blacked out and then marking them, or matching patterns that were flashed on the screen for a few seconds, things like that.

I find them quite challenging myself, which is a bit scary! Maybe these exercises might help your loved one.

By jaxrock On 2012.07.22 10:56
Oh husband also wore a badge and protected others in a major city.....
To see this once strong, "in charge" man now need help to decide which type of absorbent underwear to wear is absolutely heartbreaking....
He tries his best to be himself - but, it's only an illusion....
I give him credit for trying, must be awful for him!

By whyhim69 On 2012.07.24 21:08
Thanks to everyone who has replied. I do appreciate the feed back. Unfortunantly whether coinsedence or actual help, he did do better when he exercizes. I do believe in that it helps with dopamine repro. I still do not know how to approach his "apathy". His lack of motivation. Tried numerous things and It makes me feel even worse when he doesnt want to try. At least try! I am about ready to have cable shut off just to see if that helped.
I will keep researching and reading posts and inter-acting with other PDCG in hopes that something comes up????? It breaks my heart to see a man who was very capable of trying new things prefers to not try. Maybe its my issue and NOT his?????

By kaykaykan On 2012.07.30 21:40
Whyhim, the apathy is the worst part. I judge his quality of life by his old standards and they no longer exist. I tried the turn off the cable thing, and it didn't work here. The TV is his life. He never comes out of his room except to try and tell me something about a senseless show he would never have watched a few years ago and I have had to learn to show interest, ask questions and respond because that is the only way I can interact with him now. He has a very limited tollerance for my daily activities, those of the kids or grandkids. It is making sure he has the food he wants, the cable bill is paid, and when I will leave for work and when I will be home. He now is choosing the only life I believe he can deal with on a daily basis. Family and life issues bring out emotions and concerns he isn't able to dael with anymore. I feel your pain.

By Jane On 2012.07.31 11:22
After one year of accepting my husband's talking about his plans to do things such as swimming or riding his bike but not actually doing them, I have begun to push him to exercise. He is responding to my pushing with concern about my not being happy with our relationship. He is right; I am not happy. My husband says that he is content with his life, which involves my taking care of him. I get so angry because I do not want to be his caretaker and think if he only would exercise he could do more for himself. He has parkinson's and says he is content. I do not have parkinson's and am constantly feeling angry, sad or guilty. I am constantly feeling that I need help with taking care of him. Yet when I begin to look into the possiblity of hiring a caretaker or moving him to an assisted living program, he gives me an indication that he does not need it. For example after two weeks of total dependence on me when I came home from work last friday he was out washing his truck. This is crazy making for me!

By LOHENGR1N On 2012.07.31 19:46
Wow, Jane that is some statement! Exercising is important BUT it will not stop, reverse or even slow down the progression of Parkinson's Disease! Statements to the contrary are false. Progression is different to each individual so a clam of slowing it is factually empty. Prodding and pushing won't make it happen. Find Him a buddy or make time to do it with Him. Many times spouses wanting to help patients will rush in and attempt to do everything feeling they are being helpful. This backfires on many because it enforces the patients conception that they can't do things anymore or they rely on the spouse to do all because it's easier for them. WE have to do things as long as we can and if it takes Us longer now well as hard as it is to see Us struggle or take longer caregivers have to try to wait it out and not just take over because We'll let you! In the rush to help many well meaning caregivers/partners just think about the right now not that for years to come they might be relied upon to do more and more. If one does everything or almost everything from the diagnosis unwittingly they sentence themselves to years of doing everything with no relief in sight. Jane no-one wants to be a caregiver it sucks. Life is short at best. Try stepping back a bit take a deep breath and next time you come home and He's washing his truck try tossing your keys to Him with a hey my car needs a washing too! Go in change into some comfortable clothes come back out and say You wash I'll vacuum! Then sneak a peek and smile as He works those arms and fingers washing and bends and stretches wringing the cloth out and rinses it with the hose! You'll have a clean car, tired Husband just exercised and a better idea of what you can trick him into tomorrow or the next day! Take care, best wishes and hang in there.

By Trusting On 2012.07.31 23:06
Just last week my husband with PD, was in the garden picking tomatoes. I noticed that he was struggling to carry the bucket back to the house, but I didn't want to rush in to help if he didn't really need it. Within a few minutes he was flat on his back and couldn't get up. He said his legs just quit. He scared the wits out of me!
One week later, he is getting around just fine. It's been like a roller coaster of emotions. One day I'm afraid his life is over, the next he seems fine.

I'm sure many of you are feeling this way. I just feel like I'm on a road that I've never traveled before and I'm trying to take it one day at a time.

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