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Old 03-11-2011, 08:30 AM   #1
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Unhappy It's getting tough--Parkinson's spouse

I always said that I would deal with it when I had to and now I have to. It is sooooo difficult to watch my husband be weaker, tired all the time, walk different, and be sooooo slow. I've been through it with my grown child who has mild CP but it didn't get worse. The roles are changing and I am strong and fast and intelligent but I am not happy about living with a grown man who is seeming to be less of a man. I promised him that I would never forget the person who is inside him dispite his outside condition. I don't want to dump the negative feelings with my friends because I think it would overwhelm them and wear them out. Therapy is where I go to dump my feelings but I think it would also help to talk/write to other spouses who have been through it or who are going through it. How do you convert your feelings to being the decider and overseer of most of the decisions? How do you do it without hurting the feelings of the PD person? He is still working and that causes anxiety about how his work career will end. . . it has to be sad, he'll have to fail to know when to leave. PD has not been disclosed at work. So far my coping skills have been along the lines of keeping to my hobbies, exercising and staying social. I continue to work 3-long days per week. If anyone has any additional thoughts or advise I would appreciate reading them. Thank you

 
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Old 03-24-2011, 03:13 PM   #2
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Re: It's getting tough--Parkinson's spouse

Hi L2B,
I am so sorry that you are going through the very challenging job of being a PD spouse. There is an amazing book that deals directly with spouses dealing with Parkinson's Disease called : "Take Charge of Parkinson's Disease". It's written by the wife of an artist who has been battling PD for 30 years. She describes how it nearly cost her her marriage and how she and her husband got back on track and are now living well, despite living with PD.

It has made a huge difference in my family. I wish you well!

< edited >

Last edited by hb-mod; 03-24-2011 at 03:56 PM. Reason: Please don't post unapproved website links, per Posting Policy. Thanks.

 
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Old 03-27-2011, 05:45 PM   #3
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Re: It's getting tough--Parkinson's spouse

I am not a spouse with pd, I have pd. maybe if I can give a point of view from my side maybe it will help you. I know what you are going through I see it in my wife everyday. It is hard on her as well. I don't know how much you talk to each other about his condition or how he feels or how you feel.I know that is touchy subject and very hard to do at times.But it is very important that you express your feelings. I also know how you feel because the hardest part for me is not dealing with pd but seeing what it is doing to my wife and my kids. Even my 7year old granddaughter doesn't understand it. But it still effects her she will ask papa do you still have pd. You talked about him being so tired all the time. with pd it is a different kind of tiredness it can and will total drain your energy. I have it but I can't explain it. If your husband is like me there somethings that he experinces that he just can't explain. why is each day so much different than the day before,how can it affect different parts of my body from one hour to the next. Being in public is another thing that can't really be explained. there is something about pd that makes it hard to go into public places. My wife would tell me you go to work al lday why can't you go to wal mart with me. that is one of the things that hit her the hardest me not going places with her. It wasn't that I didn't want to I enjoyed going places with her. You talked about his work. stating he would have to fail before he quit. it's not that he will fail he has a disease that will make him quit. I still do farm work 14 hours a day. I know someday I will have to give it up. But not because I failed. If your husband is like me he knows that if he quits the disease will take him down. YOU CAN NOT GIVE UP OR QUIT. sure there are things I can't do anymore. But I had to prove to myself that I couldn't do them anymore. You also stated that you saw your husband becoming less of a man. He still is the same man you married how ever many years ago. you are still the same woman he married. love each other with all your heart. sometimes you can laugh together sometimes you have to cry together. The most imporant thing is be there for each other .
because neither one of you can do this on your own. may god bless both of you.

 
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Old 03-27-2011, 05:59 PM   #4
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Re: It's getting tough--Parkinson's spouse

Thank you so much for your time and sentiments and advice, it is much appreciated. He has had PD for 6 years since diagnosis. He never was one to talk a lot, and when talking about the difficulties and himself he is even less talkative. He also has Gaucher's disease which they feel is linked to PD but they don't understand why except that low dopamine levels are found in both. It was helpful to hear about how you have to experience the effort of not being able to do something and that is helpful along with viewing the end of his career differently, that it is the disease and not him that is causing it to end. It just is an unfortunate disease. Thank you for your response.

 
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Old 04-30-2011, 12:58 AM   #5
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Re: It's getting tough--Parkinson's spouse

Omg Lovetobike I have just found your message and it is soooooo me. I have got to the stage where I want to just cry all the time at the unfairness of it all. I work as an Office Manager, a very responsible and taxing job, feel bogged down by work, kids, grandkids, elderly parents and hubby with PD. Someone always wants a piece of me and I have to watch daily my gorgeous hubby who I love beyond words deteriorate before my eyes. When he first got diagnosed 18 months ago I kept telling people at least it wasn't cancer and he was still my Al. Unfortunately I have come to realise this isn't true as anyone knows living with someone with PD they are not the same person we fell in love with and married. I am only 53 and my hubby is only 60 so feel we are to young and have to much life left to live to be where we are. You are so not alone and would love it if you replied

Last edited by Tinapops; 04-30-2011 at 01:06 AM.

 
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Old 05-01-2011, 01:17 PM   #6
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Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by lovetobike View Post
I always said that I would deal with it when I had to and now I have to. It is sooooo difficult to watch my husband be weaker, tired all the time, walk different, and be sooooo slow. I've been through it with my grown child who has mild CP but it didn't get worse. The roles are changing and I am strong and fast and intelligent but I am not happy about living with a grown man who is seeming to be less of a man. I promised him that I would never forget the person who is inside him dispite his outside condition. I don't want to dump the negative feelings with my friends because I think it would overwhelm them and wear them out. Therapy is where I go to dump my feelings but I think it would also help to talk/write to other spouses who have been through it or who are going through it. How do you convert your feelings to being the decider and overseer of most of the decisions? How do you do it without hurting the feelings of the PD person? He is still working and that causes anxiety about how his work career will end. . . it has to be sad, he'll have to fail to know when to leave. PD has not been disclosed at work. So far my coping skills have been along the lines of keeping to my hobbies, exercising and staying social. I continue to work 3-long days per week. If anyone has any additional thoughts or advise I would appreciate reading them. Thank you
Hey there read your post very touching, You need to prepare yourself for what ever comes your way. In a way your lucky this has only raised it's ugly head the last few months, My wife has it the last 8 years, i wish i could say the love you have for your partner helps dealing with the hardship but it doesn't.
Regards Paul26

 
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Old 05-10-2011, 02:31 AM   #7
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Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by lovetobike View Post
I always said that I would deal with it when I had to and now I have to. It is sooooo difficult to watch my husband be weaker, tired all the time, walk different, and be sooooo slow. I've been through it with my grown child who has mild CP but it didn't get worse. The roles are changing and I am strong and fast and intelligent but I am not happy about living with a grown man who is seeming to be less of a man. I promised him that I would never forget the person who is inside him dispite his outside condition. I don't want to dump the negative feelings with my friends because I think it would overwhelm them and wear them out. Therapy is where I go to dump my feelings but I think it would also help to talk/write to other spouses who have been through it or who are going through it. How do you convert your feelings to being the decider and overseer of most of the decisions? How do you do it without hurting the feelings of the PD person? He is still working and that causes anxiety about how his work career will end. . . it has to be sad, he'll have to fail to know when to leave. PD has not been disclosed at work. So far my coping skills have been along the lines of keeping to my hobbies, exercising and staying social. I continue to work 3-long days per week. If anyone has any additional thoughts or advise I would appreciate reading them. Thank you
yep know how you feel, my husband has had pd now for about 8 years and is getting worse, every thing we try new does not seem to work. He is moody and all over the place at times. not sure who i am living with . We are retired, he is 73 I am 69 we will be married 50years in june. so this is tough.

 
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Old 06-05-2011, 10:51 PM   #8
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Re: It's getting tough--Parkinson's spouse

lovetobike,

My husband and I are going through this right now because his father has had Parkinson's for 30 years and is not doing well at this time. He lived with his limitations for years, but now he is facing not being able to care for himself at all. We visited him last week at the nursing home and he has lost control of his hands and becomes quite frustrated. Although the family has adapted to this for so many years, it is still quite difficult to accept it when it becomes completely debilitating and a loved one needs constant 24 hour care. As family, we do the best we can, but also realize this is something we have no control over. I hope you have support groups because they can be very helpful as well. I wish you peace and courage.

 
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Old 06-09-2011, 07:32 AM   #9
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Re: It's getting tough--Parkinson's spouse

Thank you for your reply. Right now my husband is doing very well, he asked his doctor to split his combo pill-I think it is Stalevo-into the 2 generic pills and so his Carbadopa/Levodopa is separate. In addition I advised him to take Vitamin D3 which he has started for several months now. I don't know if this has made a difference or if he is in some kind of remission but he is doing much better. He still will shake when his medicine is low and gets tired easily but doesn't complain much. I know there is more gut wrenching symptoms that will come but for now I am grateful. We do have a support group here but I think I'll have to wait until I retire as they meet on one of my 12-hour work days and I am too tired by then. Thanks again for your support and to all the other replies. I really appreciate it.

 
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Old 07-19-2011, 01:35 PM   #10
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Re: It's getting tough--Parkinson's spouse

New to this forum/website. I feel very similar to you, watching the dynamic man I lived with for 40 years change so much. His problems are less with physical movement, although he is very slow, but with night time disturbances. More later...

 
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Old 08-16-2011, 07:14 PM   #11
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Re: It's getting tough--Parkinson's spouse

My husband has parkinson's he is 78 has it for 8 years now. He had DBS Surgery and it went bad. Probes were covered with Serratia and so was IPG he had to have them removed two weeks after implant, was in a coma for a month, had siezures and now had frontal lobe damage. My advise is do not forget who you married. I have had to take over all the finances and responsiblites of the home, but I include him in decission makeing and make sure he know where the money is spent by keeping my books open to him. He sometimes understands and cares and sometimes no. But I do it anyway. He almost died and when I think that I can still hold his hand , go to dinner, go to the show with him as opposed to without him.

 
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Old 10-08-2011, 07:35 AM   #12
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Re: It's getting tough--Parkinson's spouse

You pretty much have confirmed all my fears. My husband and I have been married for 5 yrs.........he retired 3 yrs ago at 61 and I am watching him go downhill ever since. Two yrs ago, his attention span shortened, became paranoid, critical thinking skills went. I was not thinking PD at the time but more along the line of Dementia. However, two yrs later his fingers and hands are starting to jerk, he has lost his muscle mass in his legs overnight, attention is worse, has a blank "deer in the woods look" when he gets confused. He goes thru stop signs, stops at yield signs, leaves basement door open when grandkids are over, etc etc etc. I have had a talk with him and he says he just needs to get his head on straight. He was a pipefitter and PD is an issue for them. He has a Dr's appt on Nov 9th and I am determined to go with him even though he does not want me to. I just am not sure how I will get through this.

 
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Old 10-09-2011, 04:04 PM   #13
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Re: It's getting tough--Parkinson's spouse

Your husband sounds very much like mine. I thought that his confusion etc was a reaction to the death of his brother and would stabilise but the fingers and hands began to shake and I could hear his feet dragging when he walked. You must go to the doctor with him as a true picture has to be given and no doubt your husband will say he's fine. he will also forget details re medication. My husband has been on the lightest form of medication for over two years now and has remained very stable physically. His attention span is poor, the paranoia remains and I have to be careful that nothing stresses him as a minor can become a major happening!! An outgoing cheerful guy is now reclusive, argumentative and introvert. You will adjust and get through. I'm not saying that I don't get resentful and seethe inside when I have to tread lightly but I have a couple of good/bad/ugly life knowledge friends who i can have a quick vent to. I figure there's a lot worse off than us in the long run.

 
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Old 04-14-2012, 10:09 AM   #14
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Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by lovetobike View Post
I always said that I would deal with it when I had to and now I have to. It is sooooo difficult to watch my husband be weaker, tired all the time, walk different, and be sooooo slow. I've been through it with my grown child who has mild CP but it didn't get worse. The roles are changing and I am strong and fast and intelligent but I am not happy about living with a grown man who is seeming to be less of a man. I promised him that I would never forget the person who is inside him dispite his outside condition. I don't want to dump the negative feelings with my friends because I think it would overwhelm them and wear them out. Therapy is where I go to dump my feelings but I think it would also help to talk/write to other spouses who have been through it or who are going through it. How do you convert your feelings to being the decider and overseer of most of the decisions? How do you do it without hurting the feelings of the PD person? He is still working and that causes anxiety about how his work career will end. . . it has to be sad, he'll have to fail to know when to leave. PD has not been disclosed at work. So far my coping skills have been along the lines of keeping to my hobbies, exercising and staying social. I continue to work 3-long days per week. If anyone has any additional thoughts or advise I would appreciate reading them. Thank you
I recently (2 weeks) met an intelligent (RN) mature (near my age) woman who may have PD.
I noticed her hand tremble at lunch and at a store. We are still at the “introductory” stage of a relationship. We telephone talk often. She called me last night to inform me that she has not been diagnosed with PD but suspects she may be blessed with the disease. She wanted me informed before we go on. I told her honestly that I suspected she had PD as my mother was afflicted but only had a small tremor for years. I told her I was not concerned and we would learn to cope.
Your note gave me some concern. Please expand on your experiences after this passage of time to better give me a perspective of what I should expect.
Thank you
PJ

 
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Old 05-11-2012, 08:01 AM   #15
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Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by pjblake100 View Post
I recently (2 weeks) met an intelligent (RN) mature (near my age) woman who may have PD.
I noticed her hand tremble at lunch and at a store. We are still at the “introductory” stage of a relationship. We telephone talk often. She called me last night to inform me that she has not been diagnosed with PD but suspects she may be blessed with the disease. She wanted me informed before we go on. I told her honestly that I suspected she had PD as my mother was afflicted but only had a small tremor for years. I told her I was not concerned and we would learn to cope.
Your note gave me some concern. Please expand on your experiences after this passage of time to better give me a perspective of what I should expect.
Thank you
PJ

 
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