I'm the wife of a wonderful man who has just been diagnosed with atypical Parkinson's. I am frightened at this time. I read online about what could happen and I get sick. I hate the thought of what will be coming. do you adjust to the diagnosis you've been given in time? its all so scary.
I am new to support forums but felt it time to express my feelings. I am 38 and have been married for 16 years to the love of my life. He is 13 years my senior. He was diagnosed with PD at age 42 and now at age 51 he is so far from the man I married. I feel like I am watching him suffer and fade away in front of my eyes and I will be left alone in the prime of my life. I don't want to sound selfish but we had such wonderful plans for our life. I am a Trauma ER RN as well, raising 3 teenagers while taking care of my husband. He doesn't seem to understand the burden, nor does he like to discuss it because it upsets him. HE always retorts with "this is not what I chose either". I would never leave him but i feel trapped, lost, alone and sad to watch him disappear in front of me. It's not like other diseases where the suffering and pain end, with PD it continues for what seems like and endless amount of time. How do you keep the love for someone that has changed so drastically and so far from who I married? Communication is a HUGE problem as well... it is a difficult journey, heart breaking. Thank you for your support through this struggle
Aubtodd, I could have written your entry as I can relate totally. My husband was diagnosed at age 47 and is now 56. He has not worked in 3 years and I have a very busy and stressful administrative position in education. It is do difficult to describe this disease. Sometimes I don't know what is Parkinson's and what isn't. I feel like I have a 4 year old for a partner as I take care of everything - our home, our cabin, our finances, groceries, cooking, cleaning, shopping, appointments, etc. while he sits in a chair, watches movies or sleeps. I work 60 hours a week and he's in bed when I leave and often when I come home. I have no partner - no companionship - in interest, joy or excitement and many times I can't imagine beyond today. As much as I would like to retire, I can't imagine being home all day with this situation. I feel angry, guilty, sad, despondent and like someone else said, no end in sight. Sorry to vent. It is very challenging and is affecting my well being also.
I was 57 when my husband had a stroke that induced Parkinson's. He had to retire due to disability and I had to quit my job because he had a seizure. I encourage you to do what you can to "keep working". I wish I had. He can not due anything without my help and walks no more than 1 or 2 hrs a day between computer rooms. He primarily sits and watches tv all day. The dr. says it is just a matter of keeping him comfortable now but the pain in his legs never goes away, even with meds. Even though he has been deteriorating for 6 yrs., I find myself finally depressed over the fact that my husband is gone...it has affected his cognition as well as his gait. He refuses to attend adult daycare. He is not empathetic at all and is all consumed with buying techno items and can't use them when he gets them which frustrates him. If your husband can still work and still works with you, then consider yourself blessed. Keep your identity and hobbies or you will lose your mind.
The following user gives a hug of support to AginCajun: Andyck (11-27-2012)
My husband was diagnosed with PD two years ago but with the knowledge I have now and hindsight, he has had this disease for at least 4 years. As I read the posts of spouse's and companions of loved ones suffering from this disease, I realize I'm not alone and find some comfort. The world we live in is one that only we can know and understand. It is filled with love, stress, confusion, hope, and an unfilled need of understanding. Everyday I try to find a way to make my husband's day a day worth living and better for him because I love him and the man he was, but everyday the stress of what Parkinson's is doing to him takes it's toll on me and our relationship. Parkinson's is an evil disease and it attacks the physical and mental abilities of a person, but it doesn't attack the soul or the heart of the person. The person you love is still in there, fighting for their life, just as hard as you are fighting for them, they just can't express it as easily.
Take some time away to relieve some stress, even if it's just a few hours.
Hugs. It's tough I know,. I have PD and so does my husband. But I'm not doing as well as he is becuase my system doesn't like the preferred drugs. Good luck to you. Hopefully you will find others in your same situation that can provide support.
Hi, I read your post and decided to register so I might be of a little help.
My background includes caring for my spouse of 45 years through her decline due to diabetes. she lost her eyesight and later her kidney function, was on dialysis for 2 years before her death. I remarried and find myself on the other side of the coin, having been diagnosed with PD a year ago. I understand your feelings and want to let you know that it's OK. What you are experiencing is what I call "Caregiver Grief". As with any grieving process You will have differing responses to the changes in your life. A good resource is The national family caregivers association. They were a lot of help to me in my former life and I think that membership is still free.
Actually, my husband somewhat takes care of me. He is doing better with his Parkinson's than I am. My system doesn't want to tolerate the preferred medications. So happy life is turning around some for you.
I am very grateful to have found this board. Thank you for all your responses. My husband has been diagnosed with PD after a long period of sleep disturbance without an accurate diagnosis or relief from various medications. Finally other effects started showing and he was diagnosed with "Parkinsonism." So far, the effects are slow, shuffling gait, slow everything, and now he's beginning to notice mood swings and shakiness when tired. MY symptoms are periods of depression, anger, a lack of optimism, crankiness and impatience. After reading some of these posts last night, I told him "You have symptoms of PD, I have symptoms of PD spouse syndrome. I am sympathetic to what you are going through, but we have to be able to talk about what I am going through, too." He recognized what I was saying and agreed that we do need to communicate more openly. Quite unexpectedly, I felt much better after this. You all gave me the courage to acknowledge my feelings and reactions. After all, all our ideas about the future have been altered.
I appreciate that we can acknowledge that spouses/lovers also have issues involved in a Parkinson's diagnosis. You will not find this reflected in Michael Fox's website. Let's get real and it may help everyone involved. Thanks.
I have PD and so does my husband. He's doing quite well on the preferred meds. I am not. I had to stop taking Sinmet because of all the horrible things it was doing to me, including causing me to have dementia like symptoms. Have any of you found that you become more easily confused, speech is worse, thinking less clear, etc? Someone once told me that her mother developed Alzheimers after taking her PD meds. Since I feel the same thing happening to my mind, I haven't started back up on Sinemet yet. Just wondering what others are experiencing. Sorry for mistakes. Getting shaky right now.
meandpd may I ask you to start the above re medication as a new thread under a medications name please. My husband has these symptoms but I think that people who could help may miss this as it is under the getting tough site.
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
HI -
I have PD and have been diagnosed for 15 yrs. I have recently had DBS surgery and am still in the recovery stage. I am a court reporter (stenographer) so my dexterity in my hands is my world. As I am beginning to slow down and looking for a disability retirement after 28 years, I can honestly say that without my care-giver, my beautiful wife, I would not and could not have managed to get this far. So in a view from the other side, the PD patient saying thank you and please don't ever leave me to deal with this on my own. I know it is tough at times. There are times when I think to myself to let her go for her to have a better life -- but know that such understanding and such compassion that she possesses only come around once in a lifetime. The stress at my job is unbearable and definitely has an effect on me and her. I see it in her face, her moods but she still stands tall and helps me through. I guess what I'm trying to say is please don't give up. Take the good things and concentrate on them. The bad things, does it really matter??? Hope this helps.
I have PD and have been diagnosed for 15 yrs. I have recently had DBS surgery and am still in the recovery stage. I am a court reporter (stenographer) so my dexterity in my hands is my world. As I am beginning to slow down and looking for a disability retirement after 28 years, I can honestly say that without my care-giver, my beautiful wife, I would not and could not have managed to get this far. So in a view from the other side, the PD patient saying thank you and please don't ever leave me to deal with this on my own. I know it is tough at times. There are times when I think to myself to let her go for her to have a better life -- but know that such understanding and such compassion that she possesses only come around once in a lifetime. The stress at my job is unbearable and definitely has an effect on me and her. I see it in her face, her moods but she still stands tall and helps me through. I guess what I'm trying to say is please don't give up. Take the good things and concentrate on them. The bad things, does it really matter??? Hope this helps.
my husband was diagnosed 7 months ago with tremors which led to being told he had PD and that he has probably has had it for many years. he seems to be progressing fast, we have tried 8 medications that do not seem to make difference, we are tryin to get an appt in UCLA for a movement specialist and hopefully they can adjust med or something, my question to you is when did you first start applying for disability? my husband has been working for 4 days a week for 5 hours a day and he is struggling. I have heard it takes along time to get approved for disability but were you still working when you applied? I feel really lost right now not knowing what to do. the stress of work is getting really bad but he is affaid of not having any income.
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
Are you still dealing with the work issue? Your words meant so much to me. I want to vent but feel guilty? Sometimes I wonder who I live with. I miss my husband. Communication is a big problem now, never before for us, so many arguments and so many apologies.
