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Old 05-11-2012, 08:08 AM   #16
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melfay HB User
Re: It's getting tough--Parkinson's spouse

What a lovely honest lady. If you read all the comments re It's getting tough ... they give a true indication of the situation. My husband is only 58 yrs old, & has had Parkinsons since he was 44. As a carer it can be lonely, frustrating, exhausting,... difficult not being able to discuss things rationally like we used to, .. v difficult to avoid stressful topics like problems with family or money. If you take on this dear lady, please be well aware of the possibilities. My husband has always had a wonderful sense of humour, loved company, was well groomed, energetic, funloving ....... all gone now, due to the cruel illness. It is lonely being a carer, & wanting to be nurtured too. All the best with whatever you decide.

 
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Old 05-12-2012, 09:33 AM   #17
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pjblake100 HB User
Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by melfay View Post
What a lovely honest lady. If you read all the comments re It's getting tough ... they give a true indication of the situation. My husband is only 58 yrs old, & has had Parkinsons since he was 44. As a carer it can be lonely, frustrating, exhausting,... difficult not being able to discuss things rationally like we used to, .. v difficult to avoid stressful topics like problems with family or money. If you take on this dear lady, please be well aware of the possibilities. My husband has always had a wonderful sense of humour, loved company, was well groomed, energetic, funloving ....... all gone now, due to the cruel illness. It is lonely being a carer, & wanting to be nurtured too. All the best with whatever you decide.
Thank you,
She may know of this burden. She advertises that she will not marry again and thought I was more religious - a significant change since our initial meetings.
Thank you again.

 
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Old 05-24-2012, 02:56 PM   #18
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vgs1895 HB User
Re: It's getting tough--Parkinson's spouse

I have been feeling so alone, and I googled "Parkinson's Spouse" and your post came up. I'm sitting crying as I watch my previously strong husband getting weaker and weaker. I need a support group/forum or something. This is the hardest thing I've ever gone through in my life and I don't think people could possibly understand it unless they've gone through it.

My mom got cancer when I was 11 and died a few years later. That was horrible, but I only knew her 'healthy' for 11 years, so as awful as that was--this is worse.

I don't mean to be such a downer, but I am glad to know there are people out there who know what this is like.

By the way--my husband's PD and heart disease came from exposure to Agent Orange in Viet Nam. We've known something was wrong for the past 6+ years, but he was only diagnosed recently--so this is rather new to me. Thank you.

 
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Old 06-09-2012, 07:40 PM   #19
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Namaste49 HB User
Re: It's getting tough--Parkinson's spouse

I am 63 and was diagnosed w/ PD 3 1/2 years ago. I am an RN. I worked for almost 2 years. It took awhile to decide to tell people at work. I don't have upper tremors. I have slowness & stiffness of gait. My depression and anxiety are my most debilitating PD symptoms or my "P.D. cluster" as described by my Movement Disorder specialist. I too have fatigue as it is part of P.D. It takes me much longer to do normal activities of daily living.
What I have experienced is that nothing exacerbates PD sx like stress. The stress of working FT at a job where "no one knows" would add to the stress and progress his disease.
When I tried to switch to a less stressful job I experienced a cognitive decline as I was going from something familiar to a whole new system. I recognized my inability to continue working FT before someone else did.That would have been devastating for me.
I then had neuro psychological testing. The results of the test coupled with P.D. itself resulted in being awarded disability in a month.It took 5 months to get my first check.
I still grieve the loss of my former professional life. It's also a struggle to have my income reduced by 70% but we're adjusting.
I have better quality of life since not having the pressure of "acting as if " at work. I now have the time and energy to take care of me to prevent my P.D. from progressing faster than it would have had I kept working.
Excercise is essential for body and mind. I am able to maintain my independence because I have the time to take care of me.
My partner of 6 years gets frustrated wiith my slowness, fluctuation of energy, etc. but I couldn't ask for better support.
It's important that the two of you talk about your feelings together as well as each of you benefitting from individual counseling in addition to P.D. support groups.
Your husband without a doubt has much apprehension about the progression of the disease and will there be someone there for him. It's a sad fear we all share as nothing is certain in life. I remind myself that I have no choice but to accept the disease, but do have a choice to not let it define me.
Keep communication open.Know that money isn't everything. It may be time for him to realistically assess his ability to remain doing what he did before P.D. for the stress is only going to progress the P.D.
Good Luck!

 
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Old 06-11-2012, 10:18 AM   #20
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pjblake100 HB User
Re: It's getting tough--Parkinson's spouse

Good to hear your viewpoint. I have an on again - off again - relationship with a female (former working RN – but, very religious) and noticed she tires easily. I'm not troubled by that. I am not troubled by the classical symptoms of PD. What does your partner do that is especially helpful? Do you have a satisfactory intimate relationship?

 
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Old 07-23-2012, 10:01 PM   #21
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katnben HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 08-02-2012, 08:13 PM   #22
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Re: It's getting tough--Parkinson's spouse

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

 
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Old 09-11-2012, 07:57 PM   #23
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LuckyNana HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 11-21-2012, 04:45 PM   #24
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AginCajun HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 11-28-2012, 12:15 AM   #25
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Re: It's getting tough--Parkinson's spouse

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.

 
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Old 12-31-2012, 04:51 PM   #26
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meandpd HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 01-02-2013, 02:35 PM   #27
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75andcounting HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 01-02-2013, 05:58 PM   #28
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meandpd HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 02-03-2013, 09:41 AM   #29
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Peglinda HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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Old 02-03-2013, 10:16 AM   #30
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meandpd HB User
Re: It's getting tough--Parkinson's spouse

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.

 
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