It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Parkinson's Disease Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 02-03-2013, 12:08 PM   #31
Senior Member
(female)
 
Join Date: Jun 2008
Posts: 265
cejayb HB Usercejayb HB Usercejayb HB Usercejayb HB Usercejayb HB Usercejayb HB User
Re: It's getting tough--Parkinson's spouse

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.

 
Reply With Quote
Old 03-20-2013, 11:10 AM   #32
Newbie
(male)
 
Join Date: Mar 2013
Location: Albany, NY
Posts: 2
decarr1 HB User
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
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.

 
Reply With Quote
Sponsors Lightbulb
   
Old 03-20-2013, 11:12 AM   #33
Newbie
(male)
 
Join Date: Mar 2013
Location: Albany, NY
Posts: 2
decarr1 HB User
Re: It's getting tough--Parkinson's spouse

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.

 
Reply With Quote
Old 03-30-2013, 05:45 PM   #34
Newbie
(female)
 
Join Date: Mar 2013
Location: lancaster ca
Posts: 1
sandii HB User
Re: It's getting tough--Parkinson's spouse

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.

 
Reply With Quote
Old 05-10-2013, 08:01 AM   #35
Newbie
(female)
 
Join Date: May 2013
Posts: 1
Cwbee HB User
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
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.

 
Reply With Quote
Old 05-25-2013, 11:52 AM   #36
Junior Member
(female)
 
Join Date: Apr 2013
Location: Las Vegas N.V. USA
Posts: 16
BuffaloBuffalo HB User
Re: It's getting tough--Parkinson's spouse

I see that this is an old post but I will reply any way. My husband has PD and dementia. Yes eventually it becomes the new normal, and I have more or less adjusted. Well, adjustment means funtioning and not having panic attacks.

 
Reply With Quote
Old 05-27-2013, 10:03 PM   #37
Junior Member
(female)
 
Join Date: May 2007
Location: Lansing, MI
Posts: 23
Andyck HB User
Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by BuffaloBuffalo View Post
I see that this is an old post but I will reply any way. My husband has PD and dementia. Yes eventually it becomes the new normal, and I have more or less adjusted. Well, adjustment means funtioning and not having panic attacks.
My husband was diagnosed with PD about 3 years ago. Looking back I can see that his PD started at least 2 years prior. Recently he had a neuro-psych test for his cognitive functions that diagnosed him with mild dementia. I could have told the doc's he had it without the test, but needed the test for record. My husband's condition has been deteriorating at a fairly quick pace. Every month his condition worsens a little bit more so our "normal" is constantly changing. I cry every day when I see what this terrible disease is doing to my husband, to the man I fell in love with, the man that is slowly disappearing. Make sure you have a neurologist that specializes in PD, a general doc that understands your husband's condition and will work with specialist's, and possibly a psychiatrist to help him work through the issues he is going through with this disease. I have a great team of doc's for my husband, they communicate and coordinate their treatment for him. Without this team, I would be even more lost than I am.

 
Reply With Quote
Old 05-27-2013, 10:13 PM   #38
Junior Member
(female)
 
Join Date: May 2007
Location: Lansing, MI
Posts: 23
Andyck HB User
Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by Cwbee View Post
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.
I know exactly how you feel. The strongest part of my husband and my relationship was our communication, and now it doesn't exist. I miss it so much. Because of his dementia our communication is down to a quick 3 or 4 minute conversation. It causes huge frustrations and arguements, all of which I feel so guilty for afterwards. There are days I don't know how to get past it and just want to leave, but I know I can't and never will.

I'm glad you posted here because I too needed to vent and feel there is no one to vent to without feeling guilty or like a bad person.

 
Reply With Quote
Old 05-28-2013, 08:00 PM   #39
Newbie
(female)
 
Join Date: May 2013
Posts: 1
AlaPD HB User
Re: It's getting tough--Parkinson's spouse

My husband was also diagnosed with A-typical parkinson's in December although they thought had talked with us last may about it appearing that he had parkinson's on parkinson like symptoms. He also has a lot of other health problems. He has a pipe across his abdomen due to a 3" 100% blockage and they cut the femoral nerve so he now has severe neuropathy. He has 1 stent, peripherial artery disease and the list goes on.

He takes a ton of meds and has been put on 2 PD meds taken 4 times a day.

He went to the Dr. last week and they said his PD was progressing fast and they want him on a walker at all times. Said if he fell and broke a hip he would not recover due to his other health problems. This seems to be progressing a lot faster than what we expected. He falls often, gets the frozen in place thing, and is always in pain. It never stops. He has been on disability for a few years bc of his other health problems. He's 59, I'm 13 years younger than him. Our plans were to travel when our kids graduated and moved out. Now our only travel together is to the drs office.
I work part time, no way I could work full time and take care of him, getting him to the dr. etc.... If i go anywhere I go alone. I feel so guilty for feeling lonely and depressed. I love him so much but he's like my child now. I feel awful saying that! This is so hard and I feel so overwhelmed and I just don't know what to do for him. It breaks my heart and all I want to do is cry.

I'm so glad I found this sight! I hope to learn from others here how they cope with their spouses PD.
Thank you for listening!!!!!

 
Reply With Quote
Old 06-02-2013, 05:42 PM   #40
Newbie
(female)
 
Join Date: Jun 2013
Posts: 2
Reinrgrl HB User
Re: It's getting tough--Parkinson's spouse

I know EXACTLY what you are feeling. My husband, a former chief of police, now literally cannot discuss simple ordinary things pertaining to,the house or cars, kids.....he becomes defensive and all I'm trying to do is keep him in the loop and show him i still want his input. Truth is....he is alienating himself from his family more each day. He is a bottomless as far as needing attention and reassurance and even when I provide it, he still tells me I don't care and that I ignore him. He never ever used to treat me like this. He is making everyone around him miserable. His kids avoid him. I have to walk on eggshells. He's had pd for 5 yrs. got,it at 47'. It's progressing fast. He has depression, hallucinations. Paranoid behavior...accuses me of cheating...which is out of the question! This is hard...I am sleeping in a different room because he is so restless at night. I love him...but not in love anymore. My heart aches for the man i married but he is gone. I don't know what the future holds,or how I will afford full time care for him

 
Reply With Quote
Old 06-02-2013, 05:54 PM   #41
Newbie
(female)
 
Join Date: Jun 2013
Posts: 2
Reinrgrl HB User
Re: It's getting tough--Parkinson's spouse

Dear AlaPD...I cry a lot too. At first I was grateful he didn't have cancer or something terminal....now I wish it was...at least there would be an end to the suffering in sight. My husband is not the same man...can't take stress..discuss anything rational. Wants ,y constant attention and then tells me I ignore him! I cannot win, please him or make him feel better so I and pulling away from him so I can stay sane, work and raise my family. My husband is 51 going on 10.
I'm sad a lot and I worry my friends will get tired of my sadness. I try to do things that make me happy....they don't include my husband anymore. It's like traveling with a small child. I need a break from pd..when I do get to go somewhere he tells his family that I have left him all alone with no food or care! He manipulates every one around Him to feel sorry for Him and wait on him. He asks for help getting up without trying. He wants help doing things he can easily do himself...it's maddening.
Then he feels bad for being a jerk and wants to make it up...we are in a cycle of abuse. I'm feeling trapped and hopeless. He refuses to do therapy of any kind to help himself physically or mentally. I'm so angry and resentful. This is my life for God only know how long.

 
Reply With Quote
Old 06-04-2013, 12:19 AM   #42
Junior Member
(female)
 
Join Date: May 2007
Location: Lansing, MI
Posts: 23
Andyck HB User
Re: It's getting tough--Parkinson's spouse

AlaPD My husband was diagnosed with PD 3 years ago, but looking back now I know that he had symptoms of the disease for at least 3 years prior. If his primary care physician had taken more time and been more aware of what was going on with my husband he probably would have been diagnosed sooner. That is why I changed my husband's primary care doc to mine. She is more thorough and aware of subtle changes. Because of this mis-step by his primary care doc, at first my husband's progression seemed to be advancing at an extreme accelerated rate. It was accelerated, but not as fast as it appeared due to misdiagnosis on the part of his primary care doc.
My husband is on one PD med for his gait issue. They wanted to add another med but due to reactions he is having with all the other med's he is on for BP and Cancer, they are reluctant to add any other meds. He is having problems with his BP dropping and causing dizzy spells, fainting, and passing out. He's been admitted to the hospital twice for this, and no conclusions can be found other than PD and combo of meds. So we are in a trial and error process of manipulating his med timings and dosages. The last two weeks have been positive so I think we've found the right dosage and timing however now he is starting to have the "frozen feet" and "stutter turns" again. We can't increase his dosage without causing issues with his BP. One thing most people do not know is that PD affects how a person's body effectively controls BP and other auto functions.
My husband is 64 and I am 56. We had so many plans and our strongest connection was our conversation. We are lucky now to have a 3 minute talk.
I am currently working 3rd shift so I work when my husband is sleeping and home with him during the day. I stay up until he's done with his morning round of pills and then "nap" on the couch until early evening so I can be aware of what he is doing. I schedule his doc appt's on my days off or early morning so I can try to get some sleep on the days I work. It is getting tough and don't know how much longer I can do it. I do appreciate everyone here for understanding because I know that no one understands or gets what we are going through.

 
Reply With Quote
Old 06-04-2013, 12:49 AM   #43
Junior Member
(female)
 
Join Date: May 2007
Location: Lansing, MI
Posts: 23
Andyck HB User
Re: It's getting tough--Parkinson's spouse

Reinrgrl... Your posting hit me especially hard because my husband not only has PD but he also has Prostrate Cancer. He was diagnosed with Prostrate Cancer in 2000 and has gone through every treatment and therapy available to remove and keep this disease at bay. He has been on the last and final treatment for over 5 years, which should have given him only 2 years. It had metastisized to his lungs but the treatment has kept it from spreading and has reduced to nothing - something unheard of for this length of time.
Now he has PD that is progressing rapidly. Given the odds he has battled, I sort of wish he had just the cancer!!
I know what you are talking about referring to personality changes. I see it everyday in my husband. He was an airline pilot and aviation technician. Now he can't even sort socks. I know how frustrating this is for him and how angry it is for him. I see the anger and frustration in his face and actions, and in his reactions to other situations. I know it's not an excuse but men who had jobs that were so mentally and physically challenging and are unable to do them, had jobs where they had to be in control and now can't control the slightest movement, must create so much anger and frustration. Have you tried getting your husband to psychological, psychiatract therapy, or a support group? I tried to get my husband to go and he pushed back for a long time, but eventually I was able to get him to go with the help of his primary care doc. She suggested it in words that got him to listen.
I also suggest that you seek out a support group for spouses of PD patients. I'm not suggesting you change your mind about your feelings, rather you find help in how to deal with how you are feeling. I am just about where you are. I'm not sure how much longer I can stay in this situation. I don't want my feelings for my husband to change, but I don't want to abandonded him either.
I don't know what I would do if I were in your situation, but I offer you lots of support and (((HUGS))), and understanding.

 
Reply With Quote
Old 07-04-2013, 01:15 AM   #44
Junior Member
(female)
 
Join Date: May 2007
Location: Lansing, MI
Posts: 23
Andyck HB User
Re: It's getting tough--Parkinson's spouse

I want to update you on my husband's status. His Parkinson's contiues to deteriorate. His gait is getting worse. His neurologist does not want to increase his meds due to the side effects of dizzy and lightheaded feelings. We are facing choosing between making his gait better or reducing his dizzy spells. Not sure which is better. Ron is also having more instances of what I call "blacking out". Times where he isn't sure of where he is within the house, and having siezure type episodes where he loses all control. During these episodes he shakes and makes a sound that can only be described as "Ahhhh, Ahhhh..." He cannot hear me, doesn't respond to me, and is limp.

I don't know what to do. I'm scared about what the next step is.

If any one can give me any suggestions or ideas, I would greatly appreciate it. I love Ron so much and want to do everything I can to help him.

 
Reply With Quote
Old 07-04-2013, 09:30 AM   #45
Junior Member
(male)
 
Join Date: Feb 2013
Location: Chicago Il USA
Posts: 12
sparky1109 HB User
Re: It's getting tough--Parkinson's spouse

Your husband must be suffering from lewey body dementia, or possibly Alzhiemers, but whatever it is it sounds like something in addition to PD and not PD itself.

 
Reply With Quote
Reply Reply

Tags
parkinson spouse, parkinson's disease, parksinson support



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



Mod08 (4), cejayb (3), saintlyme (2), annaparky (2), pete (1), n_clemens (1), Bruce (1), rosequartz (1), angelkissesx5 (1), JohnR41 (1)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 09:06 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!