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What I Hate About PD


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#241 chelle

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Posted 06 March 2014 - 10:32 PM

I hate this.... I hate that my pain is so bad that I pray to die.... I cant take it anymore. I pray every night to be able to sleep, to not have to say I feel bad, for the strength to get through another day of hell, I pray that my kids dont see my pain so I get up and I push through. I can barely make it through wiping the counters without my hands being cramped. I loved life and fishing and hunting and baseball. Now I hate waking up. Im 31 I should be happy and enjoying my boys. I hate feeling like a burden on my husband who is so amazing. I dont even tell him or anyone how bad it is. But I really effing hate this!









Im quoting myself here. Today has been a much better day then yesterday. I have to believe prayer works cause God has saved me many times. Today as much as I hate PD I am so thankful that if even for a day God has taken my pain away..... and I take no pain meds so I most definitely need GOD.

#242 Brad24

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Posted 06 March 2014 - 10:47 PM

I really hate that going to work has been exhausting me lately.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#243 Luthersfaith

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Posted 15 March 2014 - 10:50 AM

I hate that I have to deal with hating PD.


"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#244 DanC33

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Posted 18 March 2014 - 09:30 AM

Luthersfaith, I couldn't agree more! 



#245 coacht

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Posted 21 March 2014 - 08:42 AM

The thing I hate about PD the most even though I don't have it, is the loss of intimacy with my wife. This goes to all levels of
intimacy, emotional, intellectual, physical. it was interesting that I didn't see anyone with PD mention this, other than a bit of the physical. We can't even hold hands because she interprets that in some strange way.

Edited by coacht, 21 March 2014 - 08:43 AM.


#246 Beau's Mom

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Posted 21 March 2014 - 01:03 PM

Hi Coach,

 

All of the above went away between my spouse and me after I was diagnosed in December 2010. To be totally fair, he was grieving the loss of his beloved Yorkie Beau around the same time. He took Beau from Texas to rural PA to visit his older sister with PD, and left Beau with her, incapacitated in a wheelchair, to watch him, while Ray came to the airport in Buffalo to pick me up on Thanksgiving Day. Beau got out a back door and was never seen again. Ray blamed his sister.

 

The next month I was diagnosed. The next month, his sister died. He wouldn't even talk to her family. As I adjusted, not always graciously, to my diagnosis over the next two years, Ray became more and more distant. He's not the caregiver type and hates doctors. By fall 2012 he admitted he didn't want to ever have to touch me and he was afraid I could cause the loss of his new Yorkie, also named Beau. He moved me to assisted living.

 

Last spring he up and left without a word and stayed incommunicado because he didn't want to have to divide the assets. I found out his location in November and our divorce is final, and a trust has been set up for me to help with things insurance doesn't pay for.

 

I now live independently with a caregiver 27 hours a week. I have clubs and other activities, and find I am happier without the stress which would have undoubtedly continued because of his unwillingness to change. But it was hell while I was going through the letting go process.

 

Have you expressed your feelings to your wife, or tried marriage counseling with a therapist who is familiar with the stress of long term debilitating disease on a marriage? I think that's probably the best suggestion I have. There have been times during this whole ordeal where I was a total bitch as I grieved both having PD and the loss of my marriage. I know how hard it has been on me, I feel empathy for you because I know how rejection you did nothing to cause feels. I wish more people were willing to talk about it.

 

Thanks for your post.

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#247 MjolnirTime

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Posted 22 March 2014 - 12:10 AM

I hate the unpredictability. Seems that it doesn't take much to give me a bad day. Right now I think an antibiotic is messing with me. I feel like I'm completely off medication. I guess I'll call the PCP in the morning and ask for something else.

#248 coacht

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Posted 22 March 2014 - 09:20 AM

Dianne,
We have tried so many things, but the cognitive aspects and pride get in the way all of the time. She can never admit there is a problem, so there we are. The cognitive problems are getting worse and I am tired of having the same questions asked over and
over about something like, are you going to this event tonight. She just isn't able to concentrate and listen more than forgets I think.

#249 Beau's Mom

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Posted 22 March 2014 - 12:46 PM

Coach,

 

My mother is finally concerned about my dad's frequent repetition of the same questions. In researching Alzheimer's and dementia this week, asking the same question over and over is a sign of dementia. Has your wife had any neuropsych testing done? That would quantify any dementia she might have. There are tons of Alzheimer's and dementia caregiver support organizations. It has been my experience that at PD support groups this is a taboo topic.

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#250 coacht

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Posted 23 March 2014 - 07:21 PM

She has had neuropsych testing done, but it has been a while. I think it is more that she is distracted and not really paying attention. That is common according to the neuropsychologist we saw for a while.

#251 Beau's Mom

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Posted 24 March 2014 - 12:14 PM

My recent neuropsych testing was to set a baseline. It will have to be repeated every so often to see if there are any changes. It might be worth asking your wife's MDS about. Good luck!!!

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#252 Luthersfaith

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Posted 29 March 2014 - 07:11 AM

So

what do you hate?


"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#253 MjolnirTime

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Posted 31 March 2014 - 03:27 PM

I hate that my hand seems to be starting to claw up.  It's just my ring and pinkie fingers right now, so it really only interferes with typing, but it's still progression, and I'm not digging it. 



#254 RNwithPD

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Posted 01 April 2014 - 12:59 PM

Right now I'm hating that I can't plan for my financial future because I have no idea how much longer I'll be able to work.  I'm on an emotional roller-coaster....up one day and down the next.  Sometimes up and down on the same day.  Optimistic, then pessimistic.  MDS says that my symptoms are still relatively "mild."  If that's the case, then I am REALLY in trouble. I'm worn out and hurt enough as it is, and troubles at work are not helping.  I can't imagine it getting worse.  If ONLY it were tremors....it might not be so bad.

 

Kevin



#255 afroney

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Posted 01 April 2014 - 10:13 PM

Right now I'm hating that I can't plan for my financial future because I have no idea how much longer I'll be able to work. I'm on an emotional roller-coaster....up one day and down the next. Sometimes up and down on the same day. Optimistic, then pessimistic. MDS says that my symptoms are still relatively "mild." If that's the case, then I am REALLY in trouble. I'm worn out and hurt enough as it is, and troubles at work are not helping. I can't imagine it getting worse. If ONLY it were tremors....it might not be so bad.

Kevin


You and me both.

I try to look at it on the bright side. At 28, I tell people I won't have to worry about saving for retirement, because I probabally won't live that long!

#256 DanC33

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Posted 04 April 2014 - 08:10 AM

I have something new for me to hate. I have started losing my voice! I know that happens to all PWP at some point, but I thought I'd have more time before that happened.

Now my wife is always telling me to speak up or she thinks I have a sore throat.  



#257 TNdad

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Posted 04 April 2014 - 08:47 AM

Every single day it reminds me that it's never going to go away.  Even on the "good" days, it still manages to trip me up like a school yard bully. @#$!!



#258 Annikin

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Posted 08 April 2014 - 09:30 PM

I know I will probably catch a lot of flack for this but I hate the word "Parky"- it comes across to me as a cute description of a horrible disease. My dog's name is Sam- so we all call him Sammy- it is a term of endearment to nickname someone and add a "y" or and  "ie" to their name- PD does not deserve this- I refuse to like it, welcome or give it a cute nickname. Is there any other disease where people give it or themselves a catchy nickname related to their illness? Sorry- I know some of you happily use the word regularly but to me it is like nails on a blackboard. I have PD - I am not PD.  I am a lot of things- Parky is not one of them. I feel better having got that off my chest. No personal offense meant to anyone, just my 2 cents.  Remain calm and carry on...... :)


Edited by Annikin, 08 April 2014 - 09:31 PM.


#259 Beau's Mom

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Posted 08 April 2014 - 09:44 PM

PWP is an option, Annikin. It stands for Person(s) With Parkinson's. I'm one whose gotten used to the term Parkie or Parky--except it's hard to use either without thinking you're leaving out one gender or the other. Parkies is plural for both, I guess. I think perhaps shorter is easier when typing is difficult. In that case, PWP is the shortest of all! Thanks for sharing your feelings!

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#260 Annikin

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Posted 09 April 2014 - 09:59 AM

I can live w/ PWP- guess I I have to, quite literally right. I work for the government so those 3 letter abbreviations come much easier to me. 






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