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What bothers you most about having PD?


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#1 normafaye

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Posted 24 November 2013 - 10:22 PM

Hi everyone,

I am working on an assignment and would like to ask for your help. It seems that people know very little about PD and when they think of it, they only seem to recognize the overt motor symptoms. Would you mind sharing what are the greatest challenges that you or a loved one face living with PD? What are the symptoms that bother you/them the most (outside of motor symptoms)? What do you wish people knew about PD and how it impacts your life?

 

I really appreciate your time and feedback.



#2 Beau's Mom

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Posted 24 November 2013 - 11:06 PM

Normafaye,

 

Could you please be more specific about what kind of assignment you are doing? Is is sanctioned by a university or school, or is it personal? How will the information you gather be used and who will have access to it? As a student, I was required to inform all people who participated in any research I was doing of the above. I think folks might be more willing to share if they know what the purpose behind it is.

 

Thank you.


Dianne

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

#3 Luthersfaith

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Posted 25 November 2013 - 06:50 AM

At the moment, I get so stiff and out of balance it is hard to wipe my butt without falling off the toilet.  THANK GOD FOR SHOWERS.

Everything takes longer, which adds stress and frustration to life.

Can you imagine what it is like to have to take pills every four hours…   everyday!

It takes 3 times as long to get dressed.

I can't talk about things fast… my thoughts move slower.

I can't sleep all night w/o waking up every two hours. 

I'm 55, but i move like I'm 95.

I've been married for 27 years, and my wife looks great but my sex drive is very limp.

ALL THIS ADDS UP TO FRUSTRATION AND MENTAL FATIGUE.


"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)

#4 johnnys

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Posted 27 November 2013 - 10:14 PM

Were just slow people now

 

Frustration is life.Every thought we have brings on a impulse.How we view that choice decides if we are at peace or unrest.This was taken from some of Dr. Low's work.

 

i view my slowness and clumsness mostly with a sense of humor.I"m sure what I can do today will far exceed many future attempts.

 

Luther I would just say your not as fast as use to be like all of us.



#5 lu states

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Posted 29 November 2013 - 03:37 PM

i want to bring this up as a topic, because i wonder if i'm the only one in this boat.   things were going so bad for me when i was diagnosed, i didn't even care that i had pd.   i knew i had it anyway, so having it confirmed was a relief, in some regards, but finding out i could no longer work ( i was 63 when i lost my job because i could no longer do my job ), was worriesome.    i had been having symptoms for 10 years.  i was a waiter, and at the same place ( with tons of stairs ) for 27 years.   my dog ( my dogs are everything to me ) had just died, i lost my job, i had to move out of S.F., and then i got diagnosed.  i just felt like: " well, oh sure ".   i really didn't care much.   i don't feel embarrassed by my symptoms.  if i saw someone walking around tripping, stumbling, stuttering (!), head shaking, hands shaking, slack jawed and drooling, i'd look to.   they are just curious, and i'm fine with it.   not being able to work has created problems,  i am older and have physical things that prevent my working, but i lost my savings in the last bust in 2008, and now must live on SSD.  what i didn't expect was, they would cancel my SS when i got SSD.   maybe i'm stupid, but i thought i would be able to get both, and get by, just.   now come march, i will be $1,000 short a month, instead of the $300 which i juggle with now.  painfully.  difficultly.    losing my SS will kill me.  i thought with medicare come may when i turn 65,  SS, and SSD i would be okay.   now, i just have this huge stress ( which make my symptoms worse ) where i do not know what will happen to me financially.   i can't be the only one with no funds.   i can't even get snap, i just get a bag of food on tuesday nights down the hill ( thank you people at the food bank ! ).   how do i not become homeless ?   how do i not just give up and die ?   i feel that no matter what agency i contact, they just send me off to someone else, none of which has helped.   so, that is the problem that p.d. has created for me.  can't work, can't live.    i feel like i might be forced to take my life, and i don't want to.  i'm a pretty happy person, i move oddly, and want to afford to get another dog, but i'm fine w/o vacations, or dinners out.   i feel pretty content.....which means i have to kill myself because of money.   such a completely stupid reason.   i couldn't control what happened to my retirement, and now i can't control this.   does anyone have any ideas ?   i hope i answered your question about what bothers me about having p.d.,  only the financial problems that are failing me.    thanks,  lu


Edited by lu states, 29 November 2013 - 03:40 PM.


#6 Beau's Mom

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Posted 29 November 2013 - 08:17 PM

Hi lu. I am only familiar as a social worker with Washington and Texas. Had you retired on Social Security? It doesn't seem fair that they would take away regular retirement payments because you qualify for SSD. Both SS and SSD are based on the amount of years you worked and paid into the system. As for SNAP, the only thing I know for sure that disqualified is a drug felony and if that's the issue, there's not much that can be done. Have you applied for Medicaid in California? I qualify for it in WA with a SSD income of $1200 plus disability from my job until I'm 67 of just under $600/month. It covers medically everything that Medicare doesn't. One thing I did have to do was divest myself of what few assets I had, a motorhome and car which my nearly ex-husband and I owned together. With a lower income than mine, I would think you would qualify. How disabled are you? Would you qualify for a group home, Medicaid assisted living, or a nursing home when you turn 65? Is there any subsidized handicapped or senior housing available? Washington is the best state for social services, and I've heard about CA's financial issues. It seems that even a shelter social worker or Catholic Charities or another faith-based organization would offer some support. County hospitals are another resource if you don't have insurance or are low enough income to qualify. Sounds to me like you need a social worker worth her or his salt to be your advocate. I hope you find what you need. You might call your local APDA or NPF office to see what they suggest. I've heard it said in this very forum, "Don't give up just before the miracle." Best of everything to you, friend.


Dianne

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

#7 jb49

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Posted 02 December 2013 - 10:52 PM

Hey lu,

 

Sounds like you have had some tough breaks.  I hope that some of Diannes' advice is helpful to you.  I am sure that you are not alone in your plight, although I can understand how you must feel it.  Maybe your "rescue dog" is just around the corner.  Good luck to you, have hope.


Don't be hard on yourself, try your best and be strong!




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