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What I Hate About PD


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#1 Luthersfaith

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Posted 10 February 2013 - 06:26 PM

The term "A Walk in the Park" takes on whole new meaning.
"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)

#2 christie

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Posted 10 February 2013 - 08:02 PM

What i hate most about PD...
-the unrelentless progression of symptoms. the thought that no matter what i do i will get worse with time.
-my fear of dementia
-my fear i won't be able to take care of my child-if i ever have one
-my anger for people-families not necessarily excluded- who don't care to understand the severity of young onset parkinson's and its effect on our lives.
-taking more meds than any human body can/should tolerate. having to take meds for side effects caused by other meds and not by the disease itself.
-having to choose-eventually- between immobility and dyskinesia. great options...
-the obligation to feel thankful for all the above because i "won't die of PD".

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#3 DANCER

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Posted 10 February 2013 - 08:24 PM

I hate being embarrassed in public because I have trouble with things like paying at the store for items. I feel so slow and wish people knew why - instead I feel like I am holding up the line...very frustrating. Takes me forever to do such small things.

#4 Daven

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Posted 10 February 2013 - 08:58 PM

Dancer,

You shouldn't be embarrassed if it takes you a little extra time to get it right. People need to slow down, so you're doing your part to make things right. Don't you feel better now.

Dave

Edited by Tired, 10 February 2013 - 08:58 PM.


#5 jb49

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Posted 10 February 2013 - 09:03 PM

Oh my, I don't hate anything about PD. Suffering it has made me a bigger and stronger person. I am glad to suffer it because,,,,what a line of crap I was spinning out .. ha, did I fool anyone? Seriously, good thread start Luther, I hate the shakes and bradykinesia for one, no thats two.. I need my hand back. I try to do things and it is like my hand is cold frozen. Like a dead fish, Like I have mittens on a frozen hand that isn't a hand anymore, it is a frozen fish paw in a bulky mitten. I am right handed and now ol Lefty is learning to do many new things. When mr son of a bitch PD bites Lefty as will happen one day, I will be pretty mad. What will I do then?

Dancer. I hate digging out change to pay for stuff and so I end up accumulating coins. Every so often though I bag them up when I go shopping. I pull out the bag, put it on the counter, explain that I have Parkinsons and it would take me forever to do it with my Parky Paw and ask the clerk to count out what she needs. We have 2 and 1 dollar coins here in Canada (as well as our colourful pretty paper money which is now printed on a polymer) so I often pay for purchases up to 15 or even 20 dollars with my baggy of coins. Clerks generally don't mind, saves them going to the bank for change. Sometimes I have to turn to glare at the guy mumbling behind me. I explain that Parkinsons makes my once nimble fingers slow but at least PD doesn't list rudeness as a symptom.
Don't be hard on yourself, try your best and be strong!

#6 RNwithPD

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Posted 11 February 2013 - 12:44 AM

That's too funny, jb!

Right now, the biggest thing that I hate about PD is feeling dumb or stupid. I have always prided myself on being at the top of my class or being the best at what I do, but now I struggle just to keep up. The information is still there, it just takes longer to pull it up and to remember the names of people, drugs, diseases, etc. Other people (mostly other nurses) now get the impression that I "don't know my stuff" and are starting to treat me like an idiot. It's difficult to swallow my pride and just be thankful that I can probably keep working for another couple of years.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#7 Luthersfaith

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Posted 11 February 2013 - 03:06 PM

Sometimes I have to turn to glare at the guy mumbling behind me. I explain that Parkinsons makes my once nimble fingers slow but at least PD doesn't list rudeness as a symptom.


LLLLLLOOOOOOLLLLLL !
"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)

#8 MarciaJ

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Posted 11 February 2013 - 08:27 PM

What I don't like about PD...

1. Pain moves around my body and when one gets cured it shows up somewhere else. So you never know what part is next.

2. I don't like being labeled 'disabled'.

3. I hate taking pills all day.

4. I forget what I was going to say. Or I can't find something I put away.

My solution...

1. I take one pain at a time. Just don't think about it.

2. If I don't tell and meds are working they don't need to know.

3. I may not like taking pills but if I don't I'll really be a mess.

4. If I follow the path of thought I can come to the same place.

If you can't do anything about it you just have to accept and continue and enjoy as much of life as you can.




<3.<3.<3.

#9 rws2266

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Posted 12 February 2013 - 04:46 AM

I'm with you Kevin, I hate what this has done to my brain more than anything! Upper level math completely escapes me and forget about multitasking. I can deal with the physical symptoms, but the loss of my intelect is devastating. I have to say that PD has given me a new outlook on life, not knowing how many good days I have left makes me want to live each one to the fullest!
Rob

#10 jb49

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Posted 12 February 2013 - 09:26 AM

Right on Rob, as in Y=mx +b where y is good years left, m is attitude and x is general state of health and b is how old you are now. Or maybe that just describes my lifeline, I hate being in a grocery store and deciding to go up another aisle because I know a person coming up the one I was in and I can't think of his first name.
Don't be hard on yourself, try your best and be strong!

#11 joshzach4

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Posted 12 February 2013 - 09:22 PM

i hate walking in general. People tend to think im drunk, and when i do have a few drinks the balance gets worse. And i hate payng for things, thts why a debit card is great.

#12 Beau's Mom

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Posted 12 February 2013 - 11:38 PM

I feel sad that PD has put a wedge in my family. I was always the peacemaker and applied my mother's rule, "If you can't say something nice don't say anything at all." I've lost that ability and when irritated and tired can say terrible, hurtful things to those I love that are probably representative of more than what is going on at that moment. As for the physical, I do better if, like Marcia, I don't focus on it or resist the pain. I focus on something peaceful if I can. This does not mean the pain leaves; it simply means I can tolerate it a little better because my muscles are less tense.

To be perfectly honest, I try not to waste precious energy being mad anymore. It's just too taxing. I apply Lesson 35: I could see peace instead of this." :unsure: It's not resignation, it's acceptance. And it didn't come cheaply--I kicked and screamed the whole way. It doesn't mean I never feel angry or hate my symptoms, but that I no longer hold on to the anger for a second longer than I have to. It takes practice. I saw a sign recently that said, "I didn't say it would be easy, I said it would be worth it."
Dianne

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

#13 DANCER

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Posted 13 February 2013 - 01:07 AM

Dianne
Sounds like you are in a good place. Hang in there - I am routing for you!

#14 Delta

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Posted 13 February 2013 - 07:26 AM

Gee I'm thought m=slope. I'm really confused now

#15 jb49

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Posted 13 February 2013 - 09:15 AM

Delta, never admit to confusion. When m switched to attitude and b become 2b or not 2b that was a question, and we start our sentences with a mixed up confusion of hallucinations and flashbacks and fast forwards, the intercepts of our axis, both y and x become superficial and we need to look at the z one if we are to maintain our sense of wonderment with this world and cause people to wonder if perhaps Parkys have there own aura about them, as they wonder how to get into our club and they envy our designer drugs of trignomic derivatives like Sine amet and they suspect that Cosine amet and Tange amet are just around the corner in development which will vault us Parkys forward. I think.
Don't be hard on yourself, try your best and be strong!

#16 bajansunbabe

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Posted 13 February 2013 - 01:53 PM

I too collect coins.....Peter the vegetable seller in the van down the road rolls his eyes when I give him the baggie of nickles, dimes or quarters but he understands. I too have brain mush and cannot multi task. The thing I hate most is the horrible pain. This morning I had a yard of soil delivered.....I have moved 2/3 of it and am now on my heating pad and know I will be unable to move for the next few days.....but my garden looks lovely! Where did my body go to that use to be able to shovel soil, stack wood, lift weights, and garden for 8 hours straight? I want it back!!!!!!!!!!!!

#17 Luthersfaith

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Posted 14 February 2013 - 03:09 PM

I hate gett'in dressed, I'm joining a nudest camp.
"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)

#18 woodbee

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Posted 14 February 2013 - 03:15 PM

I hate the sweats at night and anytime I get even mildly overheated. i'm drenched ,especially my head. Perspiration all over my face and hair and most uncomfortable.
and pain....blah

#19 DANCER

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Posted 14 February 2013 - 05:23 PM

Luthersfaith you made me think of of something else I hate about PD..trying to get my pants off when I have to go to the ladies room in a hurry...especially jeans..
you get the idea

#20 Beau's Mom

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Posted 14 February 2013 - 06:35 PM

With one arm temporarily out of order, I am doing my best to be fashionable in Dickies elastic waist carpenter pants--purple, khaki and black. I have not thrown away my jeans! The pockets carry anything essential because the other arm holds a forearm crutch so I don't have to be in a wheelchair all the time.
Dianne

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




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