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I was cured!


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#1 KimAgain

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Posted 27 March 2014 - 09:30 AM

So, here's the thing, I was just SO tired of having Parkinson's Disease.  SO fed up with the ups and downs, the whole, "being sick" thing.  So, I woke up one morning and pretended it away!  Woo Hoo!  I've been busily wishing this crap into the cornfield for months now... doing yoga... drinking green shakes... meditating... hugging the occasional tree... not checking in on the YOPD forum (after all, "those people" have a disease that I did not) that sort of thing.  Now, you may be thinking, "O.K., Kim, how's that working for ya?"

 

Like crap.

 

I've missed you all.

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#2 she-ra

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Posted 27 March 2014 - 09:34 AM

Kim, I do the same thing - totally stopped taking my meds.  I can only pretend so much.  I know I will need to get back on soon or my job will be in jeopardy.

 

I am grateful to see you back on here!  :cool:


Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#3 MarciaJ

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Posted 27 March 2014 - 09:59 AM

I do a lot of pretending.

I forget my point. I just want to not think about anything.
<3.<3.<3.

#4 Beau's Mom

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Posted 27 March 2014 - 10:11 AM

It's good to hear from you, Kim! I stopped writing in the forum my first year, for several months, because I was just pissed off at the cheerfulness and couldn't feel the support. That certainly was not the Forum's fault, though. I didn't have a face-to-face group and I wanted one, and this wasn't it! Can you hear the three year old Dianne stamping her feet and demanding that things be the way she wanted them to be?

 

And, just like your "cure", it worked like crap!!!

 

jb on the Good Morning thread was the one who welcomed me back with his wide grin, no questions asked, just glad to see you attitude. I was so grateful.

 

So, denial didn't work. Now you can wind your way in and through and under the other stages of grief, slipping in and out of each stage as you see fit. When I finally reached acceptance of YOPD, and all the people in my life who disappointed me by not making me happy whenever I snapped my fingers and said, "It's your job!", I became happier, more at peace and even grateful for some of the gifts PD has brought me. Like time in the mornings to connect with everyone I love. My browser opens to the New Content page!

 

Welcome home, KimAgain (or Kim Still)!

 

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.

#5 KimAgain

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Posted 27 March 2014 - 10:15 AM

Good ol' Sheila, always understanding.  There's a saying, "Denial is NOT just a river in Egypt!"  Sheesh.  Here's the thing, I was just getting so frustrated, I wanted an easier life, with no more juggling, no more physical inconveniences.  I really, I now understand, need a DBS/YOPD support group in my area, but in ten years of looking, I've had no luck finding anything other than a general PD support group--and all the very nice people in that group were, well, just not dealing with the same things I am.   Is there a nationwide list, I wonder, of support groups for YOPD, DBS patients, or people wishing to start one?

 

There was one area in which I kept connected...

 

A year or so ago, a young man posted about his struggle to get a diagnosis and, being very young he was a little impatient with the responses he was getting and, I think it's fair to say, was frustrating some on the forum with his, shall we say, "youthful impatience."  I sensed how frustrated he was becoming and, when he stopped posting altogether I found myself worrying about him.  I reached out in messaging and gently offered to hold his hand.  We exchange texts these days when significant things happen, or just to check in... He has since married, continues to work, still struggles as I guess we all do, but he calls me his PD Mentor and reaches out when he is worried about something, or just to say hello.  I only mention this because I wonder if we might start some sort of YOPD/PD "mentoring," thing in which interested parties can post their personality profile and other persons can reach out in messaging or something?  A sort of, "yopdmatch.com" kinda thing?  Just a thought.  Probably a bad one.

 

Yayy Sheila!


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#6 KimAgain

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Posted 27 March 2014 - 10:31 AM

Dianne, always so solid, thank you for the welcome.  Sheesh, do you ever feel as if PD is a "death of a thousand mournings"?   No sooner do I come to terms with one loss, than I'm back grieving another!  All the stages, all of them, every time.  I try SO HARD (and, usually succeed) not to dwell on my losses but, rather, to focus on my abilities and blessings... but, frankly, some days I feel my British aplomb leaving me in a big way!  

 

Facing my condition was, in fact, the reason I changed my name from WindsongMoonChild to KimAgain... I felt, at that time, that I had been hiding behind a pretty pseudonym because I did not want to, essentially, admit that I, Kim Abston, have PD.  It seemed like a big thing at the time.  Funny creatures, we humans, aren't we?


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#7 KimAgain

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Posted 27 March 2014 - 10:33 AM

MarciaJ,

 

Your post made me smile!  Thank you for taking the time to say something at all, especially when you do not want to think about anything!


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#8 christie

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Posted 27 March 2014 - 10:34 AM

Kim !! You are back !!! Wow !!! I'm so happy to see you posting again I could dance!! Seems like I am cured too !!! LOL!!!


-English is not my first language !

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


#9 Vanillab1027

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Posted 27 March 2014 - 10:37 AM

Great to see you again, Kim! :)

#10 KimAgain

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Posted 27 March 2014 - 10:39 AM

Awww... Christie!  Wow... wouldn't THAT be a sore sight for good eyes!  A bunch of Parkies dancing!  I'm not sure if it would be just funny OR, down right terrifying!  Talk about a room full of left feet...

 

How have you been, oh Guru of all things sane and balanced?


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#11 KimAgain

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Posted 27 March 2014 - 10:39 AM

Thank you VanillaB... you, too.   Are you well?


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#12 KimAgain

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Posted 27 March 2014 - 10:42 AM

Sheila Dear,

 

How did your symptoms respond to the no-meds approach??


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#13 christie

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Posted 27 March 2014 - 08:22 PM

Awww... Christie!  Wow... wouldn't THAT be a sore sight for good eyes!  A bunch of Parkies dancing!  I'm not sure if it would be just funny OR, down right terrifying!  Talk about a room full of left feet...

 

How have you been, oh Guru of all things sane and balanced?

 

Not that good my friend...much better now that you're back.

 

 

Let's all keep walking and dancing  together... 


-English is not my first language !

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


#14 Golden01

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Posted 28 March 2014 - 08:21 AM

Welcome back! All these posts made me smile this morning. So much wisdom and support. Thank you. I've found a little denial from time to time gives me a bit of space and time to adjust to things. That is not necessarily a bad thing. 


Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#15 jb49

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Posted 28 March 2014 - 12:28 PM

Denial, Yes.  I too decided that I was bigger and badder than Parkinsons and I would continue working my construction work.  It wouldn't stop me.  Then I started catching my reflection in a window.  Who was that with the clenched arm. Who is this tripping over the cords, who is that looking up a ladder.  Is that really my hand shaking with that saw? (stand back everybody). Trying to hold the drill straight and not drop the screw.  My arms used to get tired and start to shake holding drywall on the ceiling and fastening it up.  Add some parky tremor to that combination! Yes. bitter medicine, this realization crap that maybe this is time to stop pretending that I can still do it.  Anyways, last fall, I decided that it was time to quit and apply to a disability insurance program that I had paid into for years. It doesn't pay that much but it is regular, (I was self employed) and I am safer now.

 

Oh yes, speaking of being cured,  After the cheques came for about 3 months, the agent handling my claim called me and asked if I was any better.  I replied that I had Parkinsons. Yes, he replied, but won't you be better sometime?  I told him that  "I would love to be cured and symptom free so that I could work again, but It isn't very likely.   Parkinsons doesn't go away, it gets worse."  He replied that he never really knew that.  Hmm, well as long  as the cheques keep coming,

 

Good to see you again Kim.  I did a double take when I read about you "drinking green shakes"  I read it as "drinking green snakes".  And I thought uuuum, what kind of alternative medicine is she into.

 

Take care All.

 

jb


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

#16 sarahjo

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Posted 28 March 2014 - 02:00 PM

KIM I HAVE MISSSSSSED YOU AND YOUR POST, its been a bit since I have been here myself, only because of life, and its crazies,,,,, explain later tonight when I have time, but THANK GOODNESS YOU ARE OK,,,,, missed you.. We really NEED each other on here. check in later.. tata for now.. much love sarahjo



#17 AnthonyB

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Posted 28 March 2014 - 03:55 PM

Welcome back to the fold.

 

On a side note i'm off all pd meds atm and having two shots of b12 a week which hasn't "cured" me but has worked wonders so far. 



#18 KimAgain

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Posted 28 March 2014 - 10:57 PM

"Denial, Yes.  I too decided that I was bigger and badder than Parkinsons..."

 

 

I'm starting to see--thanks to the honesty of this forum--that this is a rather common approach to this disease... at some point or another in the process, many of us seem to go there.  A sort of "uber denial," I guess!  Not a bad thing or a good thing.  Just, a thing.  At the end of the day, the most emotionally healthy outcome, I suppose, is to come to terms with it--as you seem to have done, jb--and I am still working on.

 

 

 

Oh yes, speaking of being cured,  After the cheques came for about 3 months, the agent handling my claim called me and asked if I was any better.  I replied that I had Parkinsons. Yes, he replied, but won't you be better sometime?  I told him that  "I would love to be cured and symptom free so that I could work again, but It isn't very likely.   Parkinsons doesn't go away, it gets worse."  He replied that he never really knew that.  Hmm, well as long  as the cheques keep coming, 

 

LOL... I had a similar thing happen to me about two weeks after my diagnosis.  I had a call from a supply house I'd done business with for several years and the girl calling was obviously new, so they'd apparently supplied her with a script to follow.  Every time I'd politely decline a supply of something she was selling, she'd respond is this ridiculously perky and singsongy voice with a line from her script.  Finally, I just lost my patience with her and blurted out, "Look, I've just been diagnosed with Parkinson's Disease, which is a progressive, degenerative disease that will likely put an end to my ability to use what your selling in pretty short order, so NO, I do NOT want anything, thank you very much!"  Undaunted, she sang--directly from her script again--"Well, isn't that just terrific!  I want to wish you luck with that!  Now, can I interest you in some... "  I hung up on her.

 

 

 

Good to see you again Kim.  I did a double take when I read about you "drinking green shakes"  I read it as "drinking green snakes".  And I thought uuuum, what kind of alternative medicine is she into.

Good to see you, too, jb... and, the farthest afield I get in the realms of alternative medicine is raw veggie and fruit shakes--spinach often accounting for the green part.  Snakes?  I'll leave those to the rare persons who are stranger than I!

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#19 KimAgain

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Posted 28 March 2014 - 10:59 PM

Welcome back to the fold.

 

On a side note i'm off all pd meds atm and having two shots of b12 a week which hasn't "cured" me but has worked wonders so far. 

Thank you AB... how are your symptoms with you off all PD meds??


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#20 KimAgain

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Posted 28 March 2014 - 11:02 PM

KIM I HAVE MISSSSSSED YOU AND YOUR POST, its been a bit since I have been here myself, only because of life, and its crazies,,,,, explain later tonight when I have time, but THANK GOODNESS YOU ARE OK,,,,, missed you.. We really NEED each other on here. check in later.. tata for now.. much love sarahjou

Sarahjo,

Your post truly did do my heart good!  Catch me up, catch me up--can't wait to hear all your news!  I've missed you, too, dear,

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.





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