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WindsongMoonChild

I was cured!

45 posts in this topic

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

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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!  8)

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I do a lot of pretending.

 

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

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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

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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!

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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?

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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!

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

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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?

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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... 

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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. 

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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

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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

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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. 

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"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

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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??

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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

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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. 

Thank you, G01... they made me smile, too!

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

 

 

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

I'm so sorry to hear it, christie... have your symptoms worsened?

 

LOL... So long as we don't try walking, talking, and chewing gum at the same time, we may just manage to avoid a Parky dance floor pile up!

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Kim, to answer your question, yes, I have wanted to hang it all up some days. Not for over a year, though. When I got too depressed, I would check myself into a psych unit to be safe. I had to go through some rough changes, such as the end of my marriage, being locked up in a truly loony bin, where there were no bed rails to pull myself up, over or out of bed, and the doctors and nurses refused to give me Sinemet, saying I didn't need it.  Meanwhile, the orderlies laughed when I couldn't get out of bed to pee and just told me if I wet the bed I'd have to wash the sheets. I was there nine days after getting depressed being abused in an adult family home and having nowhere to go.

 

What all that did for me was to force to me turn inside and find a source of strength not my own. In that chaos, because I finally became willing to surrender everything as being out of my control, I was able to find peace and calm, though the situation was still crazy. I left there, lived in a hotel for four months, then moved by myself into this brand new non-government controlled moderate income apartment building. I have a caregiver who comes in 27 hours a week to cook and puree food, clean, do laundry, prepare meds, and help me shower.

 

My husband finally re-emerged, having gone from Seattle, to North Carolina and back to Texas where we started. He burned up or hid about $40,000 of assets, half of which was mine, so when we finally divorced and he had to divide the property, my trust was $40,000 instead of $60,000. I can't use that money for rent or food, as I get state assistance for medical, but I can buy toilet paper and other necessities. My sister does all the purchasing. I'm warm, fed, have friends here online and in person. I have free transportation to all appointments. My caregiver is delightful. We go shopping, to the movies occasionally, and when the weather is nice, I can go outside with either my walker or electric wheelchair. I have to say, this beats the heck out of living in a 35 foot motor home with a husband who resented me, refused to touch me, and left me for the dog!

 

I can't tell you how grateful I am to have reached a stage of non-resistance. That does not mean I've given up. It just means I've quit the futility and learned to relax into what each day brings. I have chosen to be happy rather than right, and let people be who they are. When I upset myself over "who they are", I have the haven of positivity in my mind and can close the door to my apartment. I rest when I want to, write or study or putter when I have the energy, and thank God every day that I no longer have to run my life. Ironically, this has given me complete control of my finances, my health and well being, and who I choose to interact with. Even my mother, who told me 16 months ago she knew lots of people with PD who didn't behave like I did (all one of them) has come around. I refuse to interact with anyone who is remotely abusive because I don't want to do that to myself any longer. It took me 60 years to give up control, and, in the end, it was a huge relief and blessing.

 

The beginning stage of this process for all of us is, of course, denial. I can still find myself there with a new loss or difficult change, but my face is no longer muddy from laying face down in the river of DeNile. (That line is not original to me, so if you find it corny or unfunny, you'll have to find the person who first said it to some drunk in AA.)

 

Is having PD too high a price to pay for peace, joy and love of self? Not for me.

 

Didn't mean to ramble. I guess I needed to get that out all in one piece.

 

Dianne

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Kim, check your personal mailbox. Either it's not set up or it's full and I have some info for you on YOPD support group lists.

 

Dianne

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Dianne,

 

First, thank you for telling me about the mailbox thing--I didn't realize it had to be "emptied" once in a while!

 

Secondly...

 

Finding a place of peace, I think, is imperative in life--with or without a disease to deal with--but, finding such a place after the kind of struggles you have endured, is nothing short of Herculean, to say the least, I'd say.  How comforting it sounds to me, that you have come to a place of owning--truly owning--your own life.  Even the things you cannot control do not control you.  

 

Thirdly...

 

I'll send a personal message to pick your brains about the other thing I am curious about!!

Kim

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