"Its Me Again"

"Its Me Again"

I cannot tell you how much the Arts have played in my life. My Father painted with oils, my Mother liked watercolors and sculpting in clay. My older brother John, whose Artwork I featured on my own Artwork page: facebook.com/pages/Psycho-E... is an exceptional Artist with varying degrees of expertise in many aspect of the Art world. My older sister was a wonderful actress, singer and dancer. All my life I have been writing poetry, painting, and sculpting in clay. I thought everybody spent thier summers visiting the new exhibits at the Art Museum, exploring every corner of the science museum, or watching the local theatrical troupe put on plays in the park on the warm summer nights.

Poetry has always been my first love. It is so much an extension of myself, giving the feelings of a shy, overweight girl a voice. My words made me stand out among 6 siblings! I have written thousands of poems exposing my soul, my inner most feelings, my self doubt and my dreams of the future. Then, everything changed...

Living with Parkinson's Disease means I am no longer the person I once was, and I know it, and it pisses me off! My body no longer listens to what my mind tells it to do. Those poignant, witty remarks that use to flow off my tongue during a conversation, are now silent. I can no longer complete the Sunday crossword puzzle or concentrate long enough to read my favorite authors. I walk slowly and sometimes stop unexpectedly as the connection from my brain to my legs disconnects. The wait for the reconnect seem endless as those around me ignore, avoid,or stare blatantly at the weirdo blocking the isle. I pretend not to care, but I do, I care a lot. I have lost my freedom. No longer able to drive myself to the mall or to visit friends, I have to depend on the kindness of friends and family.

I now suffer from memory loss and confusion, I endure incredible pain, I run into walls, trip over things, have an unsteady and wobbly gate which have brought accusations of drunkenness,(I do not drink), and I appear to be unhappy with everyone and everything. And yet, through all the frustration and unhappiness this disease brings to my life, I could never express enough the Love I feel for the man who manages to look past all the ugliness of this unrelenting disease and Love me anyway. For all the wonderful caregivers out there who feel unappreciated and overwhelmed, please know that We Love You. We may not be able to express our Love for You the way we, or you , would like but it's there and it's big and full of hugs, kisses, kind words, thank yous, smiles, hand holdings and the strength of our relationship. To "My Robert" who seems to love me unconditionally, I just want to say "Thank You" for always being here! You are my Hero!

Sometimes it takes something terrible to make you see what is really important.

19 Replies

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  • Thank you, JJ. Your prose is poetic. You said you could never express your love for your Robert, but you went and did just that. Beautifully. For all of us who value our heroes and sheroes.

  • Thank you, JJ. I relate well to the symptoms and a need for creative expression. I sang, played guitar, piano, and was into cooking, because my friends (well hopefully) are foodies. That was just a small portion of hobbies and expressions that were me. I’m on limited income but I have some ideas to creative new me.

    I am very happy that Robert has been by your side, as Dystonia-PD has been destroyed mine, but I want to keep hope going. The anger I held from my break-up still challenges me to the core, and particularly on special events like tonight. Thank you for sharing and Happy New Year, Gary

  • where do you live????

  • I have been living in Springfield, Missouri with Robert for a little over a year noe. Before that I lived in Stockton, Missouri, a beautiful Lake Community. Originally I am from Cincinnati, Ohio.

    Why do you ask?

  • I guess I was hoping that some of us lived close so we could meet. like a get together once a year or so..... I grew up in Rockford Illinois, ..........

  • "There's an app for that."

    Actually, there's a map.

    I created a google map for members of this group to mark their location(s) on. The map is at goo.gl/Wuzrw

    That's a short equivalent of the really long google maps URL. Full google URL is at the end of this post.

    The map has instructions on the left side for how to make the map editable and place your marker, but:

    1) as soon as you click "EDIT" the instructions disappear! So you want to copy them to somewhere first;

    or

    2) there's a character limit on that left-side text forced me to be extra concise. If editing a google map is unfamiliar to you then I suggest my more user friendly post* of 29 Nov 2001, about half way down the page of the following discussion. It has 10 steps, but they're short, and simple.

    * Search the web page for the string "Detailed instructions for marking your location or approximate-location"

    That conversation is at parkinsonsmovement.healthun...

    Ignore my initial post in that discussion -- this was a google maps learning experience for me, and that has some mistakes and unclear parts. That post half-way down the page is the good one.

    Google's URL for the map:

    maps.google.com/maps/ms?msi...

  • Ick. It looks like the ampersand in the google URL causes the site software to think that's the end of the URL. So, clicking that won'd work.

    The short URL earlier works.

    Trying to piece together the long URL doesn't work with Chrome. I'll skip the details on that and see if I can post just the necessary part of it here:

    maps.google.com/maps/ms?msid=212883005432087518123.0004b2976749fabc32c7f&msa=0&ll=40.178873,-104.0625&spn=142.592023,281.25

  • I too am very blessed with the husband I have had love me for over 32 years. Thank you for putting into words how I feel but have a difficult time expressing.

  • How lucky you are to have a husband who loves you that way. My husband died back in 1974. so I do live alone. I have four fabulous children, who do what they can, but the 3 boys live in california and my daughter does live a half hour away. but I do not want to be a drain on her at all.

    I am slower, it takes me longer to put on my clothes and socks etc. but I just have to plan ahead so I am not late .......

    I also am an artist. I build miniature rooms, one inch to a foot. very hard for me to do much of it anymore. I also make 3D pictures (paintings) and I also make individual personal gift cards. it is more difficult to do my caligraphy, so I rely on the computer. But I will continue doing what I can. I do the crossword puzzles as much as I can...........

    I am just so happy that I found all of you..........I have felt very alone, and had no one who really understands all of the changes going on.

    please everyone, stay in touch....I type so poorly now.....yikes.

    Happy new year and lets make it a gr8 year for all

    Jaynie

  • Jaynie,

    I try to paint on a regular basis, even if it is only for 15 minutes or so. Since I, We, have to depend on the connection between brain and body being strong, on the good days I always push myself. Robert always wants me to "take it easy",afraid that I will do too much and hurt myself. He understands my need to paint, write and bake but it scares him, not wanting me to do anything that might shorten my life. I need to live my life as fully as I can! I am so glad he tells me how he feels and I can talk to him about my diseases and all the crappy side effects and what they do to me!

    I really Love this man and I don't ever want to say goodbye...

    jupiterjane

  • where is everyone located???

    I am near Tucson, in Green Valley

  • Cornwall, England.

  • West Midlands UK

  • San Francisco, USA.

    My art form is peculiar: I write (or improvise) and then sing 10-line poems, usually in Spanish and in the Afro-cuban rumba idiom.

    It now hurts me to play percussion, and my hand tremble rockets up to the "frappé" setting when I perform. Parties crwded with people or stages packed with equipment challenge my mobility. But I am grateful, so grateful, that my modest talents and abilities appear to remain unaffected by this ridiculous condition.

    Best wishes to you all!

  • Oxford, UK.

  • Hello from western NY near Rochester . Jupiterjane thank you for sharing your love story I was divorced 16 yrs ago and diagnosed with PD 6 yrs ago--I recently met and moved in with a gentleman who accepts me as I am, wants to learn about PD---his health isn't the best and the retired nurse in me.....well lets say I feel my life has more purpose, my symptoms ----there are good and bad days but on the whole I am doing well. I am grateful for the 'gifts' that life throws my way unexpectantly and feeling loved and loving someone has had a positive affect on my PD----------I don't know how long it will last but I intend to enjoy life for as long as I can. God bless, Jupiterjane and site users let's have a wonderful 2012 and continue to share our stories Gail

  • Hello from western NY near Rochester . Jupiterjane thank you for sharing your love story I was divorced 16 yrs ago and diagnosed with PD 6 yrs ago--I recently met and moved in with a gentleman who accepts me as I am, wants to learn about PD---his health isn't the best and the retired nurse in me.....well lets say I feel my life has more purpose, my symptoms ----there are good and bad days but on the whole I am doing well. I am grateful for the 'gifts' that life throws my way unexpectantly and feeling loved and loving someone has had a positive affect on my PD----------I don't know how long it will last but I intend to enjoy life for as long as I can. God bless, Jupiterjane and site users let's have a wonderful 2012 and continue to share our stories Gail

  • Hi Cowmom,

    I have been a divorced Mom for many,many years. My marriage and its abuse at such a young age left me bitter, and closed off about Love. As far as I was concerned all men were "assholes and liar" and I was soo afraid of being hurrt again that I put up the biggest wall I could, and quietly led my life behind my brick wall.

    It took an enourmous amount of strength to open up my heart again. I just didn't want to fight 2 major debilitating diseases alone and I wanted to feel and experience true love. I found that in "My Robert"! That is a story for another time, but we just knew we were meant for each other!

    I'm very glad your heart is full now and I wish you many, many years of happiness with your husband!

    jupiterjane

  • You are very lucky to have Robert. My marriage was never happy, I left after 20 years, but had an open mind about a future relationship, however, they seemed to fit your description of how you thought men were!! I live alone, family don't live very close, but we are close in spirit, and email. I've just moved to a retirement village and am getting to know people here. The Arts play a big part in my life too, I do encaustic painting, using an iron to paint pictures with wax, and I love going to the theatre, especially musicals, I find both very therapeutic..

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