I am a Person

I hate this disease! It is unrelenting and so unfair! When I was first diagnosed I went home and read up on Parkinson's Disease and decided I did not want this disease. I told my doctor to "take it back"! I had just watched my son graduate from college and in my job I had accumulated quite a number of days off and was planning some trips. A new segment in my life was beginning and I was looking forward to doing exactly what I wanted to do! Instead the only trips I've been making are to the doctors, the drug store, where everybody "knows my name", and the grocery store, because you still gotta eat! I HATE THIS DISEASE! With each new Parkinson's symptom I develop, I wonder how long it will take me to die? But I'm already dead, at least that person I was for 47 years is, and I kind of liked her! I lose a little more of myself everyday and yet I strive for normalcy, for the invisibility that healthy people have. I don't want to be noticed, to be pointed at and whispered about, but the choices my life now offers me are far from normal, perhaps I will embrace the abnormalities that now make up the newly developing me. I still Hate the Disease!

"I am a Person"

Eyes that stare,

whispered comments,

children pointing

as adults pull them

close,sharp

objections to

their curiosity.

I wanted to shout,

"I am a person,

not a monster".

Raising my

head high,

I feel my body

begin to rumble,

an earthquake

of muscle

and nerve,

faulty messages

sent from

the brain.

My leg begins

its dance,

unable to

keep time.

A disjointed,

unrelenting,

twisting mass

of flesh.

Soon,

the arm

joins in

and the

practiced,

off key,

waltz of

Parkinson's

begins.

My head

bobbing,

I try to

stay calm

but the anger

builds quickly,

and all I want

is to be home,

away from all

the stupidity.

If only people

would stop

and think,

That could be me,

or my wife,

my sister, my Mom.

I was once whole,

a member of the

hustle and bustle world

But my life

has changed forever,

with the twitching

of a finger.

Jupiterjane

23 Replies

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  • very well put together .jupiterjane i feel the same way and its 4 yrs this march i was diagnoised . its like u were writing that about me . i hate it so much too. it takes a bit more every day .i pray for a cure for to end this disease that has taken so much from me already it even has my future planed out . all we can do is take it day by day . xxx

  • I agree totally

  • I am sorry to hear that, most of the people on this site are very optimistic and incouraging. Do you have family, children, someone for whom is worth to live your life the best you can?

  • KokoLu,

    I am generally a very optimistic person, but we all have those days when we feel like all we are doing is beating our heads against the wall. Writing poetry, diary entries, etc., helps me to purge the negativity. I write in the moment when the feelings overwhelm. Writing and painting are my coping skills. Thank you for caring though I appreciate it. Please read my last blog, which was my first, perhaps it will give you a better feeling about me!

    jupiterjane

  • Yes, we all have those days but I'm choosing to have less of them this year. I'm resolving to living everyday to its fullest---reading, exercise, and yes even travel. I am a person and I'm not going to let PD control me anymore. :o) Hang in there! It's good to have a site like this to share feelings because we are all somewhere on that journey with you.

  • I read your post and thought: OMG! I am this person! I too was a different person with goals that have been altered. Being diagnosed with Parkinson's creates situations where we become sensitive to how we look and feel.Things that I took for granted became little challenges. I fret over how PD effects my relationship with my friends and family. We all have these things in common. It it is difficult for "normal" people to understand how The Parkinson's Lifestyle has reshaped our lives. After reading your post I come away with the feeling that we all share common hopes and fears. I'm glad that we can all get together on this site and express our thoughts without being afraid to bear our souls.

  • I say to Parkinsons "Bring it on PD how dare you invade my life, you dont scare me!" It will not rule my life, I will rule it!!

    Andy xx

  • YOu look BEAUtiFUL to me, Jupiter Jane! Everything you write is articulate, heartfelt, informed, and interesting. I can't see your symptoms, I can't see your secret thoughts. I can only see what you choose to share with us, and I am grateful for it.

    My PD symptoms are still pretty mild, so I can do almost everything, and I get only a few looks when I have my high speed tremors or my slow-motion episodes, or my Quasimodo imitation. But my dad's condition is much more advanced. So I know very well that in the later stages we have limitations and we attract unwanted, sometimes demeaning, attention. But I also know that my dad is still there, inside. And he remains happy and deeply, passionately involved in life.

    JJ, years ago I worked in a third world country for a peer support group for people with spinal cord injuries. When I first met these folks I was all sorry for them, it seemed so tragic. One of the women, a paraplegic since 17, told me "This is not a tragedy, it's just a major inconvenience." That was over 30 years ago, but I never forgot it.

    She also told me that in the U.S. disabled people sometime refer to the non-disabled as "tabbies", T.A.B. standing for "temporarily able bodied". the implication being that sooner or later everybody experiences temporary or permanent disability. The way I put it when I talk to people about PD is "Everybody gets something". They spun the Wheel of Fortune and this is what we got.

    I just hope that PD is all I get! When I read around on this site I see people who are battling cancer too, and who knows what else! I see the young onsets, who have many layers of challenges (career, young children, potentially shortened lifespan). I see people who are obliged to keep working, or who have inadequate health insurance, or none at all. I see people who have no partner, no loved ones nearby, no social network. When I start to feel sorry for myself it quickly occurs to me (and I'm not proud of this) whoa, it could be way worse.

    So, comrade mine, if it helps you "purge the negativity" by posting here, well, you've come to the right place. We hear you. We have been there. And like you, we don't get stuck there. We lurch forward, drooling and twitching maybe, but forward. And, somehow, grateful to be alive.

  • Thank You for your understanding words. I had already decided if you all could not accept my negative feelings along with the positives one ,I could not be here. My poetry and my Art speak for me.

    Jupiterjane

  • JJ ( as you have become known :) ) your poetry is a great gift that you give to us all, much appreciated, thank you

  • So So True, love the honesty of what you say, thanks

  • Lovely words thankyou for posting

    Andy x

  • In the anger department have a look at Kathlene's post in the thread "Too young for Parkinson's Disease". I found it very compelling emotionally even though I don't really go there myself. ((((((My secret negative feeling is fear.))))))

  • I am sure that everyone can relate to your feelings. I am able to carry on life as normal as possible. Some would say that I was never normal! But I can totally relate to how you feel as my cousin had a very rare form of PD and looked 'different'. I saw a lot of her, which was particularly difficult when I was diagnosed. But she was always in there somewhere and fought to the end. She is my inspiration and if I can be half as brave as she was then I will be satisfied. RIP Hilary.

  • Hi Court,

    I have a favorite Aunt who has Parkinson's and she also looks "different" than I. To me that fact that everyone experiences Parkinson's in different ways is the scariest thing about the disease. Not knowing in which direction your progression is going. There is really no agenda, no plan for winning this battle, you just have to figure it out along the way, and hopefully you have a good Doctor who can make you as comfortable and as pain free as possible for the duration of this War. The scars can be painful and deep, not only for you but for your caretaker and family as well.

    A pleasure to meet you Court.

    Jupiterjane

  • Thanks for your lovely comments. A pleasure to meet you as well.I am lucky in that my progression is reasonably slow at the moment. I am also blessed to have two gorgeous grandaughters who I am still able to look after when needed. Long may this continue. I just take one day at a time, both good and not so good.You are right in that the not knowing is really frightening. There are so many forms of this cruel disease, some very extreme. we can only live in hope. I will watch for your posts with interest.

  • Just when my life became perfect along came PD. Why me???????

    Court, I agree with you wholeheartedly. It stinks!!!!!

  • My husband has PD. We've only been married six years but dated for 11 years before marrying. I am so angry that this disease has robbed us of so many of the things we wanted to do in retirement. I am pissed that now I am taking care of him instead of him taking care of us. I am pissed that he gets upset when I have to pay bills because of his dementia. I want my husband back, my strong, brilliant, in-control husband! I don't want to be in control. I don't want to be the man-of-the-house. I don't want to be responsible for all of this.

  • I wish I could put all the right words together to let you know that what you are feeling is okay. We were not born to be Saints, we can never say or do all the right things. We are flawed. We cannot possibly feel sad and upset all the time without it having a negative effect on our lives. You know, I don't know where your Husband is with this disease and as you know Parkinson's affects us all in different ways, but I can tell you that it tears away at you. It strips you of the person you worked your whole life to become and you become a stranger to yourself and everyone that has ever known you. And then you have to deal with all the physical stuff too.

    You are a wonderful person PdAdel. I admire you for having the strength to stay with your husband while he blindly staggers down this road, but you must NEVER, NEVER, forget about you! You must find something that you are passionate about and then go out and do it. Take art classes, or take a trip with friends, go to a movie, or spend the day shopping or visiting museums or libraries. If you need to find someone to stay with your husband while you tend to yourself ,then do it. I know I would want "My Robert" to be happy. You are a wonderful wife! Don't you ever forget it!

    Jupiterjane

  • Wow. The emotion is raw, the poetry is painful, but heartfelt. I was diagnosed in 2000 at 49, and went through several years of anger, frustration, fear and sadness. I planned my "exit" for when things got so bad. I wasn't going to live with this disease and make my husband (lover, friend) a caretaker. I did not want my children to have to figure out what to do about Mom when Dad could no longer take care of me. Then I changed my mind. I decided not to give in, or give up. I decided to do everything in my power to make my life livable. I decided not to be defined by this disease. I am not saying it is all rosy, but changing my focus and energy to what I can do instead if what has been lost has given me a new purpose and outlook. I am not a Pollyanna, I know what I face and the steady march of this disease is unrelenting. But I have changed, and by changing my mind, it has freed me in a way to live my life. I am not minimizing what PD puts us through, it is hell. But I am ready to do battle with the devil.

  • Amen Sister, Amen!

  • There is a lot of serious venting going on in this blog.

  • In this unbelievable, open, gut wrenching world of "feelings" I now find myself in is, a release, the release, for me, of me, a marker left on this world that shows the essence of my soul. A little piece of "Janes Garden" to live on! I am a neurotic, self obsessed women who wants nothing more then to be swallowed up by life and love...and to be remembered.

    "He'll Remember Me"

    Oh! He'll remember me!

    He's definitely going

    to remember me!

    I have left

    pieces of me

    in all parts

    of his life.

    From the excitement

    of our first meeting

    to the butterflies

    we still get when

    we are alone

    together at the

    end of the day.

    Oh! He's gonna

    remember me!

    The supple kisses,

    soft pats on the

    bottom,

    a deliberately placed

    nibble in the hallow

    of the neck just

    below the ear.

    He'll remember me!

    There are the books

    I've read and the

    journals I've filled

    in easy reach throughout

    the house.

    My thoughts and feelings

    among his T-shirts,

    lap-top and shoes.

    He's gonna remember me!

    Every time he closes

    a cabinet door,

    or tightens the lid

    on the toothpaste,

    He'll remember me!

    Down inside the couch

    he'll find my

    hair barrette and

    about a million pens,

    (I can't ever find a pen),

    an old grocery list,

    and a few lines to a poem.

    Yes, Yes, He's definitely

    gonna remember me!

    Wedged way in the back

    of the closet He'll

    find one shoe,

    that one shoe I spent

    30 minutes looking for

    because I had to wear

    THOSE shoes out on our date.

    He's going to remember me-

    so much more of me

    than I'll ever know.

    He'll laugh out loud

    at some joke he remembers

    I once told him and

    he'll feel me slip my

    hand in his,

    so sure he'll be

    that I'm right there

    beside him that

    He'll turn his head

    to look but find

    I'm just not there.

    The scent of

    my perfume lingers

    in the air,

    He stands so still,

    breathing in lightly

    the smell of me,

    so afraid to move,

    to look around

    to find no one

    is there.

    He's gonna remember me,

    He's definitely gonna

    remember me!

    May each memory of me

    He encounter throughout

    the rest of His life

    bring the sweetest smile

    to his lips, and the

    happiest thoughts to mind.

    He's gonna remember me,

    He's definitely gonna

    remember me!

    Jupiterjane

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