I want out
I want out
I can’t breathe
Life's piling on, It’s heavy
Too heavy now
For me
I’m drowning
Get me out t t t ttt
Get me out!
I'm exhausted
physically unable
to carry my burden
emotionally drained, the tears
falling way too easily
or not at at all.
I am in desperate need
of relief
from this never ending
pain, pain
and confusion,
the swaying, the
falling down,
the looks, the
stares,
the embarrassment,
the pain,
the pain.
I want out!
Get me out!
jupiterjane
Wonderful description of despair of PD is this a cry for help, if so you need help, then please try to get some. If an expression of how you feel I am sure we all are with you and wish you as much support as we can xx
HI JANE
I AGREE IWHT CARRIGAN ABOVE
YOU DO NEED SOME HELP
REAHC OUT AND IET WILL BE THERE FOR YOU
DO NOT GIVE UP NOW
LOL jIll
Oh Jane! Your cry for help has not fallen on deaf ears. We are all here to help and encourage as we best we can. I, fortunately, am not in that much pain yet, but the way you describe your feelings brings tears to my eyes. You so beautifully express yourself, it is hard to believe you are hurting so badly, and are still able to write such marvelous poetry. You are always in my thoughts and prayers, sending you warm wishes and willing the pain to leave your body. God bless.
XO Jenny
Jane, I feel your pain literally and understand where you are coming from. I fell January 16th catching my right hand in the restroom door. Needless to say my hand and arm have looked and felt like hell since. Then I got a sinus infection followed by shingles in of all places my right buttock down to the back of the knee (I had a shingles shot two years ago). OMG it has been the worst pain I have ever endured. And lastly I fell again on February 26th and partially tore two ligaments, a small break and a bad sprain to my left ankle. Trust me I have cried like you and then I remember that I have my Tommy, like your Robert, and know things will be okay again. Blessings, prayers and hugs coming your way. Terri
Thanks Terri, I appreciate the commiserating. Sometimes I just need to say out loud those damn, nasty thought inside my head!
hey you........
Getting it out of your system through Poetry I think is very good and therapeutic.
Hope you feel a litrle more relieved soon best wishes
Your despair certainly hits home. PD is an exhausting disease. Its toll on our emotional strength as well as our physical strength is, so often, overwhelming. When I was diagnosed with PD in 2002, I was somewhat symptomless and the meds certainly did their job to obscure from friends and family the obvious signs of PD. For 10 years I breezed through my life as if PD was a secret lover. It consumed my daily thoughts, but I spoke nothing of it. No one believed me anyway. And then early in 2012 all that changed and suddenly the symptoms were creeping to the surface. I began to fall for no reason. I would get stuck in doorways. I would shuffle walk when navigating crowded passages. The meds began to take their toll as well - the constant moving, wreathing, twisting, etc. Many friends started to drift away because they could not tolerate the oddness. I became despondent and like you, ready for the end. But only God decides such things, and I long ago gave over to Him those important decisions so that I could concentrate on the quality of life I, alone, could provide myself,. I was once strong, and no longer am. I was once a dancer, and no longer can. But I have loved and been loved in return. TAnd the music still beats within my heart. Strength can be measured in many different ways. Tomorrow, the cross you bear will be light as a cloud and you will realise how strong, worthy, and special you are.
Jane, your poetry is wonderfuil. I so understand what you are feeling. Some days are better, some are worse. Do you mind me asking.... where is your pain? Please get some help if you can. Prayers to you.
All these comments are very touching. I pray for each of us to receive the grace to live each day free of discouragement and dispair.
I understand I am in pain because of the tremblements excessive I had in October. I have a sore on m leg like an ulcer but it is not an ulcer but the pain has been untollerable at times. I was in Hospital three times October for my pump Apokinon to be regulated and to come off my other meds. In hospital again in November because of the sore enorme and very painfull on my leg. only to be sent home as they said I h\d a blocked artery and needed an operation for that. I entered Hospital for a third time only to discover after the operation I didn`t have a blockage after all. When I came home my Husband was taken in Hospital as he hadn`t been eating properly and his CARBON monoxide level in his blood had risen He had been on Oxygen for more than 4yrs and they said at the hospital he was in the last stage of his illness and consequently he died in a nursing home on 5th Feb, so I am trying to get my life back on track buit it is not easy. I hope you feel better about your pain soon Jane. Mine is getting a lot less than it was
Your poetry is a great way of expressing your feelings. Lots of hugs and keep writing. Have you tried to express your thoughts and feelings through other art forms. May the Force be with You.
As with most of us with Parkinson's Disease I also have a secondary diagnosis. I have a rare neuromuscular disease called Cramp Fasciculation Syndrome which makes my nerves and muscles spark against each other at all times causing me to have severe muscle cramping throughout my body. At first it wasn't so bad but it has since esculated and I am in constant pain from the cramping. i know it doesn't sound like much but imagine a series of oh! say a charlie horse that starts in your big toe goes up the inside of you leg behind your knee and then slams into your groin X's 10 and happening all over the body. As the muscle relaxers wear off , my body begins to spasm and tighten until I become stiff and movement is limited. My new neurogist is thrilled with this disease because it is rare and he has never seen it before. He is planning all kinds of experimental drugs and treatments for me. I went through all this 5 years ago when I was first diagnosed and treated by a neuromuscular doctor in St. Louis. We spent over a year doing the guinea pig dance, and I do not want to go the road again. So along with the muscle pain, the PD swaying and falling my frustration level with insensitive doctors is, well it''s just overwhelming and so... blah, blah, blah
Do you live anywhere near New Hampshire? My dad is a licensed massage therapist specializing in working with people who have Parkinson's. My mom has Parkinson's and also has problems with cramping - he is able to relieve many of her symptoms through massage techniques. It may be that he can help you as well? If you are interested in at least speaking with him if you are too far away, I will be happy to share his contact information with you.
Robin Felch
I live in Missouri and have tried massage therapy, unfortunately with this disease any stimlization of the muscle just makes it worse. I describe my on-going muscle pain like this; today yougot up and ran a mile ,no prep, never ran a day in your life. You will be nursing sore,tender,cramping angry muscle for a while but it never goes away for me, it just contnues to worsen
Sorry to hear this. I know that my mom suffers terribly from the cramping, and for her, the technique that my dad uses seems to help.
I await in terror the time when I have taken all I shall. I pray I will have the courage to do what I must.
I thought I had a problem, till I read all the comments above. .All of us can take a moment
to reflect that there is hope in solving the PD.
Blah, blah, blah, yada, yada, yada...I wanted to kill myself when I was in the 5th grade and I stuttered in front of an assembly of students, teachers, and all the rest of those bastards who laughed at me. But you know what? I didn't. It's many decades later and I love my girlfriend, I love writing, i painted and sculpted for many years. I enjoy certain people and they enjoy me. I laugh and cry. I love each second of life. I do have one recomendation for you. Join a Qi Gong class. Get away from those nasty thoughts you have for an hour a day..
As for our PD, fuck it. It is what it is.
Gary
I wish i could be next to you and wrap my arms around you and shed a few tears together and find strength within ourselves!
It takes great great determination to get off the slippery slope. I've been on it with one injury after another and the PD progresses with each one. That's it! I'm having fun, PD, don't try to stop me 
i take this for what it is, a form of release to the pain and, we all experience in those down times.... nothing mor nothing less............... minnie ruth
I odn't know where this PD will eventully take me, but from where i sit I have 2 choices: I can feel sorry for myselff and wish i were dead or I can accept my plight in life and have a productive day. i'll take door #2. I never feel sorry for myself. Someone asked me recently how i became so brave. That threw me because i never thought of myself as brave. I thought for a while and said, It seems to me that being brave means putting one foot in front of the other," and always trying to do the right thing, Think of PD as an inconvenience, and not an illness. Remember, one foot in front of the other and you'll look forward to today. Gary
Jane. I've gone thru bouts of despair lately and I know how you feel. It seems so unfair. I wish that we all could find peace. My thoughts are with you. Try to have a nice day. -Joe.
I wrote 2 comments. they were not the usual 'Oh poor me' comments and now they are gone.
What gives?
ignore the above. my comments are back.
I do not want to kill myself! I worked very hard to get pain meds and a muscle relaxer and I want them to work when I need them. Need some quality of life here, folks! But let me tell you, when the time come and I see the light, I am hiking up my skirt and running as fast as I can toward the light, cause I don't want them leaving without me!!
I'll be racing toward that light too! :o)
As always Jane, I feel the pain of your words....of course not the same pain, but I go through my own "hell".....Prayers going out to you....
CJ
Such fire and spirit and compassion all in these posts! Keep it up, don't let our spirits die! We need to hear from everyone because everyone is important. Love the comment s about PD. "F--k it, it is what it is" and "I am hiking up my skirt and running......don't want them leaving without me!"
Obviously PD manifests for each of us uniquely, some of us are so lucky we get it all, pain, cramping, depression, slow freezing, right away. While some of us must wait for that treat. We all suffer, it is how we react to it that is important...
My grandchild just woke up and wants granpancakes so I gotta go but
I love you all!!!!!!!!!!!!!!
I know how you feel, I'm fighting the dreaded depression too. I'm a fighter but his disease with no hope for a cure or better medicine in the near future doesn't do much to support a POSITIVE ATTITUDE. The winters in North Dakota are brutal. I have been a recluse since October and sedentary. I have projects but all the movement i get when my med's are going off .The. medicine controls everything. I have no control as to when my medicine is wearing off and that alone has stranded me in stores being unable to walk, no place to sit down, hanging onto a cart looking like .I don't know what, flailing.uncontrollably, sweating, wondering if I should just sit on the floor but knowing it would be lying on the floor....in the middle of Walmart. I didn't think 'embarrassment" or that people were staring at me and walking around me not asking if they could help. My medicine finally kicked in enough to get through the checkout. That's cured me from shopping for a while.
You hang in there, don't worry about the depression. You should be depressed but it can be controlled with medicine and a friends ear. I fall down all the time, with a walker, walking stick...nothing seems to help but I keep on. Put you inner self in gear and get your life going again. You're a,live!!
OMG I too have been in the middle of shopping at WalMart whent he meds wore off, the confusion, the sweating, the incredible urge to just sink to the cool tile floor and lie there until, until, well unti I felt better I guess!
your words are exactly accurate in describing this painful horrible mean disease the sometimes i just want to wake up all better and not be slow embarrassed in pain off balance confused and upset
OMG I remember during my early years I used to frantically scour the web looking for aa diagnosis other than PD, something that would go away with meds, was also in denial mode for a loonnnnnng time till i had to accept the reality...and boy was that difficult...and yes I have had episodes of the body freeze usually on the right side where it feels like a paralytic stroke..it has come down after I had DBS...if it helps..my version of kicking Mr.Parkie out Hang in there...love n huggggsss
I totally know where u r coming from! We treat animals with more dignity than people with PD in Australia!
my parkinsons was diagnosed in 2008 . and i have been on carbodopa-levodopa since . i did start out with another medication, it was bad.
Reaching Out
I don't want to go
Falling out of bed
