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Topic Screaming on the inside Go to previous topic Go to next topic Go to higher level

By olpilot On 2014.04.23 03:35
I'm sorry for not getting back with you all sooner but like most this has been the mother of winters. So much going on so much staying the same. I feel my Parkinson's has been progressing, Shelleys hands aren't doing that well. My woodworking has slowed to a crawl and to those I have the biggest connection with I've let down.

I found out at some point in all this I had a "minor" stroke and on my brain MRI things are stable, what ever the hell that means. The Parkinson's meds aren't doing all that much I think and I believe also my dr thinks it is more. He mentioned MSA or multiple system atrophy. It is as scary as it sounds but only time will tell. Like with all this its time, waiting for another shoe to drop.

On one of the web sites I go to there is a fair amount of depression going on, which brings me to my point. I have been screaming out at something that has no interest in me or any other sick person....my disease. I do it not because it does any good but because I need a place to just scream. A Internet friend apologized to night for here crying out. Maybe afraid she thought we were thinking she wanted sympathy. I know thats not the case. We all with this need to cry out once in a while. It can only be done with those who are living it or living with it. It isn't crying or looking for sympathy it is just being who we are.

When I was a kid I saw a Vincent Price movir called " The Tingler", a movie that scsred the hell out of me. About a guy that believed if we couldn't scream we couldn't let go of fear and it would kill us. He had devided to kill his mute wife that way. She couldn't scream so this part of her a part in her spine called the tingler would grow so strong it would kill her. Simply because she could not scream, not let out the fear.

I have discovered that it's true, you have to have a placeto just cry out every once and again. I have never played the "why me" card. I have just accepted that it is what it is. I certainly can't get mad at " God", he has atleast on universe to run with maybe trillions of life form. But that night I really had no place to yell. Shit. I can't yell at my wife, not her fault,although sometimes I fear I might take it out on her I really try not too. She is dealing with something I need to be there for her with.

My main thought is that we all need a place to cry out to, even if no one appears to be listening we have to try. We all have pain, do we shout or do we just let it consume us. I have never been good at turning to friends, but then why have them. Even if they are only a name on a screen. On that I think I need that now more than ever. I do have some great friends that I will be seeing in the next couple of months.

It is time to go and see them, our land sailer and dingy are ready.

By ResistanceFutil On 2014.04.23 06:49
Stroke, MSA, Parkinsons, hellish winter....and I was screaming on the inside because my husband moved my phone charger. My pettiness versus your grand articulation.

My respect and well wishes to you, sir.

By JulieB On 2014.04.23 08:38
Olpilot, thank you for saying so eloquently what every PWP and their loved ones needed to be reminded of. You have my prayers and admiration. xoxo

By carman96 On 2014.04.23 09:14
Steve, sorry that your wife's hands are not better. Such a cruel twist of fate.
Minor stroke, MSA, etc, so easy for the doctors to throw those words at us, yet so hard for us to hear.
I guess we should all have a place to scream, even if it is silent and only on the internet.
You have lots of friends here who will listen, so scream away.

By mylove On 2014.04.23 09:42
I do believe that this an important part of why we have this forum. Partly for info sharing, but equally as important, as a room for crying out in a place where no one will judge or chastise you for it. No one here should ever weigh their grief or circumstances against anyone else's. Who are we to weigh the merit of anyone else's pain?

The thought "I have no right to hurt because others have it worse than me" has eaten up my insides for years. It's destructive. We all should realize that our own pain is valid, it's incomparable to anyone else's, and if we hold it inside it will destroy us. We are here to hear you, caregiver and PWP alike, and we understand.

By Witsend On 2014.04.23 10:05
I'm so sorry for all of your problems, olpilot. Scream as much as you want to and need to. Haven't thought about "The Tingler" in years but you are right - it is so relevant for us here, it really IS scary! I've experienced so many strange things if I don't scream - including endless migraines, which I am suffering now. I'm messing with my medication trying to "fix" it because God forbid I should go to a doctor for myself! Today I'll make an appointment for myself and hope I don't just sit in the neurologist's office and cry - which I have done in the past, and it's very embarrassing as well as being completely non-productive.

Anyway, what I wanted to say is that if we don't scream, even virtually on the internet, the screams come out sideways in all sorts of ways. Screams WILL be heard - somehow. Love and hugs to all.

Joni

By jcoff012 On 2014.04.23 12:50
Bless you, Steve and bless your dear wife. We all feel your love and your sadness...and anger...at PD, life...But, through it all, we all marvel and appreciate your kindness and your articulate posts...May you see a better summer on the horizon. Bless your heart, scream ANYtime...we will listen...Hugs, Jane

By umajane On 2014.04.23 13:04
Sometimes I want to scream on this forum too but feel so many others have it worse. As "mylove" said some have it worse some better it is just a matter of degree or time. So sad for everyone here and so happy we have each other.
Plus there are times when we have no sleep etc. that everything feels worse and the next day could be bright and sunny and just a little bit better....so strange how each day is so very different.

By jaxrock On 2014.04.23 13:10
So, Monday I found out that my husband also has Lewy Body Dementia on top of his pd....
I felt like screaming....we drove home for the dr.'s office, I didn't say much..My husband didn't know.
I thought I was ok.........NO...while I was driving around doing errands, not only did I scream, but I cried and cried and cried.
All of you suffering from PD, and all of us caregivers, have a perfect right to scream and cry....it doesn't change things, but, momentarily makes us feel a bit better. It also helps to share our pain with others.
Hugs to all

By jcoff012 On 2014.04.23 14:16
I know I posted this before, but this is the perfect time to repeat it...While I was under treatment for my own cancer, we found out our only son was dx with testicular cancer...When I kept my appointment for a checkup, my oncologist said, "Jane, I advise ALL of my patients to get in the car, drive to the ocean *we lived less than a mile then*, and SCREAM, and SCREAM until you are exhausted." You will feel better, able to face what is coming. You cannot change the future, so take the time to release tension...it will help!"

So, see? There is "scientific' proof :-0 that screaming helps...Hugs, Jane (I did it several times over recurrences, etc...it DOES help!)

By parkinit On 2014.04.27 23:18
You are so right and I'm so happy this is one place we can truly all "let our hair down." No one should worry about venting because we are all reading the same book, but are just on different pages.


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