Rejected!

[Stevewithpsp]

Why does this site constantly dump posts I have labored over (sometimes for over an hour) arbitrarily? It's hard enough to think and write without this extreme aggravation. I am almost homicidally angry and I forsee buying a new phone when I crush this one.

[honjen43]

Hi Steve!

Not sure when you found this site - but Welcome!

Have just read your fascinating bio. Guess you have more to be angry about than just losing your post! But that would be the last straw!

Happens to me too! Specially if I spend too long on the post. Or I hit part of the screen and it is posted before I have finished! However big the phone is, my fingers seem to be still too big!

Don't stop posting just because it is not easy! That is not good for any of us, whatever is wrong with us!! Keep calm and carry on!!!! And laugh! It is so good for us all and defuses so many bad situations if done right!

Better luck with your next post!

Take care.

Jen xxx

[Stevewithpsp in reply to honjen43]

Thanks. These mental meltdowns I have over relatively minor problems worry and embarrass me. I found this community about ten days ago. I truly feel as challenged by my loss of emotional control as I do by the physical challenges. Thanks for the encouragement and I will try counting to ten (thousand) before firing off a quick whiny post. Maybe my phone has PSP.

Steve

[honjen43 in reply to Stevewithpsp]

Never count as far as 10,000!! Join the others who rant and rave here! It is good for the soul and we all understand! I have no experience with PSP, except what I have learned here. Others will understand your outburst from experience!! And there are other PSP affected folk posting too.

Regards

Jen xxx

[Stevewithpsp in reply to honjen43]

TY

Steve

[easterncedar]

You are not the only one with that problem. Being of a certain age and resistant to technology, I don't know how anyone does anything on a phone. I still miss the rotary dial. It made such a satisfactory sound.

Hang in there Steve, please. We want to hear from you!

[Stevewithpsp in reply to easterncedar]

Dear EC... I'm not giving up; I'm just trying to ride out the wave of madness that hit me late last week. Don't worry, I'm not dead yet.

Best wishes to you both,

Steve

[Cuttercat]

Please keep posting. In the time I have seen them they have helped so much. You are a valuable friend and comrade. This disease is so awful and so unpredictable.

Cuttercat

[Stevewithpsp in reply to Cuttercat]

Cuttercat - thanks for the encouragement and kind words. I consider everyone in this community a valued friend and comrade. It's nice of you to say that because it is why I participate. I'm just struggling through a bad patch right now and I can't deal with the emotional side of things sometimes. I'm better today than yesterday, and yesterday was better than Wednesday. I'm not going anywhere anytime soon, I hope. Love and peace,

Steve

[Marie_14]

Steve that has just happened to me...again! Don't know why it happens but it is so annoying!

Take care and relax! Just remember this happens to the rest of us too. Grrr...

Marie

[Stevewithpsp in reply to Marie_14]

I know dear. I have ground most of the enamel off the tops of my teeth, so believe me, I know.

Steve

[ChristianEd58]

Steve,

Most apps and sites used for posts in forums like this one and the US-based curePSP.org forum have a built-in time-out for posting. Your best option is to compose your draft in a stand-alone text app (like Notepad in Windows 7, or like MS Word [using the Save As .txt format], and other such apps), =Save= the resulting file , and then just copy and Paste the finished draft into the POST or REPLY box in the forum's page. You would even have time to do a spell check before posting, if you wish!

That way, you won't have to waste inordinate time pecking away on your smartphone, or worry about incoming calls or other time-consuming delays!

ChristianEd58

[Stevewithpsp in reply to ChristianEd58]

I wish I wasn't such a Luddite when it comes to technology, but it's way too late for me to understand, much less master what you described in your reply.

It's a large gap in my intellectual make-up which predates It, unfortunately. In any event. I am a stream of conscience writer who never edits what he writes. I will be getting my laptop back from my nephew at Easter, and maybe that will help.

Thanks for the assistance brother.

Steve

[Kevin_1]

Are you in for a joint phonicide?

Been there!

I now end to type into a word document and cut and paste.

Good to see you here and I look forward to more of your thought provoking posts.

And what should we call someone with PSP... My Liz hates the word sufferer.

Best to you

Kevin

[Stevewithpsp in reply to Kevin_1]

Kevin:

Name the time and place. Hah. Thanks for the compliments because they make me feel less like a drama queen.

As for labels, I suggest fighter (stolen from someone else whose name escapes me), warrior, or soldier since all of us are in the fight of our lives. Anything but victim or sufferer although both are appropriate.

Good to hear from you. My best to you and Liz. I'm glad you have each other as you go forward. I am so lonely at times I believe my shattered heart may be the ultimate engineer of my inevitable demise. Peace.

Steve

[Kevin_1 in reply to Stevewithpsp]

Hi Steve

You write very evocatively. Great!

Yes, it is warfare.

Severe illness is incredibly isolating. Studies show that friends fall away like autumn leaves when someone falls chronically ill.

Reading your post further down. Why not post a chunk and then reply to that with the next chunk and so on?

It would be good to hear more from you and you will make friends here I am sure.

Best to you

Warmly

Kevin

[Stevewithpsp in reply to Kevin_1]

Kevin

Thanks for your kind words. Once I get my mental equilibrium back I will try to be as active as possible. I consider everyone here a friend and a valuable resource in my daily struggle.

Best regards to you and Liz,

Steve

[ChristianEd58]

Steve,

May I ask how old you were when a doctor diagnosed you with PSP? And the first symptoms that signaled something was wrong were several months earlier?

And yes, I've been concerned about the popularity of, and dependency on, keyboard-less technology in an age of growing need for good and reliable interactive online healthcare support. If only you had an old BlackBerry...<smile>

I keep assuming everybody is an old-timer like me, with at least an old laptop lying around....but I know better, so I will punt...somebody else here may have a recipe that works. I know there are wp apps for phones and op systems out there, but how to hold a draft in memory while logging onto the forum site and designating a topic and then pasting your post into place from there sounds a bit above my IQ scale. I'll be listening to, er, reading the responses.<smile>

ChristianEd58

[Stevewithpsp in reply to ChristianEd58]

I have had a reply I have been working on for two hours. Now that I have finished weeping I know I don't have the strength to recreate it although it contained what I consider the most important information I've ever tried to post on this site. For now I can only say I was diagnosed October 8, 2016, and that my first symptoms may have begun as far back as January 1, 2005. Best stop now before they strap me to my bed. My poor nurse and two sides came running when they heard my howls of anguish.

Bloodied but unbowed, I remain your friend

Steve

[Stevewithpsp in reply to Stevewithpsp]

By the way, I was fifty-six when my enemy was first identified by Dr. Freiberg.

Steve