Post-polio syndrome, lots of pain & weakness

Hi- OK then, Richard. Thanks for the note. Friends, Kori

HEY GUYS…ME AGAIN.

I KNOW…YOU MUST BE SICK OF THIS “CHATTY KATHY” BUT SOMETIMES, I GUESS LIKE OTHERS, I FINALLY OPEN UP. USUALLY I DON’T. I TEND TO SEE MANY MORE PEOPLE MUCH WORSE THAN ME SO WHEN I DO COMPLAIN OR SPEAK OUT, I GUESS I FINALLY GET TO A POINT THAT I REALLY NEED TO JUST SAY WHAT I FEEL.

AND HEY KORI, YOU AND ME THE ONLY LATE NIGHTERS??? LOL OR AM I THE LATE NIGHTER AND IT’S JUST DIFFERENT TIME ZONES???LOL

WELL ANYWAYSSS…ONE OF MY STRONG FEELINGS HAS BEEN SPREAD THE WORD. AND WE ALL KNOW THAT THE ONLY WAY, THESE DAYS, TO SPREAD THE WORD IS THROUGH THE MEDIA. I REALLY FEEL THAT OUT THERE IN THE PPS WORLD ARE PEOPLE WHO HAVE WORKED FOR YEARS IN MARKETING, MEDIA, ADVERTISING, ENDOWMENTS, ETC. MAYBE LEGS STOPPED WORKING BUT OUR BRAINS DIDNT. MAYBE WE CANT WORK 8 HOURS A DAY AT OUR OLD JOBS…AND LORD KNOWS MANY OF US ARE RETIRED…BUT OUR BRAINS ARENT DEAD. AND I KNOW FROM THE EARNESTNESS OF YOUR POSTS THAT YOU WANT TO KNOW…YOU NEED TO KNOW…YOU WISH THERE WAS MORE OUT THERE AND YOU WISH IT WAS EASIER TO FIND. WHY CAN’T WE JOIN AND MAKE SOMETHING HAPPEN. I MEAN MORE THAN THIS WEBSITE (GRANTED ITS A GREAT THING THIS PERSON HAS SET UP FOR ALL ILLNESSES AND DISEASES, ETC) BUT IM TALKING ABOUT PPS AND THATS ALL.

WHY CAN’T WE FIND PEOPLE WHO MIGHT BE ABLE TO GET A PPS SITUATION ON A TV SHOW? FOR EXAMPLE…SINCE THE FIRST DAY I SAW THE SHOW “HOUSE” I FELT THAT A GREAT PLOT LINE WOULD BE FOR A RECURRING PERSON TO SHOW UP IN THE CLINIC (THAT DR. HOUSE HATES TO WORK IN) BUT THAT PERSON IS PPS…AND HAS A BEVY OF SYMPTOMS EACH TIME THEY COME IN…ONLY TO EVENTUALLY END UP BEING A PPS PERSON. DOES ANYONE ELSE SEE THIS, OR IS IT JUST ME??? WHAT ABOUT BONES…OR THE NEW SHOW…PRIVATE PRACTICE. EVEN E.R. WAS A GREAT OPPORTUNITY FOR A PATIENT COMING IN AND NOT FITTING THE NORMAL E.R. PROFILES. OK…YOU MIGHT THINK ME CRAZY BUT DOES ANYONE ELSE SEE WHAT I AM SAYING???

IS THERE ANYONE OUT THERE THAT CAN GET TO THE MEDIA TO SPREAD OUR INFO? ANYONE OUT THERE WITH A HOOK INTO THE “HOLLYWOOD” MENTALITY? ANYONE OUT THERE WHO KNOWS HOW TO MAKE THIS KIND OF THING SPREAD TO THE PUBLIC? I’M NOT THE GREATEST MIND, BUT I KNOW THERE ARE SOME OUT THERE. COME ON FOLKS…YOU WORKED ALL YOUR LIFE AND DID GREAT THINGS…WHY ACCEPT THAT YOU ARE USELESS NOW? USE WHAT YOU STILL GOT, EVEN IF YOU HAVE TO DO IT FROM A WHEELCHAIR.

I SAY…WE ARE NOT DEAD…BUT I WILL SAY THIS…PART OF SAYS WHO CARES ABOUT SPREADING THE WORD TO OTHER COUNTRIE ABOUT POLIO VACCINE WHEN WE ARE THE ONES WHO SUFFERED FROM THE REAL IGNORANCE OF THE TIMES…BUT…THINK ABOUT IT…IF OUR LIVES WILL MEAN ANYTHING, THAT PERSON WHO NOW HAS POLIO WILL KNOW HOW TO LIVE A BETTER LIFE KNOWING WHAT IS TO COME. AND HONESTLY, DOES IT MATTER WHERE A PERSON IS FROM? MANY OF US ARE ORGAN DONORS BECAUSE WE KNOW WE WILL NEVER KNOW WHO WE HELPED AFTER WE ARE DEAD, THIS SHOULD BE THE SAME. SO…NOW IS IMPORTANT FOR US…LATER IS IMPORTANT FOR THE REST OF THE WORLDS CHILDREN.
OK…OFF THE SOAP BOX…SO…IF YOU WANT TO START SOMETHING NEW…BE A DRVING FORCE…LETS SEE IF WE CANT FIND A WAY.

LOVE YOU ALL

KATHYP

BY THE WAY…I AM A CO Q10 PERSON FOR ABOUT 3 YEARS NOW…JUST DO A SEARCH ON IT, YOU’LL FIND ITS GOOD QUALITIES. YOU CAN FIND IT IN THE VITAMIN AISLE. SADLY, IT’S NOT CHEAP. BUT I USUALLY WAIT FOR THE BUY ONE GET ONE FREE SALES. PPS ASIDE, ITS STILL GOOD TO TAKE.

I GUESS IT’S MORE EXPENSIVE THAN A MULTIVITAMIN BUT PROBABLY CAUSE IT IS GOOD.

GBY

KATHY

I think your vision getting worse has nothing to do with polio.

Hi- Wow! That sounds really exciting and interesting.I for one, would really appreciate being kept informed on your mission. Please let me know how you do.

Thanks. Kori G

Hi Louise - This is the first post I have seen from you. Welcome!
My only big complaint with the Care Place is they don’t have a live chat,
you know what I mean, kind of like and instant message. You have to post
your reply like you’re doing and then wait for someone or the person you are
writing to, to write you back.

There is also an option to send a private message that others don’t see. But
I do wish they had the “live chat” I think it would generate more interest
and people would be more inclined to participate. Some of us are very open
and post a lot, others are a little shy but I give everyone credit for
participating, that’s what it’s all about.

So feel free to share your story!

It’s a great network of people with problems just trying to cope and we all
learn from each other.

Friend from Calif
Paula

Kori, my doctor will give me the pain meds when I want then…no problem. What I find helpful is the collidal minerals, it helps reduce the pain so I can sleep. It has a side effect of making you use the potty about an hour after drinking it. I mix it with apple juice or grape juice…could be the juice. The pain meds I have tried in the past made me mentally slow down. I dont like that. Oh yes, I am a capricorn…so what does that mean?? Bev

Kori post-polio-cpt5870@lists.careplace.com wrote:

I think the hospitals have played that show…one to many times. Lets guess what wrong with this patient who cant walk. I was actually kicked out of the first physical therapy class that I was sent to…to regain my lost mobility. They were rude and acted like I was faking when I could not raise myself up from a kneeling position. They had no idea what pps was. I went and after a few sessions I got worse. After that i became educated and an educater. The next pt was great. The therapist knew all about pps. She stretched my leg muscles and gave me pointers on how to do things without injuring my body. She was not with the hospital. After a session she would sit and ask me questions about the pps.Beverly

KATHYP82 post-polio-cpt5870@lists.careplace.com wrote:

My Mom went blind when the polio she had effected her muscles around her eyes. She regained her sight a year later. Bev

chaco post-polio-cpt5870@lists.careplace.com wrote:

Hi Bev-

That’s really scarey to me.My eyes have been getting worse too quickly.Plus, when I had paralytic polio, my right side of my body and the left side of my face was paralyzed. I have been having a bad problem in the past several months where the whole side of my face will scrunch up in a contraction and it looks like I am snarling at people. I hate it.

It’s so embarrassing and it is so uncomfortable.Or I can feel the muscles quivering in my cheek.My mom did all the massaging of my face to relax my muscles. My face was drawn down, but these contractions pull it up.Anyone else going through this? My face did go back to looking normal but now it’s doing this on the same side that was paralyzed when I was 3 yr.

Kori

You might ask your Doctor about botox injections in your face. I was told that it is used sometimes for muscle cramping and such.

Kori

Hi,

I cannot get along without my CoQ10 it really helps my pain now I am not
pain free by any means but without it I can’t move much without hurting at
least this helps and I think it is worth the money.

Deannie

Hi Kori,

COQ10 helps my pain my doctor said it is something that our body
manufactures but as we get older it slows down so we need to take the pills
to build it back up again.

I have never heard of polio affecting your eye sight but then again I have
not heard of a lot of things.

By the way I go to bed early and watch TV so I am not on the computer late
at all.

Take care hope you find something to help your eyes.

Hi to all
Deannie

I would think that having a facial massage sure would not hurt anything and it may soothe those muscles that are pulling. I would like to pull up a few things, like my 2nd chin…bev

Kori

Hi,

Hope you are doing ok I have not been on careplace in a while been kinda busy. I am fine don’t like the cold weather we are having but I know it had to come as it is fall.

You take care keep in touch.

Darlene

hiya,

I’m having big time pps stuff, one of those down cycles. also pretty depressed. really glad to see you, though. i want to get back to board, may be a while. say hi to everyone…

My puter is about to die. do you think another desktop or a laptop would be best for someoone with weakness/pain in hands and arms? money is short, but gotta have a puter…

love to you,
carole

I was just thinking I hadn’t heard from anyone for a while, I had gone to Tenn.to visit family, (which really wore me out !!) and I got on line and found purrduck, wannadance, a new friend David- Welcome!-and deannie. Hi ya’all. Hey-I have a question.Has anyone had this problem?I’ve had it happen quite often lately and it scares me when it happens. I’ll take a sip of coffee or pop and when I swallow it feels like it gets stuck way down in my chest, not in my throat.I actually feel it moving painfully down.It feels like I swallowed a hunk of steak whole or something! And sometimes when I eat, I find myself afraid to swallow cuz it feels like my swallower isn’t working. Or the involuntary motion of swallowing saliva stops and I find myself in the middle of a panic attack.Anyone else experience anything similar? Hi to Linda also-how’s it going? Kori G

deannie post-polio-cpt5870@lists.careplace.com wrote:

Hi
I am Don and i like your letter

It sounds like you need to breath deeply slow andput more air in your lungs and maybe your under stress.

I find it hard to find a man to write to ask questions and personal question .

Be carefull
Love