Kay,
Don’t let anyone run you off! The majority of us were not born with a
laptop in our crib and to learn just like you are learning. You hang
in there Kay.
God Bless You,
Linda D.
Linda - I totally agree with you…I have no tolerance for people that make
others uncomfortable for doing nothing wrong.
Kay, we will miss your spirit if you leave, please reconsider.
This is an open forum for people with problems like us, I know I have been
blessed by the new friends I have made so far, you included, and I would
hate to loose you. We can only help each other and none of us are perfect.
God love you,
Paula
HI
I WENT TO A DOCOTR ONCE AND HE GAVE ME A PERSCRIPTION FOR ARTHURIDISE AND IT COST ME $ 90.00 FOR 30 DAYS AND THAT WAS 5YRS AGO. wHO CAN AFFORD THIS? DON
Hi-
I am getting so many new names and e-mails.I don’t feel so alone anymore at all !! I am glad to hear from others with PPS and how they are coping with day to day problems. All the heart to hearts conversations is good for the soul. Take care. I will be in touch. Kori G.
deannie
hi what ones should i change the only one i went to get away from is dwb or what ever his name is. i can’t take personal atacks don’t know if it is the depression or what so please let me know how to do this i enjoy all the others but some people you just can’t be nice to
kay
HELLO FOLKS
LET ME BEGIN BY SAYING THAT I AM SORRY TO ANYONE WHO FELT OFFENDED BY WHAT I SAID. I DID NOT MEAN TO DO THAT AND IT WAS NOT MY INTENT TO GIVE THAT IMPRESSION. I WAS NOT REPLYING TO KAY, I THOUGHT I WAS SIMPLY POSTING A MESSAGE IN A LONG LINE OF MESSAGES. I KEPT SEEING EVERYONE ASKING QUESTIONS ABOUT THINGS. WONDERING WHAT TO DO ABOUT THIS OR THAT. ALL I WANTED TO DO WAS TELL YOU......THERE IS A PLACE YOU CAN GO TO. I'VE POSTED THIS INFORMATION MANY TIMES OVER THE PAST FEW YEARS AND I GUESS I JUST GET FRUSTRATED TO KNOW THAT WE WITH PPS STILL DON'T HAVE THE INFORMATION WE SHOULD HAVE....AND EVEN WORSE...OUR OWN DOCTORS DON'T KNOW. IT DOES MAKE ME WANT TO SCREAM.
WELL....LET ME GIVE YOU FOLKS THE LINKS TO SITES THAT SHOULD BE OF SOME HELP. START HERE http://www.englewoodhospital.com/medservices.cfm?pageid=198&bc=0,8,158,198
IF IT DOESN'T SHOW IN THIS MESSAGE AS A LINK, JUST COPY AND PASTE IT INTO YOUR ADDRESS LINE AT THE TOP OF THE PAGE. THEN AFTER READING THE FIRST PAGE... GO TO THE BOTTOM OF THAT PAGE AND TAKE THE LINKS AT THE BOTTOM.
I CAN TELL YOU THIS, DR. BRUNO IS "THE MAN" WHEN IT COMES TO PPS. FEEL FREE TO CALL HIM OR WRITE HIM. IF YOU CAN GET AN APPT TO SEE HIM, ALL THE BETTER. HE IS AN ACCESSIBLE DOCTOR. THERE IS A LOT OF INFORMATION PROVIDED BY DR. BRUNO. I KNOW IT'S A LOT OF READING BUT TAKE IT ONE ARTICLE AT A TIME.
ALL I CAN SAY IS, I AM TRULY SORRY IF I OFFENDED ANYONE, THAT WAS NOT MY INTENT.
AND FOR THOSE WHO MIGHT OBJECT TO MY CAPITAL LETTERS, I AM SORRY, I AM NOT YELLING. IT'S JUST EASIER AND LESS PAINFUL FOR ME TO TYPE THIS WAY WITHOUT HAVING TO KEEP USING THE SHIFT KEY ALL THE TIME.
I HOPE YOU ALL CAN UNDERSTAND THAT I MEANT TO HELP.
BLESS YOU ALL
KATHYP
HI KATHY I AM SO SORRY THAT WHAT I SAID CAME BACK ON YOU . YOU DID NOT SAY ANYTHING THAT UPSET ME IT WAS DWB THAT ATACKED ME PERSONAL AND I JUST CAN’T TAKE THAT. I DON’T KNOW WHY MAY BE ITS THE DEPRESSION OR I COULD JUST BE A TROUBLE MAKER LIKE HE SAID BUT I AM VERY SORRY AND I AM GOING TO CHECK OUT YOUR WEB SIT
SORRY AGAIN
KAY
Hi Paula.
Yes it is good to talk with someone who understands what you are talking
about. I have a friend here that has had polio also and is just starting
to go thru PPS she is having trouble adjusting to the slowing down part and
her family is not very supportive. I have given her the careplace site but
don’t know if she will go on it or not hope so.
I am so thankful to have my chair it gives me a lot of independance that I
would not have otherwise.
I go tomorrow to get my brace fixed it broke last Friday morning maybe I
will get a new one we shall see.
You take care got to go get supper started for my hubby. Keep in touch.
Darlene-(Deannie)
Hi Kay,
How old is your brace I got a new one it is a lot lighter than the old one
was. The plastic is different. I go tomorrow to have it checked out
again. I can’t take strong pain medicine so I use Tylenol and Elavil at
nighttime which seems to help.
I also have a massager that sits on a chair and I can sit on it it runs for
about 15 minutes and it really helps my back.
Hang in there we will make keep in touch.
Darlene(Deannie)
Hi Kathy,
I understand it does get frustrating at times I will go on the site and
check it out and also I will send it on to my friends that I have not
convinced to go on careplace yet. I am not offended keep on typing.
Darlene(Deannie)
Hey Don,
Try taking Elavil it has helped me a lot and is real inexpensive don’t know
if it will work for you. I also take CO Q10 which is in the vitamin asile
at the stores. Also I use a massager which fits on a chair & I can sit on
it. Things do get a little confusing at times join the club. I am 72
had polio when I was 14 so got PPS bout 12 yrs ago. I am in a wheelchair
but can walk a little with braces & crutches.
Take care hang in there
Deannie
Hi Deana my brace is about 2 yrs old it is the old kind but has a bar on the back of the knee to bend it. but it is to heavy in the foot for me to pick up i can’t rember way the dr said the other kind wouldn’t work. but when he checked my legs he found that they left the pins in my good leg to long now my left leg the bad one is 2inchs longer then the good one which really mess up the walking thing. if the old dr was still alive i would have concered killing him lol (just kidding) i all so have the heat maggege in my chair and it does help and i have a ajustable air bed that helps to. when you wake up feeling like crap what do you do? nothing i have tryed works.\ my husband he is 79 and i just got meals on wheels that helps a lot He needs a knee replacement but keeps puting it off. My son is in the army he is in korea so that kinda gets me down to. so any suggestion you have let me know\ your friend kay
What in the world is going on here? I’m new to Careplace and I run across e-mails from people apologizing for what?
Expressing their pain and frustrations? And others are condeming and judging?
For Heaven’s sake, I thought this was all about banding together, voicing our personal experiences and sharing our pain or accomplishments.If I choose to respond, I shall. If I don’t , I won’t. Whatever happened to the old adage of : "If you can’t say anything nice, don’t say anything at all."Glad I didn’t have to pay for the privilege.
Kori G.
You are right Kori and I am with you 110%. It’s nobodies business what we say on here and if they don’t like it then stay the hell off this web site.
Rick B.
Hi Paula and all the others, I sort of feel like a snoop or a peeping-tom or something reading all the e-mail addressed to others that comes to my inbox via Careplace. I do love your attitude and your wisdom. You sound very caring and sincere and genuine.I was so frustrated or I should say I am still frustrated learning my limitations.
Compared to how I used to be, always working, sometimes 2 jobs at a time.But after reading how bad some of us have PPS, I thank God I don’t have it worse than I do. I am supposed to wear a back brace when I walk and use my walker.I have a right leg brace. But I am more comfortable leaning on a shopping cart and sort of shuffling my feet.
I just recently learned how to use the electric carts in the grocery store, but I feel those should be reserved for those that can’t walk at all.But my family keeps telling me that if I don’t start using conservative measures, that I will be one of those persons that can’t walk at all. This has been such a revelation to us all.
For example, my husband couldn’t understand how I could be so tired after sleeping all night-then want to sleep all day also. Now he knows. And I know. I used to wonder if there was something wrong with me, why I was so tired. I know I wasn’t lazy and my husband knew that too.But the diagnosis of PPS sure answered a lot of questions.And my husband and kids are my support system. So when he got sick in Dec.06, was hospitalized on life-support for 2 weeks, and almost died from Bacterial Spinal Menegitis, then started having heart problems too…well, I was out of my mind with fear.He is my rock. We’ve been together for 27 years… 
Who’da thought!!!
He was a biker and I was a bored suburban housewife married to a VERY abusive husband. He almost killed me one time. I finally left him and moved in with my brother and his family temporarily. That’s when I met my (now) husband.Been together every since.
The thought of being apart is quite terrifying.
I guess I’m running out of space. I’ll get back to you.
Friends.
Kori G
Hi again Deannie, What is CoQ10 for? What does it do for you? I am curious. I was on Voltaren (for arthritis) for 3 years.Everything I read about it was bad for extended usage.I just recently ordered some of that Dr. Franks all natural spray for pain releif. I’ve only been taking it for a few days and it says it has to build up in your system. I hope it works for headaches. I get awful headaches frequently. Had anybody else heard that Polio also affects your eyes.? My vision has been getting increasenly worse in the past few years. I need stronger glasses every couple of years.At this rate, I will be blind by the time I am 60. I will be 57 in Dec. of this year. Dec. 29 th. is my birthday. I forgot who asked.Linda or Paula. Hi Ladies 
Good night for now. Kori G
deannie post-polio-cpt5870@lists.careplace.com wrote:
Hi Paula,
My bithday is Dec 29th. I’m one of those stubborn Capricorns, which has been why I have been able to work so long before finally having to give IN to the PPS , not giving up. I have always been a caregiver by nature.
I worked in Group Homes most of my adult work life until I discovered that I could make more money getting my State license to be a CNA (Certified Nursing Assistant). It’s not a glamous job. But my patients loved me because I always took extra time with them.I just couldn’t do the ‘production-line’ care thing.
I reallly miss the work.I was constantly being ‘encouraged’ by my boss, the Director of Nurses, to speed up my pace. It was hard to do and remain human. Sometimes I wonder if getting the PPS wasn’t a blessing in disguise so I had to go on a medical leave of absence (cuz of the pain) instead of getting fired for not working fast enough…It’s a thought.
Kori G. I was in my early to mid fifties.I just wish I’d had the strength to continue.
Hi-Doesn’t your dr. give you anything for pain? Mine gives me MS Contin(Morphine) for chronic pain. And I take Neurontin which is actually a seizure med, but it’s also used for treating nerve pain which I have.
My feet would wake me up from a sound sleep just burning like on fire, really bad. It’s from the polio causing the original nerve damage when I was a child. I also have an awful time sleeping thru the night. I take Xanax for anxiety and not being able to sleep.I was in intensive counseling for 5 months trying to come to terms of my situatuation.Hope you don’t mind me asking.
Friends, Kori
HIA FOLKS
IT'S THE LOUD MOUTH KATHY AGAIN. HAD TO REPLY TO KORI ABOUT WHEN SHE WAS BORN. IM A CAPRICORN TOO, MATTER OF FACT, I'M A CHRISTMAS BABY AND HAPPY TO BE ONE. BUT I DO HAVE TO TELL YOU AN ODD STORY. MANY YEARS AGO (LIKE MAYBE 30 OR MORE YEARS), AND I CERTAINLY DON'T REMEMBER WHERE IT WAS, BUT I WAS READING SOMETHING ABOUT THE TRAITS AND/OR TENDENCIES OF CAPRICORNS....AND GET THIS...IT ACTUALLY SAID THAT BECAUSE THIS SIGN RULES THE KNEES, THAT CAPRICORNS WERE MORE LIKELY TO HAVE POLIO, PARTICULARY IN THE LEGS. I SWEARRRR TO GOD IT SAID THAT....FREAKY HUH? IT KINDA FREAKED ME OUT THEN BUT NOW IM ACTUALLY CURIOUS.....HOW MANY PPS PEOPLE ARE CAPRICORNS? HMMMMM????
BUT I DO AGREE WITH YOU....MY MOM ALWAYS SAID I HAD NO PATIENCE...I LIKE TO THINK OF ME AS BEING A PERSON WHO STOOD THEIR GROUND AND DIDN'T CHOOSE TO JOIN THE REST. I NEVER FELT BETTER THAN ANYONE ELSE, IT'S JUST THAT INSIDE OF ME I FELT THAT THE WAY I DID THINGS WAS RIGHT FOR SOME PEOPLE. CARING ABOUT PEOPLE HAS BEEN A WAY OF LIFE FOR ME, BUT IN MY OWN WAY. DOING THINGS MY WAY ALWAYS WORKED BETTER BUT FOR THE LIFE OF ME, IT SEEMS NOBODY "GOT IT"
AND KORI....WHEN I WORKED FOR THE STATE, I TOO GOT AN EVALUATION THAT BASCIALLY SAID....WE DONT CARE IF YOU ARE DOING IT RIGHT OR NOT, WE JUST WANT YOU TO STOP TAKING SO LONG. I AM SORRY BUT I CANNOT WORK ANYWHERE THAT DOES NOT ACCEPT QUALITY TO BE NUMBER ONE. I DON'T BELIEVE THAT MISTAKES SHOULD BE ACCEPTABLE WAY FOR ME TO WORK. I AM NOT SPEAKING FOR OTHERS, IT'S JUST ME. BUT, WHO ARE WE TO SAY WHAT IS RIGHT? ALL WE ALL CAN DO IN LIFE IS DO WHAT IS RIGHT FOR OURSELVES.
WELL.....I JUST WANTED TO SHARE THIS ODD ANECDOTE. WHEN I SAW YOUR POST IT JUST MADE ME REMEMBER SOMETHING FROM MANY YEARS AGO....I JUST FOUND IT ODD BACK THEN FOR ANYONE TO MENTION POLIO IN A HOROSCOPE. OH WELL.....CHEERS TO ALL CAPS....AND EVERYONE ELSE.
LOVE YA ALL
KATHYP
Hey- that was pretty cool. Thanks for your input. You made me smile Kori