Last post Tue, Aug 12 2008 7:48 AM by george9t7. 12 replies.
HI, I have post-polio syndrome and I would like to chat with other people who have it also.
Hi, I have post-polio sybdrome, too and I will be glad to speak with you. My English isn't so good, so, hope you will have parience with me , Thanks. Be blessed!
Hi there guys and girls, I am another one with post polio syndrome, I am a bit scared because I still dont understand why its coming back, but if anyone wants to tell me more about it please do....Ciao for now Lilla xoxox
Dear Linda,
Both my parents and closest childhood friend had polio in 1951, all had to be in iron lungs. I believe that I had polio too, although not clinically diagnosed, not as sick as parents or friend. I think this because my left leg has never been "right" my whole life - poor rotation, hip problems, cannot sit cross-legged, always a clumsy dancer and clumsy at sports. I am now 61 and over a year and a half ago my left foot started to feel weird. I have ended up with a dropped foot, weak left leg/hip, so I wear a brace. Right leg is starting to weaken. I use forearm crutches and just bought a 3-wheeled scooter. I can't walk very far without getting really tired. I have fallen a lot too. The worst part are the muscle twitches - non-stop all over, and muscle cramps/stiffness. Neurologists say they think I have ALS, and that I couldn't have PPS because my reflexes are strong. They tell me I have a fatal disease, that there is no treatment, and send me home with no hope. Maybe I am not a textbook case? Doctors have been absolutely no help at all. I had electrodermal screening and the results showed polio, not ALS. I tend to believe the screening more than the neurologists. I have only had two tests (MRI and EMG) out of the 8 diagnostic tests needed to confirm ALS, yet the doctors won't do more tests. I have recently applied to change my health provider.
I really want to talk to other people who have PPS and share symptoms. I have done a lot of reading, but it just isn't the same as talking to a person who is experiencing the same things that I am. It is very scary. I have had to retire early because it is too hard to get around - I have been a high school science teacher for a long time, and I loved every minute of it. I have made changes in my life - I try to get the the pool a couple times a week, changed my diet to all organic, had my dental mercury amalgams removed, take lots of vitamins/supplements/amino acids/antioxidants, and I am presently taking no medications. I still don't know what disease I have, except that it is a motor neuron disease. I know that sometimes we don't get the answers that we would like to have in our lives, and we have to make the best out of scary situations.
Do you have muscle twitches? Do other PPS folks have them? Is there any help for twitches? Does PPS continue to progress for a long time.....does it ever stabilize, or can you become disabled in all limbs?
Thanks for reading this. I would be so grateful for a response.
Carolyn
Hi, my name is Jeff. I too are a polio I contacted it in 1957. I think we are the LUCKY ONES to live. I"ve heard that aswell, that polio is coming back, if it does, I"m sorry to say that they will never get me back in that Iron Lung. They call it PPS, but some times they call it LEOP ( Thats Late Effects Of Polio, I wish that they make up their minds. Stay Positive. Jeff.
hello i am rainey and feeling the side of PPS ! times i feel so alone and scared ! i worked so hard to get where i was and now i am in a chair !i feel defeated ! will love to chat with anyone at anytime ~~~~~~~~~~~~~ rainey
i would love to chat with you anytime yes i have polio and just starting with pps ! no fun rainey xo
ADB752: HI, I have post-polio syndrome and I would like to chat with other people who have it also.
Hi Rainey,
This is my first time on post polio, but i saw you on another group that was similar. Yes, i love to chat and would like to chat with you anytime. I would like to be of help to anyone for any reason. If you want to know about polio, you are going to get more bs than you even know. Even with peoples best intentions, lies are everywhere. I would say don't believe or disbelieve anything. don't even believe me. The only person who can take control of your health is you.. Some alternative health people help a lot, others help not at all.. The medical profession used the polio epidemic to elevate their professional power, status and money. They began abusing it like the drug companies do. The medical and drug industries will not help you. . Polio from a medical view can not be helped, other than from an assist or mobility devices. Polio, as medically defined, has no cure and that definition prevents any doctor from getting research grants to look. Polio has been already defined as having no remedy or cure, so that anything working well has already been predefined as quackery... they gave up on polio and can't do anything. so we need to go elsewhere.
check yourself for B-6, magnesium, iodine, and for protein shortages. How are your bones? Polio victims usually have problems as i mention above. You are probably seriously short of amino acids. Protein powder from whey might be a good source and you can't just take multiple Vitus as they counter each other. i found that taking calcium and magnesium together renders the nutrients ineffective unless you take some at different times. separate magnesium calm and calcium. . Magnesium citrate is probably the only on en that works and the calm brand is super good. Check your PH and keep it above 7. I use baking soda in my drinking water and that ups the PH. I get Ph strips from the health food store and check myself almost every week. Try using coconut oil, apple cider vinegar and black strap molasses. You have to try these foods to see if they work.
Being scared won't work. You are scared because you do not know. you will know when you research and take responsibility for yourself. I guess we could compare post polio with roughly the same issues that happen as people get older, but PPS does it faster. I think PPS is about not having enough nerves to support the muscles anyway, so added stress or too much muscle use makes the existing nerves begin t also fail. The answer is to not exercise and not to over do it with the muscles. conserve. Not everyone gets PPS. My brother had polio worse than me and has been on two full length braces and needs his crutches to take even one step. He has to lock the brace to be able to stand or walk. Hes doing fine. never got post polio and gets around better than i do. He will be 65 this month on the 19th of August.
If you want to know bout polio think about this. Polio has always came as an epidemic that is shaped like a bell shaped curve. starts out slow then rapidly going up fast to the rounded top then down as fast as it came up. When the vaccine came, the empdemic was already mostly down the back side of the bell shaped curve. If the vaccine worked, it would have colapsed the bell curve. The vaccine did not do any good and most all of the cases after 1954 were from the vaccine itself. The more you find out obout vaccines, the more you will want to stay away from them.
My I was persecuted seriously with injustice from a family court in Sullivan county new York from 1992 through 1995 and thats when i suffered from the PPS. So, other than working the muscles too much the other cause is just mental stress. My court case is again abusing me. It started in 2005 this time and is still continuing. . The post polio condition has been taking a big toll once again. My condition got worse, much worse from 1992 through 1995 when i went from being able to walk up a six floor apartment in NYC to not hardly making it up one flight of stairs. So far this time I've gone from using no assist to using a cane to walk only a few steps. I'm having to go into a wheelchair now.
sorry if i'm too windy,
george
