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Polio not Post Polio - VAPP Hello. I'm new to this forum and have noticed everyone talking about PPS but no one here seems to have Polio itself, as I do. I got Polio from the vaccine when I was 7, in 1979. Its called Vaccine Associated Paralytic Poliomyelitis. When I was younger I had the muscle pain, cramps, weakness. I still have major weakness but the pain and cramps have gone. I'm 36 now and my doc says I don't have to worry about PPS because I was older when I got Polio. She stated PPS usually strikes those that got Polio very early in life. She is a PPS doc, the only doc I could find that was familiar with Polio itself. The reason for my post is to try and find other with VAPP. Thanks |
Re: Polio not Post Polio - VAPP hello jordens mum i had polio 3years of age 1957 alot of people got it at the same time my left leg was affected leg is very thin no mussel so i have to rely on my right leg to do all the work im attending doc at the moment getting tests done they cant tell me whats wrong i think they are trying to elimanate other things i dont think pps is recognised as an illness iknow theres something going on with my body get very tierd sore mussles feel wabbit all the time docs have never mentioned pps.all the best boots |
Re: Polio not Post Polio - VAPP Thanks for the reply. I'm sorry for your troubles. I went through all the pain and weakness when I was 7. My legs are not thin but I do have a lot of atrophy in my inner thigh muscles. My legs are weak but I can walk without too much trouble. I am prone to falls though. I recently had weight loss surgery, Lap Band, and am working hard to lose the weight. I wish I had some advice but I'm no expert. We all have different needs and what works for one, might not work for all. Brightest Blessings To All |
Re: Polio not Post Polio - VAPP hi jordens mun thanks for reply .have you tryed the polio foundatins for infor mation they might be able to put you in touch with other people thats been affected like yourself there branches all over the world this is the only forum iv found good hunting there must be more . |
Re: Polio not Post Polio - VAPP i too had polio at about age 7 from the vaccine. it has greatly affected my life....i had major foot and ankle surgery in 1985 because i kept falling when my ankle would twist. even after the surgery, i still have a lot of balance problems and in the winter i can expect to fall several times because when i slip i can't catch my balance... i had what is called a triple arthrodesis so most of the bones in my ankle and foot are fused.....the entire right leg is so much weaker than the other, but i just keep on going.... i've always worked but find as i am getting older it is harder because i've spent my entire life compensating for my right leg weakness by using my left leg more....now i've got arthritis in both hips, kness, feet etc......sigh... i am just wondering how i'm going to do when i get into my 60's and older. i feel for all the others out there who got the very disease that they were trying to prevent...it just sucks... i just pray that i don't get this PPS that everyone is takling about....once is more than enough.... any words of wisdom from anyone else who is dealing with this? i would appreciate it very much..............................peace1910:angel: :angel: |
Re: Polio not Post Polio - VAPP I've tried over the years to get in contact with others but we are few and far between. My docs wanted to fuse my ankles but my parents said no, I had been through enough and they weren't sure what the long term effects would be. Both my legs are about even when it comes to weakness. My left foot is deformed a little bit by a hammer toe but my right foot is "normal' looking. I go to the gym 3 times a week with a trainer and we've found exercises that I can do with my legs. I hate the winter time too. I haven't fallen in a few years but once the cold weather starts, I get nervouse because I know the snow is coming. I slipped on my kitchen in January and use a walker from time to time until my left hip heals. I am going to keep the walker handy for the winter. It will give my support if I have to walk through snow. |
Re: Polio not Post Polio - VAPP JordensMom, You have one of the best polio newsletters in the states. You have a support group you should contact that is called the Yakima Lower Valley pps support group. Contact the Polio Outreach of Washington at 1-800-609-5538 or 253-847-8114 Also, maybe they can put you in touch with a doctor a little more knowledgeable. By the way, you don't have the polio virus NOW. You are now dealing with the aftereffects. The virus is long gone. I, too have just discovered this board. |
Re: Polio not Post Polio - VAPP I'm 23 and got polio when I was a baby. My mom was 16 when I was born and had alot of problems, she was to busy running away from her parents and boyfriend to remember to take me to the doctor. Its possible I got the virus from another baby who had the vaccine and was living in the house where my mom was staying, so technally that means I got it from the vaccine to. My right leg is effected, it is small and very weak, I wear a brace that locks my leg straight to walk. Mostly I am able to do OK with everything but sometimes its hard taking care of my children who are 1 and 3. I'm thankful my husband who helps me alot. I'm a little scared my polio will get worse as I get older but I don't think theres anything I can do to stop it ecxept hope and pray. Dana [QUOTE=JordensMom;3252924]I've tried over the years to get in contact with others but we are few and far between. My docs wanted to fuse my ankles but my parents said no, I had been through enough and they weren't sure what the long term effects would be. Both my legs are about even when it comes to weakness. My left foot is deformed a little bit by a hammer toe but my right foot is "normal' looking. I go to the gym 3 times a week with a trainer and we've found exercises that I can do with my legs. I hate the winter time too. I haven't fallen in a few years but once the cold weather starts, I get nervouse because I know the snow is coming. I slipped on my kitchen in January and use a walker from time to time until my left hip heals. I am going to keep the walker handy for the winter. It will give my support if I have to walk through snow.[/QUOTE] |
Re: Polio not Post Polio - VAPP It truly amazes me at the amount of people in the US that are still contacting the Polio Virus- I do feel for y'all... Also to whoever commented on not still having the Polio Virus- The virus is gone and it truly is the after affects that the Virus did to our bodies... It truly is so sad because they seem to have forgotten years past. Janet |
Re: Polio not Post Polio - VAPP Your right Janet but nobody my age knows about Polio, some times they ask me why I wear a brace and I just say I got a virus when I was a baby that paralyze my leg. I'm a little scared if I have problems when I get older there will be no doctors left that know about Polio, but Kevin tell me not to worry because they still get Polio in places like China and India so we can go there if we have too. Right now I just want to be able to take care of my children and maybe have another one but not right away. My mom had alot of problems in her life and most of them ended up effecting me, like not getting the polio vaccine, but that was just the beginning, the hurt went on right up to her last day and beyond. Anyway all this made me very determined to be the best mom ever to my children, and I try very hard every day for that. Dana [QUOTE=Janet W.;3371207]It truly amazes me at the amount of people in the US that are still contacting the Polio Virus- I do feel for y'all... Also to whoever commented on not still having the Polio Virus- The virus is gone and it truly is the after affects that the Virus did to our bodies... It truly is so sad because they seem to have forgotten years past. Janet[/QUOTE] |
Re: Polio not Post Polio - VAPP Dana - So sorry to hear, I think you are the youngest person I have heard from in the US, that had Polio. Don't worry about the future, hopefully they will have a cure for PPS. Like you said people in other countries are still coming down with Polio. Hang in there, try not to overdo- like we were all told "Use It or Lose It". Bless You Janet |
Re: Polio not Post Polio - VAPP I would like to be friends with some one my age that had polio, maybe they will find this group some day. Sure I hope they find a cure for all of this but for now I just do the best I can. Most of the time I do OK but some days it bothers me I can't do all the things others moms do like at the play ground with there kids. One thing I wish for is a better brace that could support me without having to keep my leg straight to walk. My husband is a computer engineer he says there are people working on things with computers that can make a brace like that, well maybe some day I can get that and look more normal walking. Kevin is off work today and taking care of the kids this morning, I am still in my pajamas so I guess its time to get dressed and put on my brace so I can help to. I can get around the house OK without my brace but I have to use my hand to hold my leg and I can't take care of a 1 and 3 year old like that. Dana [QUOTE=Janet W.;3375241]Dana - So sorry to hear, I think you are the youngest person I have heard from in the US, that had Polio. Don't worry about the future, hopefully they will have a cure for PPS. Like you said people in other countries are still coming down with Polio. Hang in there, try not to overdo- like we were all told "Use It or Lose It". Bless You Janet[/QUOTE] |
Re: Polio not Post Polio - VAPP Dana - Your husband sounds like a sweetheart!!!! I am so glad for you.. yes, try and wear that brace as much as you can especially with the young children you have... Plus it will save you energy and maybe you will not get the PPS... Not everyone that has had Polio gets PPS. So do the best you can and take care of yourself, too. Don't push yourself into those heavy duty exercises we did when we were younger... But keep yourself toned as you can... I hope you do find another Polio Survivor closer to your age- there has got to be some out there... Keep postin' to let us know how you are.. Hugs Janet ;) |
Re: Polio not Post Polio - VAPP Janet, Oh yes Kevin is a sweetheart and sooooo much more, some times I can't believe how lucky I am. His parents to, they are the most wonderful people, I call them Mom and Dad because thats what they are to me, there like the 2 loving parents I wished for growing up. I mean, I love my grandma and grandpa, they did the best they could to raise me when my mom couldn't, but still I wanted a normal family with a loving Mom and Dad and now I have that. Thank you for the advice, your right I need to wear my brace so I can be safe taking care of my children and I know its better for me. My right leg is 2 inches shorter and my knee bends back when I walk without my brace so I limp real bad and it hurts my back. I hope your right maybe I can avoid the PPS if I take care of myself, beleive me I get plenty of exercise being a mom. Dana |
Re: Polio not Post Polio - VAPP Dana - I really am so happy for you... You surely deserve the best. I know it has got to be hard on you with the kids and all- BUT remember to take care of yourself and pace your activities... Wear the brace as much as you can- and try to do find easier ways to do activities... Save your Neurons as much as you can... This way you may never have to face the after affects of Polio itself.. I pray you never have to... Hugs and God Bless Janet:angel: |
Re: Polio not Post Polio - VAPP Janet, you know its hard to pace my activities with a 1 and 3 year old, I love being a mom and I try allways to do my best, also I have a lot of help from Kevin and his parents, they live not to far from us now. I do understand it is important to wear my brace allmost all the time, I can get around the house OK without it but I have to use my right hand to push my leg back which makes it hard to take care of the kids that way. With my brace on I only have to use my right hand to unlock it to sit down. When I was younger I hated my brace and shoe lift, I thought they make me look like a freek and I would do anything to not wear it. I think one of the main reasons I went with my mom when she move from CA to GA is she would let me go without my brace, my grandma allways made me wear it. I did'nt wear it for over a year, I had alot of pain in my right knee and also in my back from walking with my leg so much shorter. And sometimes I would fall. After I got to be friends with Kevin he asked me about my leg and if there was anything that could help me walk better and not fall. Finally I told him I had a brace, he said if it help me walk better than why not use it. I was so scared what he would think but he said it made me look more beautiful not to limp so bad, I think thats when I start to realize I love him. I hope the PPS stays away at least until my kids are older. We want to have another baby but we decided to wait a few years. Pregnancy is hard for me, I have to use a crutch to walk in the last few months. We are only 23 so theres plenty of time, I just dont want to wait to long and have my polio get worst when I have a little one. Dana |
Re: Polio not Post Polio - VAPP Have you tried looking into having a lift buildup in your short leg? My left leg is only 3/4 inches shorter than my right, but it caused me a lot of back and neck problems. (headaches -ALL the time). When I had it built up,, it took care of my headaches. I still have back problems, but that is for trauma to it. I also see a chiropractor regularly, and have for most of my life. Granted there are good ones and other that are not so good. So search around and get some opinions from others. Wish you luck. Tom |
Re: Polio not Post Polio - VAPP P.S. Have you heard of Dr. Richard Bruno's book "The Polio Paradox"? It is excellent and I highly recommend it. They have paper back and also hardback. |
Re: Polio not Post Polio - VAPP Tom, when I am wearing my brace I do have a lift on my right shoe about 2 inches. I only get the pain if I walk to much without my brace because then I don't have the lift and my knee bends back. Now with 2 kids I hardly ever go without my brace so its not an issue any more for me. Thank you for the name of the book I will look for it. Dana |
Re: Polio not Post Polio - VAPP Hope I was helpful. |
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