I hope the PPS stays away at least until my kids are older.
Dana - I surely hope so, too. I will add you to my prayers and who know everything may be ok- you are still wearing your brace and that is Very Good.... Less energy there and you get help now and then.... Great..
You have to be a 'Mom' that is the most important thing- so many of us kept working so many hours raising families, etc. Not wearing assistive devices, but the real kicker is we were having signs and just blwoing them off- turning off from the neck down.
So if anything starts causing pain, weakness or fatigue - Don't Do It or Do much less of it....
The Best to you and your family- by the way- Kevin surely sounds like a doll
Janet, I am going to embaress Kevin is right here with me this morning, he is off work and taking care of the kids like he allways does, now I am going to embaress him when I tell you he is wonderful awsome and the best ever and I am sooooooooooo lucky to have him. If it was'nt for Kevin I would'nt be here today. 10 weeks before I was suppose to graduate high school my mom took her own life, she had alot of problems and was'nt there for me growing up but we all thought that was in the past and I moved here to GA with her. I found her that night it was the most horrible thing ever, Kevin held me the whole night while I screamed and cried, I was a mess for over a year, I could'nt sleep every time I close my eyes I would see it over and over. I had therapy and some time in the hospital still Kevin stayed by me he said it was OK he loved me and we would get though it together. I told him go find someone else he said no, and his parents were so wonderful to, they said Dana your our daughter now. Still there were times I wanted it to be over but I thought about Kevin and how much I love him and that made me want to live. Now he is my wonderful husband and we have 2 wonderful children. Kevin is so smart, he graduate from GA Tech with honors in 3 1/2 yrs and he is a computer network engineer. Soon we plan to look for a house, it will be a 1 story house so I don't have to go up and down the stairs, so you see I am trying to take care of myself. Your very nice to me and I hope your PPS is'nt to bad in the future. Dana
Awwww, Dana you have a great man... So sorry to here about what you had to witness... So much heart ache.. But I am so glad you have someone and the kids.. You seem to have alot of love and that is good.
I am on SSDI for my PPS mainly- I went from walking with a limp to 2 short leg braces and crutches and now I will have to go to the next step which is a Power Wheelchair- It is ok- I want to save what energy I have left... Polio affects not only the one area but can affect your entire body- we as young un's did not know all this or even as we were growing into adults... We were told to "Use it or Lose It" and most of the PPSers I now know are so much like myself-but there are so many out there and give me alot of support.
My husband gives me alot of support also. He too is suffering with illnesses- he is on a list for an organ transplant- we are a team and keep going- no children but we have our pets and love for each other.
wow,hello i am new to this site,as i have just recently found out about PPS in the last couple days...i had just gone to ****** to ask if complications could come with a person who's had polio in old age,and wow i found out they have a name for this...i was born in 1957,got polio at 9 months old but the doctors didnt find out till i was 3 yrs. old..it affected my left leg and foot,and i've had that triple arthrodesis surgery on my foot,couldnt do any surgery till i was 9 yrs.old...just in the past 11 yrs. i've had 3 foot surgeries due to bone growths because that foot is so stable and my job is being on my feet all day,walking on concrete..i've tried orthotics twice now,and dont think the doctors realize what they do to my foot,affects my leg,so i end up not wearing the orthotics then..and i've had that same problem,finding a doctor who is familiar with polio...for awhile now i come home from work and am just drained,but just contributed it to work,till i found out about this PPS,and it soo explains the fatigue i've had...i also experience more weakness in my leg,and sometimes even have to lift up my leg..exercise would not work with me as when i even try to use that leg to do something,i'll get muscle spasms,or when i've over-exerted that leg...i get foot pain and stiffness and when i've sat for just a couple minutes and then get up,i get pain in my foot,and most times i use a cane around the house anymore,but cant very well use a cane at work with the work i do...some days i feel it in my hip when i've had a hard day at work,because my limp can tire me after so much walking...i have no balance either...with the heavy lifting i do at work,i wonder if i will make things worse,as you should lift with your legs...seems my choices are a cane,walker,or a brace,or lessen my work load,and cant do neither as i have to work,so i push on till i cant no longer push on...but now i need to find a doctor who's familiar with this PPS and get tested...as long as i work on my feet,i will have other foot surgeries for bone growths so having a doctor who is familiar with polio would be helpful..
First of all welcome.... So sorry to hear about all that is going on... There are more and more Polio Survivors around that well who would know?? It surely sounds like you need to calm down some and start resting and pacing before it gets worse... I am not sure of doctors in MO? How close are you to Branson? There is a wonderful Dr. in NJ - he has written a few books and his name is Dr. Richard Bruno- maybe you could contact him for some help...
I live in NYS, wish I was closer but please keep e-mailing and please take care of yourself.
hi janet and thank you...Branson is about 4 hours from me,and no i've still not had any luck in finding a doctor or anything that could help me find one yet...getting frustrated...when i first found this site and reading your all's posts i saw that dr.bruno's book was mentioned several times so i went to barnes & noble to get it and of course,they were out of stock...i sure wish i could calm down some and pace myself,but i'm a divorced single woman so i got to work...but at least now i'm aware of this PPS and the possibility of ending up on disability before i can retire,so now i want to try to prepare for that...get this testing done,would then have a doctor that could see how i regress,so when i get to the point i cant work,then i've got this all documented down,and hope disability wont be so hard to get then...i have sooo much trouble finding shoes that will be comfortable,because i've found that expensive shoes can hurt just as much as cheap shoes,and when my bad foot hurts,that causes my good foot to hurt then...and after a few hours at work,my feet hurt so bad i wanna cry...$60 tennis shoes are expensive to me,so i'm sure wary of spending anything more on shoes to end up hurting just as bad...have spent money on orthotic inserts twice and even had to stop wearing those...when i typed in what type of specialist would diagnose PPS,it pulled up Infectious Disease doctors,but yet i've always dealt with orthopedic doctors,so am at a loss as to what type of specialist i need to see...
Really sorry to hear about everything - I surely hope things turn around for you soon. Do you have feet that are different in size?? I know some Polio folk that do.
As far as the doctor you can try and check for a Physiatrist(it is a speciality doctor for muscleskel) but make sure before you even go they know PPS and polio and are interested. These doctors came about I believe in the 30's or 40's- for Polio People - but so many doctors just don't want to be bothered.. Wish you luck let me know the outcome and Dr. Bruno definitely is the man if you should have to go on SSDI- He has a clinic at the Englewood Medical Center in Englewood NJ- It is the Post Polio Institute..
hi janet...yes i do actually have two differrent size feet...i've had three foot surgeries due to bone growths in the past 11 years,the last two only being three years apart,and the last one was just last year...i guess i'm going to start with a primary care physician(my daughter's doctor) as he also has a sub specialty in Infectious Disease,and see what happens from there...from what i've read so far,sounds like they'll rule out anything else first,before coming to conclusion of PPS...i might not be able to rest any at work,but when i get home from work,i'm pretty much done in so i rest then...ya know since the past few years,i kinda talk to myself and ask myself why am i having more problems now,when i've been doing this same work,like with these bone growths and being so tired when i get off work,more foot pain and leg tiring out more too,but then pass it off and just figure its the work i do and probably leg tiring out causing me to be more tired,till i finally began to wonder just how i'm going to be ten or so years from now,and thats when i got on computer and ******d,and wow i found out there was a name for it,PPS!!...and the first thing that caught my attention was the fatigue,and was like a light bulb went off in my head then...and the muscle weakness in my leg and joint pain in my foot all came together then too...my knee also gives out more frequent too...well i hope i get somewhere soon with this cuz its frustrating just trying to find a doctor who knows about polio these days...i appreciate you writing back janet,and will let you know how i get along on this...cheryl
Me to, my right foot is 2 sizes smaller and my right leg 2 inches shorter. Its very hard for me to get new shoes, I need the differint sizes then they put on the lift and the part that attach to my brace. And hi Cheryl I'm Dana 23 years old I had polio when I was a baby, it effects my right leg mostly.
wow,hi dana,you are very young,sorry to hear you going thru this...my left leg and left foot was affected on me,foot is one and a half sizes smaller than right,but i dont do the two differrent sizes,but have to wear tie shoes...and i would say my leg is more than an inch shorter but less than two inches though,and is enough to wear me out after a few hours at work...so this brace you wear,what does one look like in today's time,or are they still the same as what i wore 40 some years ago?..the reason i ask is cuz the last foot surgery i had last year due to a bone growth,this doctor gave me options of leaving the bone and wear orthotic inserts,a brace,or do surgery to file down that bone,and no way was i interested in the brace as i had days of those as a kid,but am even now reconsidering that,if it would help me at my work ya know...but i know walking casts are no longer like what i had as a kid,so thats why i wonder if the brace changed any too...i did the surgery cuz no way i was walking on that pain,and when i see a doctor,that means i can no longer withstand the pain,but dont think these doctors realize what they try to do with these orthotic inserts,affects my leg after a certain time,so then i have to stop wearing the inserts...and finding shoes anymore is almost impossible for me,and dont know what to do..in fact i was back in the store again looking for shoes today,going to try nurse's shoes this time...i pretty much use a cane around the house or when i go out...and everytime i get a bone growth and they file it down,it can create another area for one to develop,and as long as i work on my feet,i'll get them again then...i know one thing,i wont go back to that last doctor,and will know to let the next one know,dont everrrr think about putting staples in that foot,instead of stitches!!...i wish you well dana in your young age,its not that easy i know...cheryl
My Goodness, see there are alot of Polio people with 2 different sizes in feet- I did not have that problem, although I think one foot is about 1/2 smaller than the other... My left leg also was affected.
I wear 2 braces, recently had to get one for my good leg- they are AFO's - they make them so lightweight this day and age- not the metal and leather ones they did years ago. although some still want to wear those when they are told they need braces... Mine is out of carbon and lightweight plastic with velcro. It helps because not only helps me walk but also my feet do not drag like they were.
best to you and Dana- she is still a baby- raising babies.
Hugs Janet PS- I am going into my next phase and getting a power chair- my shoulders, neck and arms have also taken the brunt - so I want to save what I can for as long as I can.
wow janet,how old are you,if i'm not being rude to ask?...i'll be 51 in march...i had a drop foot in my left,and is the reason i had the triple arthrodesis surgery,and which has been most of my problems,the stiffness i now get,the pain,and with the bone growths..and any surgeries i've always had was on that foot..my left leg is skinnier than my right,and i have no muscle strength,the main muscle was damaged with the polio,so it just basically is there to help with the right in walking...so far,i've not had any problems with my right leg in that it bears most of what my left cant do...i've read that some think exercise could be good,and some say that it would be more harmful,which i tend to think exercise would not help for me as when i over-use that leg or try to use that leg to do something,i get muscle spasms and twitches...i get sharp shooting pains that go thru my left foot and will cause my foot to jerk..when i get home from work being on my feet all day,it can be unbearable..when i sit for just a few minutes and get up,i have to have my cane,the pain in my foot makes it hard to walk,till i can get several steps taken,then it will lessen some,till the next time i get back up again...i'm guessing this is the joint paint i'm having,but didnt know this till i started reading all this about PPS...my house is so small that it wouldnt allow for me to use a wheelchair,if i ever got to that point...my left foot has no give,and cant bend nor move that foot,from that triple arthrodesis,it is completely stabilized,which makes it suscepitble to bone growths,which are kinda similar to bone spurs,only i get them in places where people dont get bone spurs...so the reason for these orthotic shoe inserts is to relieve the pressure on the way i walk on that foot,but when they do that,it affects my leg and my hip too...what takes a couple months to do,takes that much to un-do then...so i'm not having much luck with orthotics...so i'm wondering if a brace would do me better...i also read there's a paralytic polio,and a non-paralytic polio,and i assumed i had the non-paralytic as my leg was not paralyzed,but in reading my old medical records,i have the paralytic polio...
Hello there, I ajust turned 52.... I would definitely be careful of exercise- I have stretches I can do for my legs, back and shoulders... It is wild, but when I used to walk alot, my good leg would always go stiff and for sure after the spasms would start- this started in my 30's.... I would just blow it off. I had polio if my left leg- more weakness than anything so I had just a mild case of paralytic polio when I was 4- my leg remained weak for years, matter of fact, I do not think I ever regained strength back like a normal person... But I just wore special shoes that were built up for my length difference.
I think you Really should be wearing a brace- maybe you could just contact Dr. Bruno and ask him- he will listen and is so great about getting back.... You don't have to just be a patient of his... He wants to hear from all of us... He could steer you in the right direction and maybe through the right contacts get you some help....
I strongly recommend not to keep pushing yourself, because once you burn out more neurons you never get them back... I have Muscle Atrophy of my left quad- never knew I had that- and once that happens those muscles are gone... So please take care and get your brace- and make sure you go to the right doctors and ones that know about Polio/PPS....
Hugs Janet (Please let me know) I am now retired- not by choice but by PPS..
hi janet...wow you're not much older than me..that has pretty much been the extent of my left leg,the weakness,and i never had any strength in that leg..is your leg skinnier than the other leg too?...so when you say you got muscle atrophy of the quad,what part of the leg is that in,cuz i've read that happening too?...i get a feeling of tiredness in the very upper part of my leg,and lately that feeling has not gone away...its the top part of my leg,not the backside of it...so how would i contact this Dr. Bruno in email?...how does this brace help?..other than my leg just being weak,its been my foot thats always been my trouble and for the surgeries...but i know times i've had to run,like after my dog,my leg will get spasms and gets really weak,so i agree,i dont think exercise would help..and too i figure i get enough exercise at work,and am probably over-using and is why i'm feeling it more now...you had mentioned it getting to you now in your arms and shoulders,how does that happen?...in my medical records,there was a mention of slight osteoporosis at age 11,sure makes me wonder how much i have now..the doctor who did my foot surgery 11 years ago mentioned getting a bone density test done,but i never did go back for that,but would like to get one now though...that leg is literally "wasting away",as i dont use it,other than to help walk............<<<<<<<<<<removed>>>...t hank you so much janet for just being here ya know...cheryl
Last edited by moderator2; 02-04-2008 at 06:15 AM.
Reason: please do not ask members to post against the rules
Cheryl, I'm not sure what to tell you about my brace, it is attach to my shoe and goes up almost to my hip, there is a lock at the knee so I have support to walk but I can unlock it to sit down. My right leg is very skinny to, I can walk without my brace but I have to hold my leg and my knee bends back so I limp real bad. I can't take care of my kids that way so I wear the brace allmost all the time now. My kids are 1 and 3, sometimes its hard for me but I love them and I want to be the best mom and I am very lucky my husband is so wonderful he helps me so much.
hi dana...i dont know what kinda brace this doctor was talking about,as i wanted no part of it,so didnt ask...how did it happen that you got polio when you almost never hear of people getting it anymore?...you're so young is why i ask...i may have always been in denial of my polio,but i alwaysss knew that there were others who got it worse than me,and i could really feel for them...and i'd about bet you're the best mom to those kids,healthy or not...just hang in there...there was a lot as a kid that i could not do so i know it isnt easy...when i do see a doctor,i am going to ask about a brace the next time...cheryl
Cheryl, I hope youre doctor can get you a brace that help you walk better with less pain. I understand how you want no part of it when youre younger, I was like that to, I thought the brace make me look like a freek and people stare at me. I know its very rare my age to have polio but thats what happen to me, my mom had alot of problems, she was 16 when I was born and running away from her parents and her boyfriend, she just never took me to the doctor and get the vacine. I was raised by my grandma and grandpa because my mom was'nt there for me most of the time and I never knew my dad at all. When I was about 10 my mom start to get her life back, she got clean and finish high school then her college degree. She got a good job and a promotion if she move to Atlanta from CA. I went with her, I was 16 it was a chance to start over in a new school. My grandma allways made me wear my brace but my mom said I did'nt have to. I did'nt wear it for over a year, my knee and hip hurt all the time but somehow I thought it look better. I met Kevin in school, he is sooooooooo amazing. He ask me about my leg, why I limp and have to hold my leg, it was hard for me to talk about it but finally I explain it to him and he said there must be something that can help me walk better and I told him I have a brace, he said well if it help you walk better you should wear it. I was so scared what he would think but he said it make me walk better and look better. I start having alot of problems with my mom, she was upset about me and Kevin she said I was making the same mistakes she made, I said can't you see we are in love. It got to where I did'nt even want to go home and listen to her go on about it. I wished I was back in CA with my grandma and grandpa but I wanted to stay so I could be with Kevin. I did'nt realize my mom was using again, then 10 weeks before I was suppose to graduate high school my mom took her life. I came home and found her in the bedroom, it was the most horrible thing ever, I was a mess for over a year, could'nt sleep, every time I close my eyes I saw it over and over again, I had alot of therapy and some time in the hospital and Kevin stayed by me through everything. I told him he deserved better than this he should go find somone else but he said no Dana I love you and we will get through this together. His parents to, they were so wonderful they treat me like their own daughter, I call them Mom and Dad because thats what they are to me. So now Kevin and I are married and we have two beautiful children, and I am determined to be the best mom ever.
Kevin is amazing and his family to, they are wonderful awsome people. Kevin is sooooooo smart, Amanda was born and we got married while he was in college and working part time, still he graduate with honors from GA Tech in 3 1/2 years and he is a computer engineer. I am so proud of him.