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.
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
The Following User Says Thank You to codycowboy For This Useful Post:
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
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