Happy 4th of July to all my Polio Buds out there..... Carolyn, I surely hope you do get help... I was excited to read you went to a new doctor and they actual listened.... Please if you can get to the Institute near you, do it...
Good book, alot of info. - if you listen to your body you should know if you have PPS.. I pray for you everyday...
Cheryl - I am glad you are writing down what brings on the pain- this is and will be so helpful- just wish you did not have to work like you did.. But I understand $$$situatian.Please really think about checking eailabach option available to you.. I worry so.
Ronnie, Phyllis and all- drop a line let us know how you are doing when you can
hi Janet...i hope you have a merry 4th of July today,and a safe one...i have to work today and will be a busy day too..i've been reading my pension book
to find out what will be the better route for me,retirement or disability,so i can let my neurologist know this,for when she makes out her report she knows how to word it...looks like i'd be better for her to write it as to disabililty,because early retirement for me would be age 55,and that would be
a decreased amount,but a disability pension would be like full retirement(no decreased amount),and too,if i cant make it to age 55 or older,i've got a way
out by going on disability..and right now i take each day as it comes,no way of knowing i could make it to retirement age ya know,a lot can happen between now and then too..and she's already thinking i wont make it much longer than the year and a half i want to go..
carolyn,i so agree with janet that you should go to that Post-Polio Institute also,since you have one there,and they will help with a treatment for you too...if i had one around me,i'd have not even messed with these other doctors first,other than getting that blood work done,to rule out other causes...
ronnie,phyllis,i hope you're both doing well too...cheryl
Hope you all had a happy fourth! I always used to go watch fireworks when I was younger, but now I stay home and comfort my dogs. They really freak out with all the noise, especially my border collie, Maggie. She gets so scared she shakes and eventually tries to get in bed with me. Poor baby. Next year I am going to give her something to calm her down! I was actually surprised that the county that I live in allowed fireworks this year, considering all the fires in California. The one in Big Sur is really bad.
Question for all of you........for those of you who have a dropped foot, does your foot ever get swollen??? Lately my left (dropped) foot and ankle get swollen. I have never had this problem in my entire life. My foot also gets really red, almost purple, when I get out of my shower, or out of my hot tub too. I know that edema is caused by leaky vessels, but I am wondering why this is happening to my dropped foot.....maybe because my muscles aren't working anymore? I would like to know if any of you have swollen feet, and what you do about it.
Hot here in California.....we are headed for triple digits soon. Hot days are good for staying in and watching movies! Hope all is well with everyone.
hi carolyn,janet,and everybody..i have a Bichon dog,and she kept barking at all the noises,the fireworks,so i thought i'd take her outside on the deck so she could see the lights in the sky,and nope,she's more a bad *** inside the house,lol..i was holding her in my arms and she was shaking so we came back inside..she's my little baby girl..
Carolyn,i've never had my dropped foot turn purple or get swollen like that,but that dont mean others dont have that happen though...its usually the ankle area,times when it looked swollen,but doesnt happen much,which i'm surprised for as much as i'm on my feet...my foot is always colder than the other foot,but even then doesnt look purple...at least not that i've ever noticed anyway..have read those with the polio foot,can turn purple though,just never saw that mine went to that extreme though..which is from poor blood flow..my dropped foot came with the polio,never knew it could happen later on,like yours is...and too,i had that triple arthrodesis surgery done on my dropped foot,so its just so stabilized and stiff that it dont move much in any direction at all..i have to protect that foot at all times..when someone is playing with my dog around me,and if that foot gets hit,it causes
me great pain..if someone trips over my foot or hits that foot in any way,it causes me great pain..when i'm laying down on the couch relaxing,and you know how some people just plop down on the couch,i get freaked out because if they landed on that foot,they could so easily just break it..i get freaked out when anyone is close to that foot because i know accidents can
happen..i cannot even walk on that foot without a shoe on,even inside the house because that foot is so sensitive and tender..whenever i get home from work,i take my tennis shoes off,and put on slip on shoes,or a light canvas tennis shoes,and many times you'd see me walking around the house,with one shoe on and one shoe off..now since i'm having so much pain
in both feet,i have to have shoes on both feet...but that polio foot,i baby with my dear life and have all my life..
Cheryl - thanks for sharing about your dropped foot, and also about the PPS wall. I am so sorry your foot is painful. Mine is just like a noodle....no muscle strength. I can wiggle toes a bit and move my foot to the right, but that's it. It doesn't give me pain. The only pain I have is muscle spasms in the morning, and cramps, in both legs. Sometimes I get a cramp in my neck muscles, especially when I yawn....weird, and scary....makes me worry about future difficulties swallowing, which I pray doesn't happen. Ever happen to you or anyone else? I am not nearly on my feet as much as you are, yet my foot still is swollen. That little scary ALS voice comes popping up when my symptoms are not like yours.
A friend of mine in Elk Grove lost her father to ALS two years ago. She is getting a team together and we are walking for ALS. It is an annual walk to raise money for the ALS Foundation. I guess the walks happen all over the country. I am going to participate this year (in October) and bring my scooter and "walk" with her team in honor of her father.
Looks like we are in for a heat wave in the Central Valley in California. It is supposed to be 106 degrees......yikes!! Looks like it is going to be either staying inside and reading, watching movies, or going to the movies where it is cool.
Carolyn- I would not worry about if your symptoms are different or some don't always have the same... The PPSers I have talked to some have the same and some have different sypmtoms in different areas- it is Kinda like the Polio when it hit- some did not even know they had it- some had mild cases- some have flu like symptoms- some were paralysed- it is so wild all the different ways it affected us. I think with PPs it is alot the same- some of the things you talk about or mention I know I have heard it from someone out there- LOL...
Take care and bless yah all- Janet
I have been getting more weaker lately so try to get on but sometimes I read and cannot answer.
Janet - I always love to hear from you. But now I am worried about you.....you said you are weaker......have you just hit a PPS "wall" ?? I am sure you are resting. I pray for you Janet, and Cheryl, Ronnie, Phyllis, every day. My thoughts are of you. I wish we lived closer so we could visit each other.
hi carolyn,janet,and everybody...carolyn,i too, wouldnt worry if all your symptoms arent the same as others,cuz like janet says,everybody is affected differrently...my foot pain is probably joint and arthritis..and i too cannot wiggle my toes,in fact,the doctor who did my EMG told me to bend my toes downward,told him i cant do that,so he bent them down for me so he could get a reading..just as the "polio feet",others turn purple,but my foot doesnt get purplish..my big toe was fused and it drops lower than the rest of my toes too,so its easy to stub my toe on the floor if i dont have a shoe on,and could break that toe,which did happen to me as a kid..when do you see this new neurologist?...
oh Janet,i am so sorry to hear you've been getting weaker..i know you get your rest,and is that not helping?...have you heard anything on your PC?..i sure hope you get to feeling better...love ya'll...cheryl
Hi I hope yall had a good holliday weekend, we sure did, it was fun now Amanda really liked the fireworks she is allmost 4 but mostly Nicole was just scared and get close to me.
I think its not just the PPS that make youre foot that way, I am only 24 and my polio foot is allways like that, when I take off my brace I still need to have a shoe on it or I will fall because it is just to floppy. I dont have much movement in any part of my leg but the foot is definetly worst.
Something I know yall will understand, when we went to the park for July 4 I wore shorts and thats a big deal for me because allways I hate for my brace be seen and people stare at me but this time I did it and it was ok. Later on Kevin's mom said Dana I'm very proud of you and I think you know why and I just hugged her and cried, she is so amazing she is the mom I never had.
I hope every one is doing ok with the PPS and all.
Good to read your post Dana. I know how you feel about your brace showing. I was self-conscious about it at first too, but now I don't care. I have lots of pretty skirts that I used to wear to work, and I figured I would never wear them again, but no way! I wear them all the time, even if I don't work anymore. Glad you had fun on the fourth.
Thanks for sharing about your floppy foot. It's the pits. I used to get around OK, with the brace an all, but my left leg is pretty weak and my knee kinda gives out some. Right leg is getting weaker too, which I am really upset about. I can still manage to walk a little with forearm crutches, but get tired really easily. But, then I think.....why get upset when I have no control over this. I am just trying to make the best out of a not so great situation. Once I get my stair lift I will be much happier not having to climb my stairs. It is going to take 6-8 weeks! I may have to scoot up the stairs on my butt by then!! LOL!
I wrote to Dr. Bruno again with more questions. I asked him if he thinks that having a lumbar puncture, and a muscle and nerve biopsy will help with a diagnosis. I am anxious to hear his answers.
I see my new neurologist next Tuesday. I even bought him a copy of Dr. Bruno's book in hopes that he will read it!! I have lots to tell him. I have seen him once, two months ago, and now I am covered by my insurance to see him whenever I need to. When I saw him two months ago I didn't know about my childhood history around polio. He will get an earfull from me.
Janet, I am worried about you. I know what you are going through when you say you are getting weaker.....me too. I understand you are getting a power chair....when? Hope you have it by now. I don't know what I would do without my scooter.....wouldn't be able to go get my mail or "walk" my dogs, or shop.
Hot, hot, HOT here!! It is supposed to be 108 degrees in Sacramento on Wednesday! yikes! Guess I won't be going anywhere......air is yucky too because of so many fires still. Hope it is better where you are.
hi carolyn,janet,and dana...good to hear from you again dana...i too was always self conscious of wearing shorts,but not because of a brace since i havent been in a brace since i was a kid,but because of my leg being skinnier than the other leg...always felt like others would notice,so i just never wore shorts,and never wore dresses neither around people..i could never wear heels because of walking on the outer edge of my foot,my foot would turn on me,just as it does when walking on grass and un-even surfaces...my foot isnt "floppy" because of the triple arthrodesis,it is "stiff"...when i took over renting my daughter's house,i have a lot of steps to climb up to the deck to get to the front door,so i thought to avoid those steps,i'd be better off to walk around to the back of the house and go in thru the kitchen door,but that didnt work out for me cuz walking thru the yard and up a small hill,my foot was constantly turning over on me and couldnt get balance,that it was a struggle for me,and then my foot would be wore out by the time i got to the door..so instead i have to climb all these steps now but use my cane to help me get up the steps...going to work in the mornings is real tough because its so dark outside and have no lights around those steps,scares me if i miss a step or if i just stumble,i'm going to fall down them steps...i have got to get some kinda lights for there but always forget,till i go to leave for work in the morning again...i use my cane like a blind person does,to tell me where the next step is before i step down..and too,because of such a stiff foot,i take steps one at a time,because it dont bend...
carolyn,i'm glad your appt. with your neurologist is soon,so let us know what happens when you see him...i'm anxious to hear what dr. bruno says to you too...
janet,i too am worried about you because you're not here like you usually are...we miss hearing from you,and i really hope you get to feeling better soon...well i hope everybody else is doing ok...love ya'll,cheryl
Carolyn and Cheryl, its good to know I am not the only one with these problems. Allways I wear slacks to cover my skinny leg and most of my brace, of course you can still see the part that attach to my shoe and the lift. My knee is very weak to, the only way I can walk without my brace is push back my leg with my hand to make my knee bend backwords. When I was 16 I did this for a whole year because I though the brace make me look like a freek, of course now I relize how bad I limp that way and my knee hurt all the time and my back to without the lift. And I fell alot. When I met Kevin he ask me about my leg and he said there must be something to help you walk better so I told him I have a brace and he said if it help you walk then you should wear it. I was soooooo scared what he think but he said it make me more beautiful to walk without pain and not to fall. Now with my girls I wear the brace allmost allways because I am afraid to fall while I hold them. It was a big thing for me to wear shorts like I did and I hope I have the nerve to do it more times, it gets very hot and humid here in GA. I have problems with stairs to, if theirs a railing on the left side I do ok but still I have to go very slow. We are looking for a house now and its hard to find one without stairs somewhere.
I am worried about you Janet. Please email us and let us know how you are. I feel like all of you are my new family and I miss you Janet.
Glad you are wearing your brace Dana, with shorts! I always remember that beauty comes from within. I felt kind of self-conscious about riding my scooter to the swimming pool, which is only 1.6 miles from my house, but I now ride on Mondays and Wednesdays each week now (sometimes Fridays) and love every minute of it. I don't care who sees me! The gardens along the way are lovely, so it is a nice ride. The scooter is actually fun. But I am not riding tomorrow because the air is bad here (smoke from all the fires), plus it is only 106 degrees out today!! (that's why I put the red face on this email!!) It takes me about 25 min. to get to the pool and I don't want to be breathing bad air for that long, let alone being too hot.
Stairs are scary Cheryl. It takes me forever to climb mine. I have to wait nearly 2 months before I get the stair lift......patience!! I hope you get lights for your stairs Cheryl!! Falling is no fun, that's for sure. The last fall I took was awful - lost my balance in my kitchen and went down hard on my floor....ouch.....just a few bruises. It's pretty hard to get back up off the floor when leg muscles are shot!! I only took one bad fall that put me in the ER - knocked myself out on the cement driveway.....smacked my forehead and had a lump the size of an egg, and a black eye....cute! My daughter wants me to get one of those medic alert things that you wear around your neck. I have a home alarm system so maybe I will call them to see how much more it would cost. I do think about falling and hurting myself and not being able to get to the phone. I try to be really careful.
Dr. Bruno emailed me today. He answered my questions about whether or not to get a lumbar puncture and muscle/nervie biopsy. He said that if my neurologist absolutely thinks I have ALS then yes, I should have those tests. Interesting, because I have been to neurologists about this for way over a year, they all say they think I have ALS, but never ordered any of these tests. Go figure. Dr. Bruno also said that lots of PPSers have twitches everywhere, so I guess I am just a regular, non-stop twitcher!! I am so thrilled that he takes the time to answer my emails. He said that sometimes PPSers have swallowing problems, but usually it is minor like when your food or liquid goes down the "wrong pipe" and you choke......I hate when that happens! He said that PPSers rarely have breathing problems. I asked him about the swallowing/breathing problems because I worry about it all the time because of ALS. He also said that he would be glad to communicate with my new neurologist. I wish I could meet him in person.
I am rambling on.....sorry.....boring day actually....stuck inside because it is way too hot to go out! Reading, watching TV, playing on the computer.....not too exciting.
Take care everyone,
Blessings to all of you. I pray that you are OK Janet.
Carolyn, I understand the part about self concious and I am trying hard to get over it. Allways I take my girls to the play ground in our appartment complex and I wear slacks and it gets very hot here even in the morning. I want to try wearing shorts but I cant do it yet, it was ok on July 4 but I had Kevin with me and his parents to, its alot harder with just my girls, I dont know why. Some times at the play ground I feel like everybody staring at me for the way I walk and I know it will only be worst in shorts.
Dana - Wear your shorts!!! I will still always say that beauty comes from within. Who cares what other people think! If you want to wear shorts and they make you comfortable, then by all means wear them! My brace shows when I wear skirts and capris and I have gotten to the point where I don't care anymore. I am going to paint a pretty flower on my brace! Have your girls draw something on yours!
Carolyn, thanks for incoraging me, it really helps. Kevin allways tells me I am beautiful and not to worry what any body else thinks. I had to go though alot, not just the polio, also my mom not being there for me and hurting me., but now I have a wonderful family with Kevin and our girls and his parents to, I call them mom and dad because thats what they are to me. I think its fun you put a flower on youre brace, my brace does'nt have any place for that but maybe my girls can put stickers on the leather part that go round my leg.